Previous Section Back to Table of Contents Lords Hansard Home Page



30 Mar 2011 : Column GC175



30 Mar 2011 : Column GC175

Grand Committee

Wednesday, 30 March 2011.

Arrangement of Business

Announcement

3.45 pm

The Deputy Chairman of Committees (Lord Colwyn): My Lords, it has been agreed that should any of the Questions for Short Debate not run their allotted hour this afternoon, the Committee will adjourn during pleasure until the end of the hour. Therefore each of the Questions for Short Debate will start at a quarter to the hour. Of course, if there is a Division in the Chamber we will break for the usual 10-minute adjournment.

Youth Crime and Anti-social Behaviour

Question for Short Debate

3.46 pm

Asked By Lord Dholakia

Lord Dholakia: My Lords, I am grateful for the opportunity to initiate this debate. The report, Time for a fresh start, was produced by the Independent Commission on Youth Crime and Antisocial Behaviour, which was set up by the Police Foundation in 2008 with funding from the Nuffield Foundation. This was supplemented with additional funding from the Paul Hamlyn Foundation for a youth engagement exercise which ensured that the commission received valuable direct input from young people.

I declare non-financial interests: I am a trustee of the Police Foundation; president of the National Association for the Care and Resettlement of Offenders; and I have recently joined the steering group of the Young Offenders Academy project.

Over the years there has been much debate about the underlying cause of crime and a good deal of research into the type of interventions that are necessary. However, it is not universally recognised that most research tended to refute rather than confirm the hypothesis about the causes of crime and the effectiveness of punishments and treatments. One thing on which we are all clear is that the public and political mood continues to be conditioned more by hunch and gut reaction than by informed reports and research. We have seen in the past that the ability of the criminal justice system to influence crime is overstated.

I thank the Minister and I welcome the Government's consultation paper, Breaking the Cycle, and particularly the emphasis placed on the rehabilitation process. Real progress may be achieved only as more far-reaching changes take place in society, whether of an economic and social nature or at the level of our moral values

30 Mar 2011 : Column GC176

and motivations. In essence, priority must be given to crime prevention in its broadest sense and schemes for diverting as many young offenders as possible from the criminal justice system. History has proved that this is an entirely realistic appraisal of the strictly limited contribution that the courts and penal institutions can make to reduce crime.

We always underestimate that people have the capacity to change: no one is born a criminal. We cannot solve the problems of crime and reoffending by simply isolating individuals from wider society. There are clear benefits in early intervention with families caught up in the cycle of deprivation and disadvantage. The key factors that effect help are providing positive role models, developing positive relationships and getting young people back into education.

A civilised society should not tolerate anti-social behaviour, personal victimisation and alcohol and drug abuse. The Young Offenders Academy project-I am glad that the Minister has agreed to meet its representatives-is not expecting to break the embargo on capital investment. I am sure that the Minister will acknowledge that the academy proposals are generally welcome so that the momentum is maintained and the project can engage with new funders and potential partners.

The Time for a fresh start report makes a positive response to the academy in its executive summary and its action on integration. The result is a cogent and detailed analysis of the causes of youth crime, our current responses to it and proposals to improve the way in which we deal with offending young people. The independent commission estimates that the country currently spends over £4 billion every year in dealing with youth crime and anti-social behaviour and that much of this money is wasted. Young offenders are often treated in ways that have little to do with preventing offending. For example, the annual cost of custody for young people ranges from £69,000 in young offender institutions to £193,000 in secure children's homes, yet 75 per cent of those serving custodial sentences are reconvicted. At the same time, there is little investment in preventive measures and constructive community-based penalties. The commission's proposals are based around three key principles: restoration, prevention and integration. My colleagues from this side of the Committee may speak further on these three aspects of the strategy.

On restoration, the report proposes that restorative justice becomes the standard means of resolving all but the most serious cases of youth offending, either pre-trial or as an alternative to prosecution or after conviction by a court. It proposes that restorative conferences should lead to action which includes some combination of an apology, financial reparation to victims, unpaid community work, supervision by youth offending teams, treatment for mental illness and all substance abuse, parenting support and help from children's services. In Northern Ireland, where a system of restorative youth conferencing was introduced five years ago, this approach has led to a reduced use of custody for young people. A similar approach in this country could do a great deal to reduce the human cost of youth crime.



30 Mar 2011 : Column GC177

On prevention, the commission is keen to see the savings derived from the reduced use of courts and custody being reinvested in preventive intervention at an early stage in the lives of children with behavioural problems. Investment at this stage will be repaid many times over. By the time a child with a conduct disorder reaches the age of 27, it is estimated that the cost to public services is more than £85,000 if the disorder is not treated. The commission proposes a structured programme of investment in the most promising preventive approach.

On integration, the commission wants to see a focus on keeping young offenders in mainstream society through intervention and sanctions in the community that can help steer them away from criminal behaviour. The report accepts that some young people who are violent have to be placed in secure settings because they are a risk to other people or themselves. However, it argues, as I have frequently done in this House, that we currently overuse custody and that it should be used only as a last resort.

The commission welcomes the recent reduction in the number of children in custody and recommends that a target be set for at least halving that number. It proposes the introduction of a tighter statutory threshold for the use of custody and the abolition of short custodial sentences for young people. The reduced number of young people who would then be held in custody should be placed in small, purpose-designed units with regimes modelled on best practice in staff training and an understanding of child development.

I hope that the Government, who have so far shown themselves to be refreshingly open to constructive thinking on criminal justice, will feel able to adopt the approach proposed by this stimulating report. In his introduction to Time for a fresh start, the chair of the commission, Anthony Salz, writes:

"We need to respond effectively to the real difficulties faced by a significant number of our children today, especially those from deprived and chaotic backgrounds. We also need communities to come together with a shared commitment to understanding the needs of troubled young people and how their self-belief, skills and achievement can be encouraged to give them better chances in life. By doing that we can set about the task of creating a response to youth crime and antisocial behaviour that is intelligent, humane, flexible and, above all, optimistic".

I echo those words and commend this incisive and constructive report to the Committee.

3.54 pm

Lord Judd: My Lords, I am very glad to have the opportunity of speaking immediately after the noble Lord, Lord Dholakia. It is absolutely no exaggeration to say that in this sphere my admiration for him and his commitment is unlimited, all the more so because he does not speak in theoretical and academic terms. He speaks with the authority of engagement as his record spells out. I hope that I am allowed to say that I sadly wish that I was speaking on the same side as him, rather than opposite him-but if I go down that road, I will have problems with quite a number of people who at present sit opposite. Having said that, I know that it is their choice, and I must respect it even if I think that it is a profound mistake.



30 Mar 2011 : Column GC178

We should also place on record real appreciation to the commission. What is important about the commission's work-and I am struck by it-is that it really has listened to the young. It has not just theorised about the young; it has listened to the young.

I have one nuance that I should like to discuss rather than debate with the noble Lord, Lord Dholakia. It is a matter of emphasis. He said that we must give primacy to the prevention of crime but then went on to argue very powerfully that we must look to the long-term cost-effective strategy and not to the short-term wasteful strategy. I am not sure that I totally settle for that. What we should give primacy to is the issue of the lives of young people being a good and positive experience. Unless we really have that commitment right, we will always to some extent be sticking fingers in a dam in which there are serious cracks. A debate such as this gives us the opportunity to make the point that we must look at ourselves as a total society-not only in our social commitments and priorities, such as housing, education, social welfare, health and so on but also in our value system. If our value system is one of greed and opportunism, it undermines our credibility when in Parliament we speak about the responsibilities of the young, because they look at us and say, "Hang on a moment, who is telling who what to do?". We have to face up to that one very honestly.

I totally endorse the argument that it is a wasteful and irresponsible use of public taxpayers' money to follow policies that are not effective and are failing to provide lasting solutions. I cannot begin to equal the experience of the noble Lord, Lord Dholakia. However, having been for nine years the president of the YMCA in England, I came across a lot of the work being done in the front line and had the opportunity of speaking with many young people, both those engaged in the work and those with whom they were co-operating.

One has to look at the total range-housing, homelessness, and the absence of any kind of stable family background in whatever form. I am not arguing for a particular form of family. It is sometimes regarded as not very parliamentary or macho to use the word that I am about to use, but I happen to believe that it is central to the issue. There is an absence of real love-tough love, if you like, but real love-in the upbringing of children. When I met some of the young people, I often remarked to myself that it would have been quite remarkable had they not been in trouble. That is a point that I have made before in debate, and I am sure that I shall make it again. That does not mean-and I know that my old friend, the noble Lord, Lord McNally, has made this point to me before in winding up debates-that the individual responsibility of the young is removed. There are many good, very powerful and moving examples, of young people who against the most awful social odds have made a success of their lives. That is something that we should recognise. But not everyone is the same, and not everyone has the same strength. We really must recognise that we must have an holistic approach that takes the whole range of issues into account.

There is not really much more that I want to say except to say that I endorse the recommendations of the report. I will not necessarily agree with every one

30 Mar 2011 : Column GC179

of them. The report falls into the trap of being preoccupied with treatment and response as distinct from the social context out of which the problems arise.

I hope that all of us, wherever we are in the House and whatever our own political convictions, will take this report seriously and let it influence our analysis and approach to debate in the future. Of course it is a financial issue. Before we have lectures from those opposite about the financial stringency within which they are operating, let me say that I realise there is financial stringency, which is essential, but this is the very time to get the policies right. You simply cannot afford to go on indulgently with policies that are not working at a time of financial stringency.

We must simply have the courage in Parliament, wherever we are, to stand up to ignorance and opportunism and to the circulation mania of the popular press who pander to this. I sometimes want to get up and say, "You are helping to generate the problem. You are not solving it with your penal, sensationalist approach. You're actually making the situation worse and are undermining the whole cause of social order". We have to have an analytical, rational, caring approach and I believe that the noble Lord has set the tone in what he said this afternoon.

4.01 pm

Lord Imbert: My Lords, it is a privilege to follow the noble Lords, Lord Dholakia and Lord Judd, in this all-too-short debate on a subject that has been a major cause of concern for a very long time. How do we minimise the harm that the anti-social and criminal behaviour of young people causes to themselves and to the wider community? As the commission said in its excellent report, appropriately entitled Time for a Fresh Start:

"The current response to antisocial and criminal behaviour by children and young people is too often characterised by confused accountability, risk aversion and excessive bureaucracy, with limited room for individual discretion and professional judgement".

In short, our response to anti-social and criminal behaviour by these young people is just not working.

My noble friend Lord Ramsbotham gave evidence to the independent commission and wisely said that the three things to prevent people reoffending are a proper home, a job and stable relationships. I would add a basic education to that list. Many of those who enter the treadmill of prison reoffend and do not have any of those advantages. We can but hope the Government will examine the matter more thoroughly.

Incarcerating these young offenders has not reduced their reoffending rates. Indeed, it is the view of many that prison has too often become the starting block for those who have then embarked on a criminal career. I accept what the Secretary of State for Justice says: that we lock up too many young people with no good result. But I only partly agree with him, because, sadly, we must acknowledge that there are some young criminals who, because of the nature of their crimes and the need to protect highly vulnerable members of the community must, unfortunately, be put for a time where they can no longer do harm to themselves and others.



30 Mar 2011 : Column GC180

But if prison does not work and reoffending rates remain unacceptably high, what else can we do to protect the public, give satisfaction to the victim and make it possible for the offender genuinely to change his or her ways and become an acceptable and useful member of the community?

Many years ago, the "short, sharp shock" was introduced and, like others, I thought it was the answer to those young villains. I was wrong; it did not work and neither did much else. We have had ASBOs, which the new Home Secretary has announced will be replaced by criminal behaviour orders. Let us hope that they are more successful than the often abused ASBO, but what if none of those work?

There is another way forward. Many of your Lordships will be familiar with the concept of restorative justice, as mentioned at length in the report. We have to accept that there are differing views on whether or how well that method works, much depending on one's experience and knowledge of cases which have been dealt with by it. We have often heard that the criminal justice system favours the offender and ignores or fails to understand the hurt and fear suffered by the victims. Restorative justice is a victim-focused resolution to a crime or incident which, with the victim's agreement and, more often, their participation, will see young people held properly to account for their criminal and anti-social acts.

In this way, restorative justice is about putting the victim's wishes and expectations first, when the officer dealing with the incident has the discretion to offer the victim the opportunity for the crime to be dealt with through a process of mediation and conferencing whereby, in a properly supervised and appropriate case, the offender is faced by the victim, who has the opportunity to put his or her case to the miscreant and show the hurt and damage he or she has suffered. That gives victims a strong voice, which increases their satisfaction with how their crime is dealt with.

Let me give your Lordships a short example of how this is done, which came to me from the Greater Manchester Police. A boy stole a quantity of chocolate from a shop. He was seen to do so by the staff and his act was captured on close-circuit television. The film was taken to the local high school, where the offender was easily identified. Police then informed the shopkeeper of this. He did not want the youth taken to court and prosecuted for the offence but he did want some action: for the boy to be advised and to understand his wrongdoing. The restorative conferencing system was explained to the shopkeeper and he agreed to a meeting. At the conference, the shopkeeper pointed out to the boy that the sale of goods was his own livelihood-the only way he made his living, and his full-time job. The boy said that he had not realised or thought about that before and both he and his parents apologised, the parents paying the shopkeeper the money for the chocolate. The shopkeeper was satisfied with that outcome and the boy and his parents said that it would never happen again.

I am informed by the Greater Manchester Police that the whole process, from start to finish, took just 2 hours and 20 minutes. No expensive and lengthy court hearing took place, which would have meant the

30 Mar 2011 : Column GC181

shopkeeper, a member of his staff, the teacher who had identified the offender from a close-circuit television picture and the police officer spending a day, or maybe more, in court. The boy, who showed contrition, was not put on the first rung of a criminal record at that point in his life, when still learning how to behave in a civilised and acceptable way. I urge the Government to examine the process of restorative justice deeply and thoroughly. Done successfully, that will not only save the country money but, most importantly, offer the best chance yet of reducing the high reoffending rates of young people.

4.10 pm

Baroness Doocey: My Lords, I declare an interest as a member of the Metropolitan Police Authority. I endorse the comments of my noble friend Lord Dholakia and agree wholeheartedly with the points made by the noble Lords, Lord Judd and Lord Imbert, about the importance of family. It is crucial. Sadly, however, the only family that many of our young people have ever known is the gang culture. We need to understand that it is very unusual for a lot of children, strange as it seems, to have even one parent who is looking out for them. They have no choice but to live by the rules of the gang, and in my work for the Metropolitan Police Authority, I have seen some of the most horrendous things, such as children being made to hide guns because they were not currently on a police list. It is easy to get into a situation whereby you have almost no way out. I very much welcome the fact that this report sets out a clear and rational strategy for dealing with youth crime and anti-social behaviour.

The commission has built its central recommendations on reform of the three pillars, which are prevention, restoration and integration. Like the noble Lord, Lord Dholakia, I shall highlight the prevention and integration elements. The key principle is that prevention is better than cure. I think that everyone agrees with that. Keeping people in prison is expensive but we must recognise that we do not live in a perfect world and there will always be a need for prisons. We need to reduce the likelihood of reoffending and re-imprisonment. A key element of rehabilitation and rehabilitating offenders is to get them into work so that they can earn a living and integrate into mainstream society. Earlier this year, I drew your Lordships' attention to the successful reforms introduced at Feltham Young Offender Institution in west London. The prisons regime includes education, workshops and vocational training, and in 2009 a pilot scheme called Project Daedalus was launched. The project aims to break the cycle of youth reoffending through intensive support. It really is intensive support-it begins inside custody and continues for the whole time the person is in prison, and during their release in the community.

In the wing in Feltham where this pilot is taking place, the reoffending rate has dropped to just over 18 per cent compared with a national average for juvenile reoffending of 78 per cent-a substantial drop. In addition, security incidents in the unit are 90 per cent lower than in other units in Feltham. The project is such a success that it will be rolled out to other young offender institutions. There is no question

30 Mar 2011 : Column GC182

that such projects cost money-a lot of money-to implement, and at a time when the Government have to make cuts in public expenditure there is a real temptation to say that we cannot afford it. That would be a serious false economy because programmes to reduce reoffending, although they cost money, represent money well spent. It is estimated that for every £1 that the Government spend, they will save at least £20 later. It is certainly a false economy not to spend the money now because it costs so much more to imprison young offenders, not to mention the costs imposed on society by crime, such as police time and court proceedings. The high rates of reoffending also impose costs that cannot easily be quantified-diminishing people's quality of life and reducing public confidence in the police and the justice system.

Of course getting young offenders into the labour market is not the only way to reduce reoffending, nor is it the only means of rehabilitation, but it is an important way of tackling the problem. We are all subject, almost daily, to a relentless tabloid-driven campaign that focuses only on the punitive aspects of combating crime. It is natural for people who have suffered the effects of crime to have strong emotions but we must resist the temptation to reject the rational in favour of the emotional. It is the Government's responsibility to act rationally and support programmes that are proven to reduce reoffending.

A debate a couple of days ago on the future of the Youth Justice Board suggested that there is strong cross-party support for measures that succeed in reducing youth crime. In conclusion, to what extent will the Government adopt and take forward the recommendations of the report of the independent commission, given the report's self-evident wisdom?

4.15 pm

Lord Ramsbotham: My Lords, I yield to no one in my admiration for all that the noble Lord, Lord Dholakia, has done in this field-even to the noble Lord, Lord Judd. I thank him very much for giving us the chance to talk about this important report, to which I had the great pleasure of giving evidence. Whenever we see such reports, we tend to look back, and two phrases in it immediately set my mind racing backwards. The first was:

"The young people directed our attention towards areas of need for reform that we might otherwise have underplayed or neglected".

The second was:

"Despite seeing pockets of promising practice, the Commission shares the strongly voiced concerns of Ofsted and the Prisons Inspectorate over the way that education and training provision in custody varies between institutions; and that help given to children and young people to prepare for their release is inconsistent and often inadequate".

How often have we heard that said? I look back to a report that I published in October 1997 as Chief Inspector of Prisons, Young Prisoners, and found, first:

"I believe that if young prisoners are to be engaged by regimes, they must be convinced that the challenges and demands that are made are relevant not only to their needs, rectifying deficiencies in their previous upbringing, but offer them genuine hope of better things resulting from their training".



30 Mar 2011 : Column GC183

Secondly, I found:

"Much inconsistency seems to be due to the fact that no one is responsible or accountable for the consistent delivery of regimes in every establishment in which young people are held".

That latter is a gramophone record that I have been playing over and over again since 1996: namely, that until and unless you have people who are responsible and accountable for making things happen, nothing happens.

This excellent report comes 13 years after Young Prisoners, which was sent to the Secretary of State containing many of the things that were said, including, in particular, on custody, but on other things, too. My concluding recommendations to the Secretary of State were numbered, the first one being:

"In order to reduce the harmful effects of custody on children, the energies and resources of Local Authorities, community and Criminal Justice agencies should be used collaboratively and managed through shared performance indicators to ... identify potential problem situations for children and provide families and schools with support and guidance to prevent children growing up as offenders ... reduce offending and divert children whenever possible from custody".

Thirteen years after those questions were posed, they have been largely answered by the way that the commission has looked at its work. In posing them in 1997, I knew perfectly well that I was by no means the first to be doing so. I believe that the Ministry of Justice now has an opportunity, which it has given itself if it will seize it, to do something about it.

In making my recommendation, I want to mention two organisations with which I am associated. One was mentioned by the noble Lord, Lord Dholakia, which is also included in the commission's report. It is involved with the young offender academies, which are alternatives to the way that has failed for so long. They are based on real proof of things that work. Right at the heart of what needs to be done is to provide long-term contact with a responsible adult. That is what is missing. If you keep people in a site and they come to it by day, it does not matter where they live at night-they can live in a custody centre, in a foyer for the homeless or they can go home. However, they all come back by day to the same place where the same work is done. If you localise all that-and the pilot study shows that an hour on public transport is a good radius and gives you a viable place to work-you encourage all the forces in that area to assist in the rehabilitation of their own. Chambers of commerce will be interested in training people who can fill jobs-they can train them for the future-all the activities-related projects in the area will come in and education, job training and so on can happen. This transition was strongly commended in the report because the independent commission saw the things that it wished to be done encapsulated in that kind of idea. We have been banging on about this for ages and I hope this opportunity will be seized.

The second matter I wish to speak about has nothing to do with custody. Earlier today I was with a remarkable organisation called SkillForce. It consists of members of the Armed Forces, including people who have been injured and are being medically discharged, who go into schools and tackle the worst elements of failing schools-the troublemakers, the excludees, the potential excludees, the evictees and, of course, tragically, those

30 Mar 2011 : Column GC184

in receipt of school meals. It is difficult to quantify what they do but, for example, 60 per cent of the people on school meals with whom they are working go on to further education, as opposed to 9 per cent who go through the normal system. They are working very hard and turning schools round. Mr Gove, the Education Secretary, has given them grants to increase the work they are doing, particularly on a zero-exclusion pilot in schools.

I mention this because they are doing positive work in challenging the worst. I do not see why these people, who are used to giving their service to the country, should not be employed in the community and provide a service for those in danger, in custody and under probation. I am sure that ex-members of the Armed Forces would be only too happy to do it.

I add that point as an addition to the debate, but my plea to the Minister is that the report is not taken in isolation and treated separately but is included in the work being carried out on breaking the cycle. This would ensure that it is not neglected but becomes a part of what is already in progress.

4.22 pm

Lord Bach: My Lords, I congratulate the noble Lord, Lord Dholakia, on securing this debate, and all other noble Lords who have spoken in it. It is all too short but it is appropriately timed in a week when the House has overwhelmingly voted against the abolition of the Youth Justice Board.

Time for a fresh start is a remarkable report and the commission is to be congratulated on its hard work, its passion and its insistence that, although the problems of youth crime and anti-social behaviour are complex and difficult, we should never give up the struggle to find better ways of dealing with these issues. A central theme of the report is the need to expand restorative justice, an approach whose time has come, in the words of Anthony Salz, the chairman, in his introduction.

The organisation Victim Support-we should never again forget the importance of victims and the need to make them part of our criminal justice system-believes that restorative justice should be an important element of the youth justice system. At present, police forces use restorative justice for out-of-court disposals, but there is a lack of consistency nationwide in their approaches. Victim Support complains that it is not routinely used in serious crime when it could be. While the Government's Green Paper, Breaking the Cycle, contains warm words, it seems to lack detail on how restorative justice will be delivered and implemented. No doubt the Minister will help us with that. Indeed, Victim Support is supporting a pilot called Restorative Justice, Gloucestershire, which I think all those who have spoken will want to know more about.

I do not know how widely it is known in the Grand Committee that in the first few years of the previous Government the Treasury in particular, under the then leadership of the right honourable Gordon Brown, gave a large sum of money to the Youth Justice Board to fund a large-scale inquiry into the value of restorative justice. Some years later, a seminar was held at 11 Downing Street, where a collection of very distinguished people, including judges-I see the noble and learned Lord,

30 Mar 2011 : Column GC185

Lord Woolf, in his place; he was one of those present- distinguished academics, public servants and others in this field were present to hear about extraordinary examples of restorative justice from offender and victim alike. I am told that those who were present will never forget the young offender who had taken a pistol into his school because of bullying and, in fact, nearly got shot himself by the police. They heard about the youths who trashed a village store and came face to face with the shopkeeper and the other villagers, and, above all, about the house burglar and the burgled who fought on the stairs in the burgled person's house and afterwards became best friends. That is all great stuff but it is important not to romanticise restorative justice. It must be a hard-headed, realistic alternative to other disposals. I want to ask the Minister a question. It has come to my attention that restorative justice projects in London are to come to an end because funding is no longer to be given to them. Can the Minister confirm or deny that in his response?

In the context of this report, the proposed abolition of the Youth Justice Board is an outrage. Indeed, it was described in the debate the other day as a "sacrilege". I am sorry that neither the noble Lord, Lord Dholakia, nor the noble Baroness, Lady Doocey, were able to vote against the abolition, but I understand party loyalty too. However, they did not vote for it either and, if I may say so, I respect that view very much. I know that their hearts are in the right place. However, how can the Government be taken seriously when they are, I am sure, keen to find ways of improving youth justice and helping young offenders, while at the same time they are set on abolishing the Youth Justice Board-a body that has proved its value over the years, as Ministers themselves have said in debate? It is by actions, not warm words in documents, that this Government, as with all Governments, will be judged.

I end by talking about prevention, which is one of the aspects referred to frequently in the report. In a summary under the heading "Prevention", the report says:

"It is important to involve a young person's family in solutions to their problems. Sometimes a young person gets involved in crime partly because of problems at home, for example, they may have parents who struggle with parenting, who don't provide good role models, who are abusive, neglectful or not around, who have mental health problems or are addicted to alcohol or drugs. Some parents need help with things such as these. Responses that involve the family can be a good way of solving some of the issues that push a young person into crime".

I emphasise the line:

"Some parents need help with things such as these".

However, the Government intend to remove legal aid from early advice on a whole range of issues that so affect those types of parents. Welfare benefits will be removed from scope as will debt, much of housing, employment and education.

Everyone who has spoken in this debate knows how early advice to families and individuals can save much worse from happening later on, including family breakdown, homelessness and-for the purposes of this debate-that descent into anti-social behaviour and then more serious crime. This sort of advice is to be decimated. To remove the advice that is available

30 Mar 2011 : Column GC186

at the moment is both morally wrong and hugely counterproductive in helping and keeping young people out of trouble. The Government should now abandon those proposals because they are very much linked with youth crime.

4.30 pm

The Minister of State, Ministry of Justice (Lord McNally): My Lords, looking around the Room I see many familiar faces. There is sometimes a feeling in these debates that we are a kind of exclusive brethren who espouse some odd ideas. Yet what has come out of this is the hard-headed practicality that I think the noble Lord, Lord Bach, referred to. One encouragement is that today I have received a pamphlet from the CBI, Action in the Community: Reforming the Probation Service to reduce Reoffending. The covering letter quite rightly said that as taxpayers and corporate citizens, businesses have a substantial interest in seeing the rate of reoffending cut. That is the argument that reformers have put consistently. To tackle these issues is not some kind of woolly liberalism but cold, hard common sense. Our approach will do far more, even if you do not want to indulge in any of the moral or social arguments for reform, as it works on the cold, hard balance sheet for the taxpayer. If we can achieve success in what we are trying to do, there will be real savings in money spent on this area.

As regards the comment of the noble Lord, Lord Judd, I believe that spiritually we will always be on the same side and I have no problems with that. However, I thought that the noble Lord, Lord Imbert, commented properly on what we are addressing. A proper home, a job, stable relationships and, as he rightly said, basic education are part of the mix that avoids offending and reoffending. As I have said on a number of occasions, you do not need to be in this job very long before you see those factors coming up time and again. It is not an endless list but actually a very short list of factors which seem to come into play. I fully appreciate that and I hope that the Government have already indicated that this report has influenced our Green Paper and will also affect our response to it.

As we have a very short time, I will not return to the debate on the Youth Justice Board. I am sure we will do so at some stage, but we had a very good debate that rehearsed many of the arguments. I will only repeat that we have no intention of dismantling the youth justice system that has been established over recent years. The youth offending teams, with their holistic approach, will be retained and our approach will put more responsibility where we think it should be-with local authorities.

I shall comment on the point made by the noble Lord, Lord Ramsbotham, about SkillForce. I have had a bee in my bonnet for some time that we underuse our ex-servicemen in this area. I went to a school in Bolton a couple of years ago where I was shown round and reached the cookery class, which was run by an ex-Army cook. There were more boys than girls in the class, quite voluntarily, because the boys liked him and his rather muscular approach to cookery, and he connected with the kids. Sometimes ways of dealing with young people might be better done by somebody, for example,

30 Mar 2011 : Column GC187

who has had the life experience that Army service gives rather than university or other skill training. I certainly want to take that idea back.

The noble Lord, Lord Dholakia, rightly raised the question of custody for young people and we are clear that custody would be used for under-18s only as a last resort. We are pleased that the number of young people in custody has fallen by around 30 per cent in the past two years. We recognise that although there has been a reduction in custodial sentences for young people, the number of those remanded remains high. We have brought forward proposals in the Green Paper to address the use of custodial remand for young people. The introduction of the youth rehabilitation order at the end of last year has created a robust alternative to custody. The YRO has a menu of 18 potential requirements and two of those are high intensive alternatives to custody: intensive supervision and surveillance; and intensive fostering.

The noble Lords, Lord Dholakia and Lord Ramsbotham, both referred to young offender academies, and I know of the espousal of the cause by the noble Lord, Lord Ramsbotham. The young offender academy is an innovative model. However, as the latest report from the Foyer Foundation recognises, building new custodial establishments for young people is not an option at this time of financial constraint. We recognise that effective resettlement of young people leaving the youth justice system is absolutely critical to breaking the cycle of reoffending. We want to see local services taking a greater role in the rehabilitation and resettlement of young offenders which would help them to better manage their transition back into the community and reduce their chances of reoffending. We are clear that organisations such as Foyer working with local authorities have a role to play.

Let me make it clear that preventing crime and anti-social behaviour by young people is a key priority for the Government. Our approach is to focus on tackling the risk factors that can lead to youth offending, improving the effectiveness of sentencing and strengthening community engagement. The Home Office is providing up to £20 million towards the early intervention grant which local areas can use for crime prevention and up to £18 million for youth offending teams to deliver front-line work, including knife crime prevention programmes. On 2 February, the Home Secretary announced further funding worth more than £18 million over the next 2 years to tackle youth knife, gun and gang crime. It includes £10 million for preventive and diversionary activities through the Positive Futures programme. This is a national prevention programme that targets and supports 10 to19-year olds who are on the cusp of, or who have desisted from, offending and helps them to move forward with their lives.

We want to increase the role of the community in tackling youth crime and anti-social behaviour at local level, including ensuring that young people have a strong voice and can influence neighbourhood priorities. We have published our intention to introduce a new remand order for under-18s that will simplify the system, and make local authorities, gradually and with support, responsible for the full cost of youth remand. This will reverse the perverse incentive that

30 Mar 2011 : Column GC188

currently exists whereby a local authority can benefit financially when one of its young people is placed in custody. We also intend to amend the Bail Act 1976 to remove the option of remand for young people who would be unlikely to receive custodial sentences.

The Government are also in agreement with the commission that there is still not enough emphasis placed on the importance of young offenders facing the consequences of their actions and paying back to society, and especially to victims, for the harm they have caused. Using restorative justice approaches, which were referred to by the noble Lords, Lord Imbert and Lord Dholakia, and a number of other colleagues, is a crucial element of this. We fully support the principles of restorative justice in bringing together those who have a stake in a conflict collectively to resolve it, both as an alternative to the criminal justice system and as an addition to it. Restorative justice is already a key part of youth justice and we want to encourage this across the youth justice sentencing framework.

The Government are also clear that in order to make real progress in reducing reoffending and protecting the public, we must look to do more to address the factors that cause the individuals to offend-the holistic approach advocated by the noble Lord, Lord Judd. A radical way in which we can achieve this is to free up professionals, and involve a wider range of partners from the private and voluntary sectors to take innovative approaches to dealing with offenders. I hope that the pamphlet from the CBI is an indication that we can engage the business community in this in a positive way.

Where a custodial sentence is appropriate for a young person, we must ensure that, having served it, they are resettled effectively to prevent further reoffending. Many of these vulnerable young people have no home, school or job waiting for them. Without the right support, many will reoffend or return to the gang culture referred to by the noble Baroness, Lady Doocey.

The proposals that we set out in our Green Paper seek fundamentally to change the incentive structure around resettlement. We want to ensure that local authorities take full responsibility for ensuring young people leaving custody do not return there, and incentivise work such as the resettlement consortia around the Hindley youth offenders institution in the north-west and Ashfield YOI in the south-west.

So many points have been raised with such experience from around the Room that one knows this debate could have gone on for much longer. We would have benefited from interventions from the likes of the right reverend Prelate the Bishop of Liverpool, who was with us, and the noble and learned Lord, Lord Woolf. Like the noble Lord, Lord Ramsbotham, I agree that many of the solutions have been around for a long time. What is needed is the political will to deliver. Perhaps we are at one of those moments when we can change the climate of the national debate away from that tabloid-driven hysteria to which the noble Baroness, Lady Doocey, referred to the kind of constructive solutions put forward in the debate today and by this report. The noble Baroness asked what happens next. What happens next is that we will respond in May to the consultation initiated by our

30 Mar 2011 : Column GC189

Green Paper. But this report, this debate and much of the thinking behind it will, I hope, constructively colour the nature of that response.

Lord Imbert: Before the Minister sits down, perhaps I may make an apology for having failed to declare an interest. As the noble Lord, Lord Dholakia, said, this excellent report was instigated by the Police Foundation, which is an independent think-tank dedicated to improving policing for the benefit of the public. I should have declared an interest in that I have been a member of the Police Foundation since it was formed by the late Lord Harris of Greenwich more than 20 years ago.

Lord McNally: I think that we can accept both that apology and that superb advert for the work of the Police Foundation.

Health: Neuromuscular Services

Question for Short Debate

4.48 pm

Asked By Baroness Thomas of Winchester

Baroness Thomas of Winchester: My Lords, I begin by declaring my interests. I am a trustee of the Muscular Dystrophy Campaign and have limb girdle muscular dystrophy myself. I raise this Question for Short Debate because there are significant gaps in accessing specialist neuromuscular care services in England, which I shall highlight. I have some questions about them for the Minister, who has been a welcome supporter in the past of the All-Party Parliamentary Group on Muscular Dystrophy.

On the positive side, some very encouraging steps have been taken by the Department of Health in developing a service plan. As I have no right of reply at the end of the debate, perhaps I may take this opportunity to thank all those who are to follow me and who will, I am sure, broaden out the debate into other areas involving neuromuscular services. I shall concentrate on muscular dystrophy and its related conditions.

There are more than 60 different types of this disease and related neuromuscular conditions, affecting about 60,000 people in England, both children and adults. These disorders can be genetic or acquired. Some conditions, such as Duchenne, which affects mainly boys, are particularly aggressive. They cause progressive muscle-wasting, weakness, orthopaedic deformity and cardiac and respiratory compromise, and result in premature death. It is possible, even in the 21st century, that many boys with Duchenne may die before they get beyond their teens if they do not have access to the specialist care they need. If specialist care, such as the provision of night ventilation, is available, then life expectancy can be more than doubled. This is why the provision of specialist services is so important. It can literally mean the difference between life and death.



30 Mar 2011 : Column GC190

Specialist multidisciplinary care has been developed by leading clinicians as the best model for delivering effective care for these complex multisystem diseases. The provision of expert physiotherapy and early heart monitoring, for example, has been shown to improve muscle function and maintain independent mobility. However, this kind of care simply is not happening everywhere yet, which demonstrates why a national neuromuscular services plan is so vital for all parts of the country. An example of what that plan should address is the problem of preventable unplanned emergency hospital admissions as it is estimated that as much as £68 million of unnecessary money is spent each year across England for people with these conditions.

While on the issue of hospitals, I should like to pay tribute to the clinicians and staff-and, in particular, to Professor Mike Hanna-at the National Hospital for Neurology and Neurosurgery in Queen Square here in London, who look after so many of us with muscular dystrophy in and around London. As it is a leading centre of excellence in this field, I know that they would welcome a visit from the Minister if he could find time in his busy diary. He will also learn about the exciting research going on there at present, which we all hope will lead to treatments in the near future.

I spoke a minute ago about the All-Party Parliamentary Group. We were delighted at the session on 9 March to learn that the NHS has taken ground-breaking steps towards a national neuromuscular service plan. Teresa Moss, director of the National Specialised Commissioning Team, told MPs and Peers that neuromuscular services will be a priority in the annual work plan of each of the 10 specialised commissioning groups across England, covering key issues such as specialist physiotherapy-which I hope includes my particular hobby horse, hydrotherapy-access to specialist equipment such as the right wheel chairs, an audit of unplanned emergency hospital admissions, the provision of well-qualified neuromuscular professionals across England, and the establishment of a single service specification defining specialist neuromuscular services. Each specialised commissioning group will nominate a multidisciplinary team to look at a range of issues to see what improvements can be made. This work will be used to support the national approach to the commissioning of specialised neuromuscular services. I hope the Minister will agree that this amounts to the first ever national strategy for neuromuscular services and is to be welcomed.

However, in welcoming this initiative, we should not forget the gaps-the significant gap being that there are currently no NICE guidelines for neuromuscular conditions which would give formal recognition to standards of care. Sir Mike Rawlins, the chair of NICE, suggested an application for NICE-accredited evidence status. An application for accreditation of a guidance manual has now been considered by the DMD Care Considerations Working Group, a cohort of 84 international experts in the condition. We also need a NICE quality standard on Duchenne, as well as one on home ventilation and respiratory support. Will my noble friend the Minister consider writing to NICE to endorse such requests?



30 Mar 2011 : Column GC191

On the Health and Social Care Bill, there is a great concern that GP and commissioning consortia may be tempted to concentrate on the delivery of services for patients with serious but common conditions, and that services for people with rare and very rare diseases may slip down the agenda when the new arrangements are in place. This worry is centred on the fact that many GPs may not see more than a few cases of patients with rare diseases in their working lives and may be not only unfamiliar with the disease but totally ignorant of the care pathway. We do not yet know the shape of any sub-national structure to the NHS Commissioning Board, and we do not know, for example, how this structure will change from the present boundaries that the strategic health authorities and specialised commissioning groups cover. I should be grateful for any steer that my noble friend the Minister can give.

In the short time that I have left, I want to raise two further matters-both in the positive camp. The first is the inspirational work done by the NeuroMuscular Centre in Cheshire-the only one in the UK. It provides not only specialist physiotherapy and hydrotherapy but employment and training through its social enterprise company, NMC Design and Print. It receives no government grant at all and is a self-sustaining model, earning fees from PCTs for its physiotherapy work, income from its business services, and fund-raised income from the local community. There is now a group of local people and families in Birmingham who are already committed to raise funds to help to start a similar neuromuscular centre in the West Midlands. If the Minister would be willing to hear more about these projects, the Muscular Dystrophy Campaign would be delighted to tell him about them.

Finally, I cannot let this opportunity go by without mentioning the importance of hydrotherapy to those with muscular dystrophy. It is particularly beneficial to wheelchair users but it is, inexcusably, a very hit- and-miss service countrywide, and a worrying new development is that many hospitals are closing their pools on the grounds of either cost or so-called health and safety. Private hydrotherapy pools are extremely expensive. There is, astonishingly, a paucity of research with hard evidence about the benefits of hydrotherapy, although there is plenty of anecdotal evidence. It is high time that it was prioritised as an accessible, affordable service.

Phillippa Farrant, the mother of Daniel Farrant, who has Duchenne and is now 19, is quoted in the Walton report as saying:

"Daniel gets hydro at school but not in the holidays because there is nowhere locally. There is a hydro pool at the local hospital, but we can't get funding for Daniel to use it. If a group of us would like to use it, the hospital would charge us £200 for a half hour session. There is a local school for disabled people with a hydro pool, but we can't get access to that, it's only there for the school pupils so that sits empty in the holidays as well. There are community nurses from the hospice who would be willing to take these children for a session, even if only for once a week".

Another wheelchair user, Laura Merry, who, together with her twin sister, has congenital muscular dystrophy, explained in the Walton report that hydro once a week costs them £20 each for 40 minutes, and that was a couple of years ago. She said that it helps her lungs and muscles a great deal.



30 Mar 2011 : Column GC192

Since I asked a Question in the House about hydrotherapy at the beginning of the year, I have had letters and e-mails from many people, including the Mercia Hydrotherapy Self Help Group, whose members mainly suffer from arthritis. They are devastated because their local hospital pool in Shrewsbury has closed. All these hydrotherapy users say the same thing, which is that this particular activity helps them immeasurably to help themselves both physically and mentally, and that it needs much better recognition by the Department of Health.

I hope that I have demonstrated why it is vital for a national neuromuscular services plan to be brought in speedily by the NHS, not only to fill in the gaps in current provision but to improve and enhance the lives of those who live with these diseases.

4.58 pm

Baroness Wilkins: My Lords, I thank the noble Baroness, Lady Thomas of Winchester, for securing this debate and I congratulate the All-Party Parliamentary Group for Muscular Dystrophy-and particularly the noble Baroness, Lady Thomas, for her part in it-on its excellent work in putting such a clear focus on the current significant gaps that exist in neuromuscular care services and the improvements that are required.

The noble Baroness, Lady Thomas, has given us an excellent overview of the current situation and the positive steps being taken by the Department of Health to address the problems. However, we are living at a time of great upheaval in the NHS, much of which already seems to be under way, even though the underpinning legislation has not been fully debated, let alone passed. Therefore, how can we ensure that any improvements will be maintained?

I should like to talk about my concerns in relation to the sub-national structure of the proposed new NHS Commissioning Board and the commissioning of specialised services, which, as we have heard, are crucial for people affected by neuromuscular conditions.

As we have heard, significant progress has been made regarding improvements to neuromuscular services with an increase in the number of muscular dystrophy care advisers across England. I welcome the fact that all 10 specialised commissioning groups either have reviewed or are reviewing services for people with neuromuscular conditions, and that vital work is under way to improve access to specialised neuromuscular services. This work must be maintained in a structured approach as the new NHS Commissioning Board undertakes commissioning of specialised services.

Currently, neuromuscular services are commissioned on a regional basis by the 10 regional NHS specialised commissioning groups, with top-slicing of the PCTs. This method of commissioning these rare and very rare conditions has been endorsed by a new body of experts, the British Myology Society, which is a multidisciplinary forum of consultant-level experts on muscle disease, myasthenia gravis and spinal muscular atrophy. What will be the regional boundaries and structures that will be created under the new NHS Commissioning Board? Will the Minister also say how the transition to the new commissioning arrangements will be managed? Can he give an assurance that the

30 Mar 2011 : Column GC193

development of neuromuscular services will not be interrupted by the changeover to the new commissioning set-up?

As I said earlier, the work of the all-party parliamentary group has been outstanding in focusing attention on the service. At a meeting earlier this month, Teresa Moss, director of the National Specialised Commissioning Team, outlined ground-breaking steps towards a national neuromuscular services plan, which is a hugely welcome development for people affected by muscle disease across the country. As she said:

"I am pleased to share the good news that a national working group has been set up, with representatives from each of the SCGs across England as neuromuscular services will be a priority in next year's work plan for the ten Specialised Commissioning Groups and the National Specialised Commissioning Team.

This is the first time that a coherent, national approach has been taken with regard to the planning and coordination of specialist neuromuscular services and I look forward to working with the Muscular Dystrophy Campaign, clinicians, commissioners and people living with muscle disease across England to take this important work forward".

In the light of that, will the Minister outline how the Department of Health will publicise the details relating to the national neuromuscular services plan to the relevant health professionals throughout the service and, most particularly, how it will publicise details to people who are affected by muscle disease?

Finally, the Muscular Dystrophy Campaign has serious reservations regarding the impact of the proposed move to GP commissioning for non-specialised primary and secondary care for the 60,000 children and adults in England with muscular dystrophy and related neuromuscular conditions. Will the Minister clarify how specialist services commissioned by the NHS Commissioning Board and more generic services commissioned by GP consortia will link together?

5.03 pm

Baroness Jolly: My Lords, I should like to outline some issues around the treatment, care and quality of life of those with motor neurone disease, and then give an example of how the NHS in the south-west is dealing with Duchenne muscular dystrophy. I will conclude by gathering together points for my noble friend to consider in the context of research, NICE and commissioning these services in the new NHS.

Motor neurone disease is a disease of low prevalence but high need and very high cost. MND is a progressive neurodegenerative disease that attacks the upper and lower motor neurones. Their degeneration leads to weakness and wasting of muscles, causing increasing loss of mobility in the limbs and difficulties with speech, swallowing and breathing.

Perhaps I may tell the Committee about Patrick, an artist who was diagnosed in 2008 with MND. Patrick is determined to live a life that is as full as possible with his wife Kathy and three young children. He said:

"I have found out first hand what MND does to individuals and their families. I am gutted that I won't get to see my children grow up. It's like watching a great film and not being able to see the end. I want to help stop this. I want to get better care for me and my fellow sufferers and I want a cure. To do this we need to raise awareness and get more money for research. I will not get to see my daughter go to school and want to do anything I can to stop that happening to others".

A salutary tale.



30 Mar 2011 : Column GC194

The rapid progression and wide range of symptoms mean that people with MND have complex and demanding care and support requirements. Someone with motor neurone disease may need as many as 18 health and social care professionals providing care at any one time-a complex care pathway and one that will differ from patient to patient. In the UK, the MND Association estimates that good care costs around £200,000 per person per year. However, where poor care results in crises and unplanned hospital admissions, this cost can easily double or even triple.

Fortunately, the numbers are low-around 5,000 in the UK, an incidence of around seven per 100,000. Here, I echo the call of my noble friend Lady Thomas: there is currently no national guidance for MND, and the MND Association is calling for the National Institute for Health and Clinical Excellence to produce a clinical guideline and a quality standard.

My noble friend Lady Thomas has spoken with personal experience of muscular dystrophy. In 2007 in the south-west of England, which is where I live and where 5,000 children and adults are living with muscular dystrophy, on average a young man with Duchenne would die at the age of 18-and that, compared with the average in the north-east of 30 years, was unacceptable. It was thanks to an effective campaign run by members of the public-families affected by this condition and parliamentarians-ably assisted by Muscular Dystrophy Campaign, that a south-west muscular dystrophy clinical network was set up. This was wonderful news for the families affected: it meant that journeys to Oxford or Oswestry for treatment-from Penzance, Cornwall or wherever- would be a thing of the past. This managed clinical network, set up by the south-west commissioning group, is making a huge impact across the peninsula, from Truro to Bristol to Exeter and Salisbury, providing three consultants, three and a half specialist physiotherapists, care advisers, a psychologist and extra support. It is seriously good news and costs PCTs in the region less than £9 per patient per month.

By setting up this service, its importance was recognised by the strategic health authority. Both motor neurone disease and muscular dystrophy Duchenne services will need expert commissioning. Smaller GP commissioning consortia will see very few of these patients from year to year. Motor neurone disease does not even figure on NICE's radar. I would be grateful if the Minister could shed some light on how the proposed NHS Commissioning Board will deal with the commissioning of these services after NHS reorganisation. Would he also indicate the willingness of the Government to include motor neurone disease in NICE guidelines and indicate what levels of research support, and from where it might come, will be given to these organisations that work so hard for this small but important group of patients?

5.09 pm

Sitting suspended for a Division in the House.

5.19 pm

Lord Luce: My Lords, there is nothing more powerful than the voice of a patient who has had long experience of a particular condition. Therefore, we should be very

30 Mar 2011 : Column GC195

grateful to the noble Baroness, Lady Thomas, for introducing the topic of this important debate-which, as she said, affects at least 60,000 people with muscular dystrophy-and for the expression of her desire for a national neuromuscular plan, which I am sure would be beneficial.

I should like to limit my remarks to the one aspect that I know something about-chronic pain-and how pain management services can help the many who suffer from neuromuscular problems. I am grateful to the noble Baroness for encouraging me to speak on that aspect.

I have experienced chronic pain for nearly 40 years. Much more important is that, as we know, 8 million people in this country suffer from chronic pain, take up 4.5 million appointments with doctors and cost the National Health Service about £70 million. I was interested to read a report written by Dr Jensen two or three years ago along with some of his medical colleagues. It was the product of examining the effect of pain on neuromuscular disorder, which affects a number of people, particularly those with special types of muscular dystrophy.

Dr Jenson concluded that there is no effective or consistent treatment of pain for those people. There is no easy access or tailor-made service for people who suffer from pain, and there should be. That fits very strongly with the recommendations of the previous Chief Medical Officer, Sir Liam Donaldson, who recommended that there should be rapid and easy access to pain clinics so that early assessment can be given. What interested me in the report was that those suffering from neuromuscular disorder mentioned no fewer than 25 current different kinds of pain treatment. I should like to spend a minute or two examining some common factors between neuromuscular services and pain management services.

The first thing that strikes me is that both need multidisciplinary care. For example, we all need GP advice on medical aspects. Many people need psychotherapy because, for example, stress exacerbates pain. We need physiotherapy. We need hydrotherapy. I am particularly pleased to support the words of the noble Baroness, Lady Thomas, in suggesting that there should be more intensive research into the value of hydrotherapy. I accept that these pools must be very expensive to run. I have seen several of them and used a number myself. One run by the West Sussex Primary Care Trust in Bognor had integrated musculoskeletal, rheumatology and pain management services. I have seen how important hydrotherapy is to the treatment of all these people.

However, I am sad to have learnt this week that a hospital in Leicester has lost its hydrotherapy pool. I assume that that is because of cost pressures. As part of the overall research that I hope will be done, it is important to find out how hydropools can be shared among several specialist services in order to make best use of very limited resources. I know that that may be difficult but, if we want to keep them going and introduce new ones, it may be important.

I am also interested in how multidisciplinary services can be shared in other areas. For the sake of argument, I do not know the extent to which physiotherapists, in

30 Mar 2011 : Column GC196

whose field there is so much specialism now, cannot handle the combination of pain management for muscular dystrophy pain and osteoporosis. However, it is important to look at where these multidisciplinary services can be shared. As a layman, I would say that there is too much compartmentalisation in the health service, even now.

Then there is the question of local lotteries, with varying standards of services. The National Pain Audit, which is now taking place, is looking at best practice in various parts of the country. That is the best way of trying to establish a national minimum standard throughout the country. I hope that the same will happen for neuromuscular services and that best practice can be examined.

That leads me naturally to the National Institute for Health and Clinical Excellence because NICE issued guidelines on the early management of persistent low back pain, which I strongly welcome. However, it needs guidelines, as the noble Baroness and other noble Lords have said, for quality care in neuromuscular conditions across the country. I hope that NICE will introduce those.

We should be aware also of the importance of preventive early intervention in the both the areas that we are talking about. The noble Baroness and other speakers referred to hospital admissions for muscular dystrophy which could have been avoided. The same applies to pain in people who, for example, are trying to hold down jobs. Preventive work can do a lot to keep people in their jobs or to enable them to return to their jobs early. Dame Carol Black's report of 2007 on the health of Britain's working-age population contains a lot of important recommendations.

We shall be debating GP commissioning consortia a great deal. We must be aware that doctors will have to grapple with many priorities in the commissioning and delivery of a large number of specialised services. They will need to be equipped with information and training as to what action is needed to best help patients with specialised problems and the multidisciplinary assistance available. That will be of the highest possible priority when we come to debate the Bill.

What matters at the end of the day is finding ways, with the help of the medical tools available to us, to enable those who suffer to manage their own problems as best they can to give them hope and help them to improve the quality of their life.

5.26 pm

Baroness Brinton: My Lords, I thank the noble Baroness, Lady Thomas, for instigating this vital debate and confess to an embarrassingly limited knowledge of neuromuscular diseases compared with those who have spoken already. However, because of my experience with rheumatoid arthritis, I hope that your Lordships will allow this patient with creaky joints a brief contribution on the attitude and practice of PCTs and GPs in providing appropriate specialist physiotherapy.

The NICE guidelines, where available, are a very good illustration of how one can help a patient with a life-limiting illness with an holistic service. The guidance for those with MS is as comprehensive as the guidance

30 Mar 2011 : Column GC197

for those with rheumatoid arthritis, with which I am obviously more familiar, but there needs to be more for other neuromuscular diseases as a matter of urgency. As the noble Baroness, Lady Jolly, commented earlier, this is becoming the theme of this debate.

Page 19 of the MS guidance states that,

The theory of this is fine, but having talked to friends at our Tai Chi for arthritis class in Watford, which includes those with MS, I know that the reality can be patchy. With budget pressures on PCTs at the moment, it becomes very easy to dilute that support for patients.

For example, I have heard that at the end of last year my own PCT, West Hertfordshire, was considering creating its own "first line" of physiotherapy for patients not already referred to the hospital. At a practical level, this would mean that physios at the hospital would not be needed and would be sitting around with empty appointments lists. Much more worryingly, patients would be seeing a general physiotherapist who did not have the specialist training needed for neuromuscular diseases or diseases such as RA, when they needed to be seen by specialists right from the start.

This early specialist intervention is vital. In my own case, I see a physiotherapist, a hand specialist in OT and an orthortist, all of whom are there to ensure that I keep as much mobility and flexibility as possible and avoid serious joint deformity. Members may see me doing peculiar hand exercises at odd times. It is not semaphore; I need to keep my fingers and wrists moving before they completely stiffen up. Patients who do not get access to this specialist physio and OT support tend to lose mobility earlier and are more likely to give up working sooner than their colleagues who are getting that help. For those with neuromuscular conditions, maintaining the tone of muscles is also vital. It is vital for their independence. Frankly, it is vital also for the cost to the country of supporting them.

I gather that there was an outcry at the proposal from my PCT for a "first line" general physiotherapist and it was quietly dropped. However, I remain concerned that, in the current tight financial world, money becomes the order of the day, making it easy to curtail these services. I was also interested in the comments of the noble Lord, Lord Luce, about limited access to pain clinics. They are absolutely vital. In my own PCT, referrals take many months-often more than a year-which is hopeless if you are in severe pain and need support.

I also have concerns about the ability of GPs, with the pressures on their time, to plug patients into the specialist services. The NICE guidance for MS runs to 218 pages, with the one for patients and the public a mere 64 pages. Hard-pressed GPs, who may see very few patients with these diseases, cannot keep all the different details of NICE guidance in their heads, and new patients often do not know to what they are entitled. It is a Donald Rumsfeld situation: you do not know what you do not know. However, being fairly

30 Mar 2011 : Column GC198

brazen, I asked my GP for help with my support early on, and she and I read through the guidance together and mapped out a plan. She said that, until I asked her, she had not been aware of the entitlement to the full range of physiotherapy support. I do not blame her for that at all. There is no way that a GP can know all there is to know about every bit of NICE guidance. I add in parentheses that the NICE guidance is seriously impressive and, if we use it as a standard, that will be fantastic. I return to the point that I made earlier-the receipt of this support by patients is very patchy.

I also know from talking to other RA and MS patients in my area that they had no idea at all that they were entitled to specialist physiotherapy services, and, more worryingly, nor did their GPs. I suspect that the same is true for those with neuromuscular diseases. Therefore, I ask: how much more difficult is it for those with more rare diseases to access the services to which they are entitled where there are not even NICE guidelines?

I welcome the proposals for a national neuromuscular services plan, but I ask the Minister to ensure that a simple handy guide is made available to GPs for them to use when a patient is first diagnosed to make sure that the patient gets access to physiotherapy support as early as possible. In that way, we can move to one consistent standard of service and improve the outcome for patients.

5.32 pm

Baroness Thornton: My Lords, the noble Baroness, Lady Thomas of Winchester, has rightly been raising these issues in the House since her welcome arrival here, and I have lent her my support whenever I have been able to do so.

The Muscular Dystrophy Campaign website asks all parliamentarians to take an interest in what the future holds for people with neuromuscular disorders, so this debate is very appropriate. Over the past few years, we have had the Walton report, led by the noble Lord, Lord Walton of Detchant, and the all-party parliamentary group. We have also had the Thomas report in the Welsh Assembly, so named after Ray Thomas, a tireless campaigner in Wales whose sons both had Becker muscular dystrophy, and the Mackie report in the Scottish Parliament. It was very wise to cover all three nations.

The three reports that have been produced, together with their recommendations, provide a focal point for the continued battle to ensure that action is taken to address the significant gaps in the provision of specialist neuromuscular care and to implement service improvements. I take this opportunity to congratulate the Muscular Dystrophy Campaign on its tireless and very effective work in raising the profile of the different and severe orders and also on the fact that it points without fail to the challenges, and sometimes the hardships, suffered by the families of people with these disorders. I shall not go into detail about the different types of muscular dystrophy, as the noble Baroness, Lady Thomas, has already done that, save to say that 1,000 children and adults out of every million people in the population are affected by muscle-wasting neuromuscular diseases in England. These

30 Mar 2011 : Column GC199

disorders cause progressive muscle wasting and weakness, and they often result in premature death and lifelong disability. They often start in childhood or young adult life. As we know, the diseases are sometimes genetic and sometimes they are acquired.

Perhaps I may say how much I welcome the national programme of work for neuromuscular services that has been announced. The 10 regional NHS specialised commissioning groups, or SCGs, and the national specialised commissioning team met earlier this year and agreed a national programme of work around neuromuscular services for the year ahead and that the outputs of that work will be used to support a national approach to commissioning specialised neuromuscular services. Their 10-point plan is absolutely admirable, and I should like to highlight some of the things that are in it. They are: to write a service specification for specialist neuromuscular services; to carry out an audit of unplanned emergency admissions for patients with neuromuscular conditions; to clarify the current arrangements across England for access to genetic testing in order to obtain a clearer understanding of what genetic testing is being undertaken; to understand the current workforce of community physiotherapists and key community-based staff to identify what skill development is required; to create a service directory for each neuromuscular service, which would mean that healthcare professionals such as GPs would have access to a database containing standardised information; to understand the current arrangements for access to specialist equipment and to map that across the country to find gaps to understand the current arrangements for access to non-invasive ventilation; to make sure that neuromuscular patients have their specific needs for end-of-life care and that the national end-of-life work programme has considered the specific needs of patients with neuromuscular disease; to support the development of neuromuscular networks when they are appropriate; and to collate and review the various SCG reviews of neuromuscular services.

I thought that it was worth listing those points. I am sure that the noble Earl is going to go into more detail about them, but I thought that it was significant that after a meeting with the Muscular Dystrophy Campaign the Minister said in a letter to the noble Lord, Lord Walton of Detchant, that there are,

That is exactly right.

Given that we know that comprehensive neuromuscular services should be designated within the specialist services national definition set, an audit of current services should be undertaken and the Department of Health should work with the emerging British Myology Society, mentioned by my noble friend Lady Wilkins, in approving a standard diagnosis and care for neuromuscular conditions. Is it possible that this progress will be able to be maintained under the current circumstances, both in the short, medium and long term? My question, echoed by virtually every the noble Lord who has spoken today, is: how will the specialist services weather the transition in the short term, when strategic health

30 Mar 2011 : Column GC200

authorities and PCTs are disappearing and the GP consortia are being created? Indeed, how will we ensure that GP consortia will be able to recognise and commission for these rare diseases, picking up what commissioning has produced at a national level? Will the national commissioning use the 10-point plan? How will services such as hydrotherapy be delivered? The Minister will remember that I asked this question when we discussed this in the Chamber some months ago with the noble Baroness. This is an expensive but very effective therapy. Furthermore, what research are the Government supporting? How are they investing in research? Would the research be able to look at things such as the effectiveness of hydrotherapy and the pain management mentioned by the noble Lord, Lord Luce? I echo the point about NICE guidelines and look forward to hearing the Minister's reply.

5.39 pm

The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): My Lords, I am grateful to my noble friend Lady Thomas for raising extremely important issues and to other noble Lords who have contributed with such knowledge to the debate today. I join my noble friend in paying tribute to the Muscular Dystrophy Campaign, which has been such a powerful advocate for those affected by these lifelong and life-limiting conditions, and to the All-Party Parliamentary Group for Muscular Dystrophy, which has done so much to keep these important matters on the agenda. Although he is not in his place this afternoon, I cannot let the opportunity pass to remark that the noble Lord, Lord Walton of Detchant, is not only an active member of the all-party group but one of the founders of the Muscular Dystrophy Campaign in 1959. That really is a testament to both his commitment and his stamina.

The subject of the debate is, "What is the Government's assessment of specialist neuromuscular services?". For large parts of the country, I am afraid that the answer is clearly "not good enough", and perhaps "poor" in some parts. We know that there are historic weaknesses, which noble Lords have drawn attention to during today's debate. The urgency for change is all the greater because these failures have a massive impact on the lives of people with these conditions. There are around 5,500 emergency bed days a year for people with neuromuscular conditions, with all that that entails for them and their families.

The Health and Social Care Bill is clear that highly specialised services, as set out in the Specialised Services National Definitions Set, will in future be commissioned by the NHS Commissioning Board. This presents a real opportunity to streamline decision-making, funding, planning and commissioning of all specialised services, and to achieve greater consistency by doing it once through the Commissioning Board, rather than 10 times locally. I know that the all-party group received a progress report from staff in the specialised commissioning group on 9 March. I also understand that the all-party group and the Muscular Dystrophy Campaign liked what they heard about the excellent progress already made by the existing regional specialised commissioning groups and about how the national group's work plan will prioritise neuromuscular disease in 2011-12.

30 Mar 2011 : Column GC201

The work plan will focus on the key issues for people with neuromuscular disease from service specifications to emergency admissions, and from access to services and workforce models to specialist equipment and non-invasive ventilation. Many of the subjects raised by noble Lords, such as hydrotherapy and physiotherapy and so on, will be embraced in that exercise. However, I think we need more. We need a high degree of integration across the care pathway to deliver more person-centred approaches to planning specialised services. People with conditions such as muscular dystrophy need more than just highly-specialised tertiary care; they need, and have every right to expect, the same community-based services that so many others enjoy. The ongoing care that is so important for supporting quality of life and keeping people out of hospital includes hydrotherapy and wheelchair services; speech and language therapy and respiratory support; and help with swallowing. These services need to be commissioned locally by those close to patients and their families. This is currently a job for primary care trusts, not the specialised commissioning teams. My noble friend Lady Thomas raised doubts, echoed by the noble Baronesses, Lady Wilkins and Lady Thornton, about the emphasis that GP consortia may place on these services. I absolutely accept that better co-ordination and better integration between commissioning teams and a more person-centred approach to planning across the whole care pathway rather than individual bits of it are all essential. Clearly, integrated planning between GP consortia and the NHS Commissioning Board will be vital, just as joint working between PCTs and specialised commissioning groups is today.

The best answer that I can give on this is to refer to the strength and accountability mechanisms that we plan to put in place. They include the role of health and well-being boards at local authority level; the joint strategic needs assessment and joint health and well-being strategies, which will inform and guide local commissioning decisions; the overarching commissioning outcomes framework, by which consortia will be held to account; the place of the patient experience within that framework; the transparency of consortia performance; and the role of HealthWatch, which will act as the local voice of patients and the public and which will be in prime position to feed in grassroots opinion and experience to local planning, not least through its membership of the health and well-being boards. Once again, the points raised by the noble Baroness, Lady Brinton, on access to physiotherapy services and the noble Lord, Lord Luce, on hydrotherapy pools are things which, I have no doubt, will come into the compass of the health and well-being boards.

A consistent message which I have heard and which my noble friend reiterated today is that clear guidelines from NICE to cover muscular dystrophy, home ventilation and respiratory support would improve matters immeasurably. I hope that noble Lords will understand that it is not for me to direct NICE-its strength lies in its independence from government and I am not going to compromise that-but the new system will see quality standards commissioned from NICE by the NHS Commissioning Board. It will want to have quality standards for those topics that will help it to

30 Mar 2011 : Column GC202

meet its outcome goals. Because of the focus on outcomes, a new approach for topic selection is being developed, overseen by the National Quality Board, which will allow stakeholders to comment and suggest topics. NICE welcomes that engagement from voluntary and patient groups, not only in the strategic sense but also on matters of detail.

I have already paid tribute to the Muscular Dystrophy Campaign for its achievements and to the all-party group. I am afraid that I must break some bad news: their work is not yet done. The NHS is changing-there is a great deal of work to be done to make it more responsive to patients and their families, and it cannot do this alone. GP consortia will need advice and guidance as they take the reins; NICE is already talking with the neurological leadership group on how it can develop stronger clinical advice; and the National Quality Board is working on a broad library of quality standards for NHS care. These are opportunities for the Muscular Dystrophy Campaign and others to feed in their accumulated knowledge and expertise, either directly or through the Neurological Leadership Alliance.

My noble friend Lady Jolly and the noble Baroness, Lady Thornton, asked about research. The Medical Research Council is, of course, independent of government. We have ensured that its budget for the period of the comprehensive spending review remains intact; its resource expenditure can be maintained in real terms. However, it remains the case that the selection of projects for MRC research funding is determined through peer review.

The noble Baroness, Lady Wilkins, asked about the sub-national structures of the NHS Commissioning Board and how the capacity and capability of services will be sustained during the transition. I fear that much of this falls into the category of work in progress. It is definitely not only on the radar of the department but is the subject of active work as I speak. A priority during the transition period will be to ensure that key capacity and capability are sustained through to April 2013 in order to support delivery. As the noble Baroness may know, the Government are proposing a managed consolidation of PCT capacity in order to create transition clusters. These will be administrative mergers similar to those that have already taken place in London and the north-east.

My noble friend Lady Thomas asked whether NICE should conduct a detailed review of its guidance, particularly as it relates to Duchenne muscular dystrophy. I spoke to the noble Lord, Lord Walton, about this the other day and encouraged him to feed in this view to NICE directly. I well understand why the request has been made.

My noble friend Lady Thomas also asked about quality standards. For the NHS, the new system will see quality standards commissioned from NICE by the NHS Commissioning Board. It will want to have quality standards for those topics that will help it to meet its national outcome goals. The remarks I have made about the process of feeding in to NICE apply equally there as well.

The noble Lord, Lord Luce, asked about training for GPs to deal with specialised services. As he knows, the Department of Health does not specify the content

30 Mar 2011 : Column GC203

of training curricula; that is determined by regulatory requirements and the needs of the service. Comprehensive information to support clinical decision-making is included on NHS Evidence, the new single web-based portal hosted by NICE which provides all health and social care professionals with authoritative clinical and non-clinical evidence and best practice. NHS Evidence provides access to a range of information, including primary research literature, practical implementation tools, guidelines and policy documents. It is improving all the time and is widely used.

My noble friend Lady Brinton asked whether we would think about producing simple guidance for GPs to commission services for specialist conditions. I am happy to feed that suggestion into the NHS Commissioning Board, whose responsibility it will be.

The noble Baroness, Lady Wilkins, asked whether the department might publicise updates on the work plan to the NHS. I shall write to her about that.

I am grateful to my noble friend for the opportunity to discuss these important issues and I thank all noble Lords who have made contributions. We know there is much to do to improve the care of those with neuromuscular and other long-term conditions. At the same time, I am confident that by modernising the National Health Service we will improve the lives of patients with these conditions across the country.

Health: Polymyalgia Rheumatica and Giant Cell Arteritis

Question for Short Debate

5.51 pm

Asked By Lord Wills

Lord Wills: My Lords, the Government have said that their approach to the NHS is founded on the principle of doing more for less. I have asked for this debate today to suggest a way in which the Government might do this by preventing thousands of people in this country from going needlessly blind every year. Giant cell arteritis is the most common form of vasculitis: an inflammatory disease of blood vessels, most commonly of the arteries in the head. It is, in effect, a stroke in the eye. If diagnosed in time, it can be easily and cheaply treated with steroids; untreated, it leads to blindness in 25 per cent of cases. It is one of the most common causes of acute blindness in this country.

It has been estimated that around 3,000 people a year go blind needlessly as a result of giant cell arteritis, because their doctors failed to diagnose their condition in time and provide sufficiently rapid treatment. That is a tragedy for those afflicted and their families, so why is it happening? Why are thousands of these avoidable tragedies happening every year? The symptoms are everyday: headaches associated with scalp pain and pain in the jaw or tongue. It is also common to see systemic low-grade fever, weight loss, loss of appetite,

30 Mar 2011 : Column GC204

depression and tiredness. Once symptoms present, an early temporal artery biopsy or ultrasound can effectively confirm a diagnosis of giant cell arteritis but urgent treatment needs to be started as soon as possible to prevent the risk of blindness.

However, far too often GPs miss the symptoms. This is often an affliction of older people and the symptoms are too commonly categorised as merely the aches and pains of ageing. Up to 3,000 people a year go blind as a result. Moreover, best clinical practice suggests that patients with suspected giant cell arteritis should be started immediately on high-dose steroids, not wait for specialist review. The precautionary approach is not usual practice for many general practitioners, not least because it is often not appropriate for other complaints. Far too often, patients are prescribed the wrong treatment and too late.

The problem arises from a combination of symptoms that, taken in isolation, could indicate a wide range of complaints, serious and less serious. There is the need for speed in treatment, which is required for few other complaints in the same way, and a precautionary approach which is not indicated in the same way for many other treatments. Yet there are such significant, differentiating characteristics about the symptoms so that giant cell arteritis ought to be easy to diagnose as long as GPs are sensitised to them. Headaches are common but sudden onset headaches and headaches over the temples are less common. Those categories of headache are key indicators for giant cell arteritis. Even in the minority of cases where headaches are not present, there will be other constitutional symptoms such as weight loss and loss of appetite. Jaw and tongue pain are red flag warnings. Visual disturbances such as double or blurred vision, or the transient loss of vision, are other powerful indicators for immediate treatment.

Dedicated clinicians and support groups have been working tirelessly to reduce the number of these avoidable incidents of blindness by raising awareness among clinicians. The British Society for Rheumatology, British Health Professionals in Rheumatology and the Royal College of Physicians produced guidelines for the management of giant cell arteritis 18 months ago, but the persistence of problems with diagnosis and appropriate treatment suggests that they need support if they are to make significant progress. I am afraid that they do not appear to be getting that.

5.56 pm

Sitting suspended for a Division in the House.

6.05 pm

Lord Wills: My Lords, before we were called to do our democratic duty, I was saying that the persistence of problems for the diagnosis and the treatment of giant cell arteritis suggests that all the good work being done by clinicians' bodies needs support if they are to be able to make significant progress, and they do not appear to be getting it. I asked the Government in a Written Question last October what steps they

30 Mar 2011 : Column GC205

had taken to promote among general practitioners' knowledge and understanding of those guidelines. The reply stated:

"All healthcare professionals are accountable, through their professional regulator, for keeping up to date with the professional guidance relevant to their area of clinical practice".-[Official Report, 6/10/10; col. WA21.]

In other words, it was nothing to do with them.

Of course, government departments should be wary of interfering with the professional judgments of clinicians, but when there is such an obvious and persistent problem, government must not simply stand aside. Apart from all the human misery caused by this unnecessary blindness, it costs the NHS millions of pounds a year that could easily be saved. I asked the Government, again in October last year, what estimate they had made of the costs of such unnecessary blindness. The reply stated:

"The department has made no estimate of the cost to the National Health Service of treating vision loss in those whose giant cell arteritis was not diagnosed early".-[Official Report, 6/10/10; col. WA20.]

I am surprised. Three thousand people a year are going blind unnecessarily and the department has not made any financial analysis of the problems.

Still, I shall try to help. The costs will include clinical treatment and social care, both for those afflicted and those who care for them or who were cared for by them. Some estimates have suggested that the annual cost to the Exchequer of blindness for an individual could exceed £20,000 a year. It could be considerably more than that, but let us take that figure. The cost of those 3,000 people going blind every year unnecessarily could run to around £60 million a year. In the absence of any calculation by the department, this is the figure that I am afraid we have to work with.

Of course, this cost accumulates year on year. Over the five-year period for which this Government are legislating for themselves to be in power, the total cost of such unnecessary blindness could come to nearly £1 billion. If we offset against that the cost of steroids-let us say £100 a year for two years for each patient-it still leaves a net cost to the taxpayer of around £900 million. Unless the Government act to help stop such unnecessary blindness, they run the risk of forcing taxpayers to go on paying costs running cumulatively into billions of pounds-not millions or hundreds of millions-while inflicting incalculable misery on those sufferers, mostly pensioners, who are already at the most vulnerable stage of their adult lives. I emphasise that this does not mean the loss of vision alone, although that is tragic enough. It also means, all too often, the loss of independence, with elderly people who had been able to live in their own homes being forced to go into residential care. I hope that the Minister will understand why I am today pleading with him to do more. I have four suggestions.

The Department of Health is conducting a consultation to expand the list of "never events". This is a welcome initiative and I congratulate the Government on taking it forward. Never events are defined as,



30 Mar 2011 : Column GC206

It is hard to imagine a better fit for this definition than blindness in giant cell arteritis. Causing blindness must qualify as "serious"; it is certainly "largely preventable"; and it clearly would not occur if the available preventive measures, early diagnosis and rapid treatment with steroids, had been "implemented by healthcare providers". I hope that the Minister can say now that his department will seriously consider making blindness from giant cell arteritis a never event. I should be grateful also if he could confirm to me today that if, when it has reached its conclusions after the consultation, his department decides not to make giant cell arteritis blindness a never event, he will write to me explaining why it has rejected this opportunity to prevent thousands of individual tragedies every year and to save the taxpayer millions of pounds.

My second request to the Minister is to ask NICE to make an appraisal of giant cell arteritis services in order to produce guidelines. As he is aware, NICE guidelines are mandatory for commissioning groups and acute trusts and, coupled with appropriate awareness programmes, this could transform consciousness of this illness and radically improve outcomes for those afflicted by it.

Thirdly, can the Minister please raise the profile of this issue by discussing it in a landmark speech? He has earned his reputation in your Lordships' House as an unusually thoughtful and conscientious Minister, and such a speech by him would only burnish that reputation.

Finally, can the Minister please communicate directly with GPs on the importance of early diagnosis of this disease through one or more of the mechanisms through which the Department of Health communicates to GPs, whether it is a "Dear colleague" letter, a Chief Medical Officer update or letter, or regular mention in the GP and practice team bulletins?

What impact might such consciousness-raising measures have? The best evidence comes from the treatment of strokes. In 2009, the Department of Health launched the Act FAST campaign to boost awareness of strokes, promoting a simple test to recognise the signs of strokes and act quickly. As the Minister will be aware, swift diagnosis and treatment can limit damage in the brain and increase the chances of survival. The Department of Health committed to a three-year £100 million stroke strategy in England. When I asked in a Written Question last year what assessment the Government had made of the impact of the campaign, the Minister said that it,

If the previous Government could take such impressive action on strokes, and if this Government can so commendably carry on that good work, I hope they can now take similar action over strokes in the eye. We now know from Act FAST that such consciousness-raising campaigns work. Such an approach to giant cell arteritis will save thousands of people going blind and could save the taxpayer up to £1 billion by the time of the next election. There really can be no possible excuse

30 Mar 2011 : Column GC207

for the continuing inertia, and I look forward to hearing what commitments to improvement the Minister can make today.

In conclusion, I should be grateful if the Minister would agree to meet me, concerned professionals and representative patient groups to discuss what further measures might be possible.

6.12 pm

Lord Black of Brentwood: My Lords, I am greatly indebted to the noble Lord, Lord Wills, for securing this debate. Polymyalgia rheumatica, on which I want to concentrate this afternoon, is an illness about which I have deep personal feelings, for reasons that I shall explain in a moment, and I am enormously grateful for the opportunity to say a few words on it.

Polymyalgia rheumatica is a dreadful condition which, I believe, has for far too long been overlooked. In answer to a Question that I tabled at the end of last year, the Minister-and I was very grateful to him for his reply-said that there were not even any central records about how many people were afflicted by this illness. He helpfully cited a review from the British Medical Journal of April 2008, which reported that the incidence of polymyalgia rheumatica in people over the age of 50 was about 100 per 100,000.

This is not therefore a very common illness. It impacts mainly on older women over the age of 70, and often on people who are already ill with other conditions such as osteoporosis, which is itself a dreadful scourge. Perhaps that is why we pay so little attention to it. However, we should, because my belief is that this condition is really a potential killer-not because the symptoms overwhelm the patient but because the treatment can. In itself, this illness is self-limiting and will disappear within two to three years, but my fear is that far too many people never get to that point because the steroids that are at the moment the only realistic treatment for this illness so weaken them over that time period.

If your Lordships will indulge me, I should like to tell the Committee about my personal experience. My mother had suffered from osteoporosis for many years. It was, as is so often the case, diagnosed too late because of the failure of GPs to recognise the condition. However, that is a matter for another day. In the summer of 2008, she fell ill with the excruciating pain in the joints that is the classic hallmark of polymyalgia rheumatica. A specialist diagnosed the illness and began her on a course of treatment with a corticosteroid called Prednisolone.

Neither he, nor our GP, informed me or any of my mother's closest relatives about what the appalling consequences of prolonged treatment with this dreadful drug would be. We were told that this condition was easily manageable with these tablets. But we soon found out at first hand that it was not.

Within a month of being started on a high dose of this steroid, this normally slim lady put on a great deal of weight, placing burdens on her heart. Then, even more devastatingly, infections began in the chest and in the bladder. Each month a new one developed, with prolonged spells of hospitalisation, as her immune

30 Mar 2011 : Column GC208

system was shredded by these steroids. Then injuries began in her legs as her skin became thinner and thinner. During one admission in Basildon hospital, she sustained an injury to her leg when a wheelchair was banged into her. The wound never healed.

Worse was to come. In what turned out to be her last Christmas, her personality began to change, as she became anxious, depressed, confused and irritable. It was not until I begged her doctors to reduce the high levels of Prednisolone that she regained her warm and ebullient personality. At the same time, these drugs took a blow torch to her osteoporosis, which rapidly worsened, causing her excruciating pain in her shoulders and legs.

Not long after, thanks no doubt to the weight she had gained and the trauma caused to her body, she suffered a heart attack. A few weeks after that she fell ill with her fourth chest infection in eight months and died in February 2009. Although it is not a killer disease, it was, I believe, polymyalgia which killed her. Not the illness but the only available treatment.

Since then, I have looked in much more depth as a lay person-I readily admit that I have no medical expertise-at the impact of Prednisolone, used over a prolonged period, on the human body. An article in the Nursing Times on 25 April 2006 set it out rather well. It mentioned that Cushing's syndrome, water retention, weight gain, acute risk of infection as a result of the attack on the immune system, gastric disturbance and peptic ulceration, skin changes and bruising, increased risk of osteoporosis-or a worsening in those that already have it-changes in mental state, inability to sleep, worsening arthritis and glaucoma and, of course, giant cell arteritis, are all side effects of the prolonged treatment that is necessary for polymyalgia. I know from first hand how devastating they can be. How many people have died? How many more will have to do so before we recognise this often overlooked condition and treat it as such?

I am not so naive as to believe that there are any easy answers to this question, but there are things which can and should be done. First, we should recognise that this is a life-threatening disease because of the way that it is currently treated. As an illness it can mean prolonged steroid use for up to three years, and that can be a death sentence in older people.

Secondly, I believe that GPs should be better trained to explain to polymyalgia sufferers and their relatives what the consequences of steroid use will be. There should be proper advice on how to mitigate those effects, including diet changes, the use of prophylactic antibiotics, or a pneumococcal vaccine to help prevent lung infections, none of which was offered to my own mother.

Thirdly, corticosteroids such as Prednisolone should come with much more serious warnings than they do about their harmful consequences. Doctors should be obliged to keep the doses of it as low as possible, seeing their patients every week if necessary to try to monitor their impact and to cut them down when they can. Finally, there should be more research into what causes this illness and how it can be prevented. As an illness of those in their twilight years, in those who are already ill, it is often overlooked. But if we could get

30 Mar 2011 : Column GC209

to the root causes of it, and help to try to prevent it, many thousands of lives would be lived more fully than they currently are.

I have been able to relate today the experience of just one family. There are many more out there for whom it is already too late. But let our gift for the next generation be to redouble our efforts to deal far more effectively and humanely than we ever have before with this horrible illness.

6.20 pm

Lord Alderdice: My Lords, as the noble Lord, Lord Black of Brentwood, said, we are all grateful to the noble Lord, Lord Wills, for attaining this debate. The two noble Lords who have preceded me in the debate have pointed out a number of the problems of dealing with these disorders. The terms of the debate are polymyalgia rheumatica and giant cell arteritis. Although they are related disorders, there are important differences as well as overlapping and connections.

In the case of the condition that the noble Lord, Lord Wills, was particularly exercised about, he was talking really about temporal arteritis, as giant cell arteritis can happen in other places, the aorta, and so on. The question of early, rapid and irreversible blindness is really a function of temporal arteritis. Indeed, many people who have temporal arteritis also have polymyalgia rheumatica and probably about 15 per cent of those with polymyalgia rheumatica have temporal arteritis. They are overlapping and we do not really know why they come about but the management is very different.

As the noble Lord, Lord Black of Brentwood, pointed out, there are significant problems with the treatment with Prednisolone, although there is not much in the way of an alternative. Very early diagnosis is difficult because there are other disorders that are similar in their symptoms. Indeed, a noble colleague remarked earlier that, listening to the list of symptoms, she began to become concerned about herself. There are many different disorders that can cause some of the symptoms of polymyalgia rheumatica-some even in my professional background in mental disorders. Rushing into treatment may not actually be the best thing and there is not a pathognomonic diagnostic tool. For temporal arteritis it is quite different because, as the noble Lord, Lord Wills, said, it is crucial to get on with the treatment very quickly. If you do not, the blindness supervenes. You might get a good diagnosis but it is all too late. There is a clear diagnostic tool, temporal artery biopsy. It can be done by a physician, surgeon, or whomever, and very quickly the dose of Prednisolone can be instituted. If at all possible, it is better if the biopsy can be done first, and then, even before the biopsy has been looked at carefully, you can start with the treatment. If you start with the treatment immediately it tends the make the diagnostic problems of a biopsy a little more difficult, but the key thing is stopping the blindness.

One of the problems with the difference, overlapping and so on, is how one gets the message across to medical practitioners on how to deal with things, which was the burden of what the noble Lord, Lord Wills, was bringing to your Lordships' and the Minister's

30 Mar 2011 : Column GC210

attention. It is very important to focus on the fact that we are talking about temporal arteritis leading to the blindness. Even the very term itself tends to focus the general practitioner's mind on when he should become alerted to the range of symptoms, but focusing particularly on those things that might indicate temporal arteritis. In that case, he or she should quickly get a biopsy and start the treatment even before the results come back from the pathologist.

If you mix giant cell arteritis in general with polymyalgia rheumatica, you have a range of difficulties, disorders and treatment approaches that are complicated and cannot be diagnosed very clearly. There are lots of different tests that you might do, by which time the person is blind. That is exactly the kind of problem that the noble Lord has pointed out.

The noble Lord suggested raising the profile and having the Minister make a speech-I wholly agree with his sentiments about the standing of the noble Earl and the beneficent way in which he deals with these matters. He made a number of valuable suggestions about reference to NICE, getting matters across, a "Dear colleague" letter from the CMO, and so on. But, if the main concern is early, rapid treatment to prevent blindness, we need to focus specifically on temporal arteritis and move on quickly to treatment. If the burden of our concern is polymyalgia rheumatica, we ought to go a little more slowly and conservatively because there are other possible diagnoses. There are not obvious diagnostic tools and moving too quickly to treatment and not holding back can be, as the noble Lord, Lord Black of Brentwood, pointed out, more of a tragedy than the disorder itself.

6.25 pm

Baroness Bakewell: My Lords, there was a tale told when I was first an advertising copywriter of a beggar sitting beside the road with an empty hat at his feet and a placard that read, "I am blind. Please help". An advertising man took the placard and amended the message to, "It is spring. I am blind. Please help". According to legend, the hat was soon filling with coins. It is spring: please help.

I support my noble friend's idea that there needs to be much greater awareness of giant cell arteritis in the community and among GPs. I do not have medical expertise, alas, and I am grateful not to have had the tragic experience of the noble Lord, Lord Black, with the death of his mother.

The added words were meant to bring home to all those who passed by just how terrible the affliction of blindness is. It is not only the buds on trees and the dancing daffodils that the blind cannot see-they cannot see the faces of those they love; they cannot easily move around the world, crossing roads, using the tube; in their own homes they cannot trace the multitude of things mislaid daily in life, they cannot read, watch television, cook or look out for domestic hazards such as gas taps left on and rugs awry. The sum total of all such difficulties is a life vastly curtailed from a life lived with full sight. That, as we have heard from the noble Lord, Lord Wills, is the predicated outcome for some 3,000 patients a year who suffer giant cell arteritis. The examples I have given were among the main

30 Mar 2011 : Column GC211

problems that arise for older women. I understand that women over 50 are particularly vulnerable to giant cell arteritis.

In supporting my noble friend in urging the Government to take action, I want to describe a confluence of social circumstances that converge on the group most at risk from the threat of blindness. First, they are for the most part older patients. It is generally recognised that people of an older generation are often more tentative in their relationship with their GPs than younger, more assertive, generations. Older people turn up and describe their symptoms and, all too often, get from their doctors a response that amounts to little more than, "Well, what can you expect at your age?" It is the way in which society colludes to groom older people to expect their lives to be winding down. We do it far too often, far too early, and often with far too little medical authority. It is an expensive and depressing form of ageism, somehow implying to older patients that their aches and pains are of less significance than they were when they were younger.

I am careful to say "implying" because no doctor would articulate such a thought outright, but in the mood and way older patients are often treated, the "What can you expect at your age?" mentality can discourage them from pressing more insistently for the medical treatment they need and which would avoid their symptoms developing further. Nowhere is this more evidently the case than with giant cell arteritis.

The second circumstance that increases the chances that giant cell arteritis could be overlooked is that the symptoms are so humdrum: headaches, sudden onset headaches, headaches over the temples; loss of appetite, weight loss, depression, tiredness. All these symptoms crop up at every age but are more easily set aside when they happen to older people. What is more, our culture has come to expect the old to be complaining. We made a comedy television hero of Victor Meldrew, and we watch and laugh along with everyone at successive television series based on the notion of "grumpy old". The old are seen in these images as intrinsically irritable and complaining. It may just be television comedy, lightly meant and not to be taken too seriously, but such regular and amusing stereotypes colour our assumptions, sometimes to a dangerous degree. A patient presenting with a headache might just be one of them, but their complaint might be serious enough to need instant treatment and its neglect could, as we have heard, lead to total blindness that was totally avoidable.

A third consideration, related to all these, is that there is no time to be lost. With immediate diagnosis and treatment with high-dose steroids, and without waiting for a specialist report, the risk of blindness can be averted. Yet this is not how GPs go about their business; it is common practice to listen, weigh up symptoms and then recommend a first-stage range of treatments. In the case of giant cell arteritis, this will be damaging delay. When someone, especially an older person, goes blind, it is not only the individual who is afflicted. The social consequences in the life and care of such a person have a major impact, too, on the lives of their family, on those who have to cope with them, in where and how they live and in planning the social support for their rest of their lives.



30 Mar 2011 : Column GC212

It is becoming a truism of our ageing society that one of the most desirable patterns of living longer should be staying healthy for longer-desirable not only individually across a generation but in major financial savings to the state. Already, the system of social care for the old is woefully inadequate, leaving people isolated and neglected because the service is not fit for purpose. My noble friend Lord Wills has already detailed the further financial cost of 3,000 new patients each year suffering from acute blindness. I can suggest only the personal reality of those costs: already-stretched care workers with lists of visits to be made daily rushing in and out of people's homes, dumping unappetising food on their clients and offering them cursory hygiene and little in the way of friendship. Sometimes an older person may have several different carers coming and going, as the job turnover is high and its wages low. I do not describe such social care to condemn the carers; the system forces such behaviour upon them.

Imagine how much more distressing and isolating it would be to receive such care if you were blind. That level of human misery is avoidable. If the Government take steps now strenuously to urge awareness of giant cell arteritis upon the medical profession, the blight can be averted. We know, as my noble friend has indicated, that raised awareness of symptoms among GPs already reduces the risk of damage caused by strokes. The gap between where we are now and the prospect of saving 3,000 people a year from going blind is a little one. It can be bridged, simply and soon. To do it is within our reach. It is spring.

6.32 pm

Baroness Brinton: My Lords, I thank the noble Lord, Lord Wills, for calling this debate on a rare pair of diseases that have serious impacts on patients' lives. I also have a sense of déjà vu, having spoken in the previous debate about holistic services for those with life-limiting illnesses, based on my experience of physiotherapy services for rheumatoid arthritis. RA is much more common than polymyalgia rheumatica and giant cell arteritis, and I suspect that diagnosis of it is relatively easy. Today, I shall focus on PMR.

I say "relatively" because for most of the time the diagnosis of this family of auto-immune diseases is often a bit hit and miss, with much of it based on a subjective view of the GP on the level of stiffness of joints and pain that a patient is experiencing. That is particularly true for those who have seronegative rheumatology disease, which can be just as disabling for those with seropositive results. I know of sufferers who say that it took them a long time to get their GP to take their pain and stiffness seriously enough even to get a referral to a consultant. After all, is stiffness not just a bit inconvenient? For those without this type of arthritis it is impossible to convey the dread of waking up in the morning, knowing that that first move to get out of bed is like moving after having a night's sleep following a 20-mile hike the previous day. Yet that happens every morning and every joint screams at you as you start to move.

As your creaky joints start to loosen up, you are working out how on earth to get down those stairs. Your knees and ankles will not co-operate for at least the next hour, and your shoulders are so stiff that you

30 Mar 2011 : Column GC213

cannot lift them to hold the banister. Yet you need to get downstairs because, while you cannot take your medication until you have eaten, you are desperate for the anti-inflammatory steroids and painkiller drugs. For patients trying to get a diagnosis, that must be absolutely terrifying. They may not have learnt the language of pain description, let alone have got access to pain clinics and effective pain control. The noble Lord, Lord Black of Brentwood, made the essential point about over-reliance on steroids. The Prednisolone bounce may give relief-I speak from personal experience-but its long-term use is worryingly dangerous. For PMR, the use of disease-modifying drugs such as Methotrexate should now be investigated as routine, as they are for RA, thus reducing the need for long reliance on steroids.

For PMR sufferers, there is also the further problem of disabling headaches, which are famously difficult to diagnose as they can be symptoms of a large range of problems, some serious and others not. Thirty years ago, many GPs would have put this down to stress. Perhaps some still do today.

As I mentioned in the previous debate, the NICE guidelines are very impressive, but there is an issue about GPs being aware of the detail and therefore ensuring that patients get early access to specialist physiotherapy, occupational therapy and so forth. I hope that the Minister will forgive me for briefly repeating the point that I made in the earlier debate. This early specialist intervention is absolutely vital. In my own case, I see a physiotherapist, a hand specialist and an orthotist, all of whom are there to ensure that I keep as much mobility and flexibility as possible.

Patients who do not get access to this specialist physio and OT support tend to lose mobility earlier and are more likely to give up working sooner than their colleagues who are getting that help. A substantial percentage of rheumatology patients are no longer able to work within five years of diagnosis. This is vital for the independence of patients but, frankly, it is also vital to the country because of the cost of supporting those patients. The same is true for PMR but, without the NICE guidelines, it is almost impossible.

Rare diseases need champions and I ask the Minister to ensure that PMR patients get access to the NICE guidelines or, while that is being sought, that they are deemed to be covered by the RA guidelines, many of which seem to cover the treatment needed for PMR. Reading through the drug regime, the physical needs and so forth, there is much overlap. I ask the Committee to forgive this non-clinician patient view of the world. I am sure that it is too simplistic but there are things that can be learnt from it. Surely access to the appropriate holistic services is as essential for PMR patients as for RA patients.

I want to end on a positive note. I asked the Minister privately some time ago about the status of these NICE guidelines under the proposed new healthcare changes emerging from the White Paper and the Bill. I was much encouraged with his response that the guidelines would take a stronger role for clinicians in their treatment and support for patients. What is important is that NICE has the capability to produce guidelines for the rarer diseases in the rheumatology sector that rely on

30 Mar 2011 : Column GC214

early diagnosis and treatment to protect the health of the patient and to prevent deterioration through active physiotherapy.

6.37 pm

Baroness Thornton: My Lords, I congratulate my noble friend Lord Wills on calling this debate. These short debates are ideal for a discussion about something very specific and important such as the disease giant cell arteritis. It is always a challenge, therefore, to find anything new to say when the matter has been thoroughly explored with the eloquence of the experts who are here today. That never stopped anybody in the House of Lords from making a few remarks, but I will be brief.

To put this in the vernacular, the issue is a bit of a no-brainer. Indeed, when I was practising the pronunciation of polymyalgia rheumatica, about which I had no previous knowledge, one of my colleagues piped up that her mother had that, so I ran off a very helpful fact sheet about giant cell arteritis to give her.

As noble Lords have said, the problem with giant cell arteritis is that the symptoms are so commonplace-headaches, tenderness on both sides of the forehead, feeling unwell and so forth. The treatment is also relatively straightforward-urgent treatment with steroids, which will prevent the blindness that can occur and which is irreversible. Clearly, doctors and patients need to be aware of the risks of giant cell arteritis in people and should be on the lookout for symptoms of the disorder. That is the first point, which echoes what other noble Lords have said. If someone is diagnosed with polymyalgia rheumatica, doctors need to warn them that this is a possible consequence.

At this point, my noble friend read a list of requests for the Government, which were echoed by many other noble Lords. In many ways, I cannot better his action list, which, as ever, shows my noble friend's ability to analyse and put forward practical solutions that are also achievable. I hope that the Minister will undertake that his department will seriously consider making blindness from giant cell arteritis a never event and I hope that he will ask NICE to make an appraisal of giant cell arteritis services to produce guidelines.

Perhaps I may add one or two requests of my own. Have the Government estimated the cost of blindness caused by this condition, or does the Minister agree that my noble friend's estimate is in fact the true cost? Linked to that is the issue of research. Something that costs so much and which, I suspect, does not receive as much dedicated research as we would wish creates an imbalance that we ought to address. I should like to know what research is taking place into this condition-the noble Lord, Lord Black, made this point very eloquently-because we need to find new drugs to treat it. It is clear that that needs to happen because of the vulnerability of old people to massive doses of steroids.

As my noble friend Lady Bakewell said, "It is spring. Please help".

6.41 pm

The Parliamentary Under-Secretary of State, Department of Health (Earl Howe): My Lords, I am grateful to the noble Lord, Lord Wills, as I am sure are all noble

30 Mar 2011 : Column GC215

Lords, for raising the need for early diagnosis of polymyalgia rheumatica and giant cell arteritis and for making clear the serious results that can follow should the diagnosis be missed or appropriate treatment delayed.

In addressing his question, perhaps I may start with what may be the most obvious and important issue: namely, what is out there for clinicians in terms of commissioning support and training. As the noble Lord will be aware, there is already excellent guidance available on these related medical conditions, both for healthcare professionals and for patients. The British Society for Rheumatology, with partner organisations, has recently published clinical guidelines for both conditions. The society has an active strategy for disseminating these guidelines widely among healthcare professionals, including GPs. Summary information for GPs is available from Patient UK and from clinical knowledge summaries.

I am advised that the importance of prompt diagnosis of giant cell arteritis is underlined in both the undergraduate medical curriculum and in post-graduate training for GPs and relevant hospital specialists. Both NHS Direct and Patient UK carry information for patients.

This of course underlines that it is not the Government who improve the quality of patient care; it is clinicians. The role of government is to provide a framework that enables clinicians to get on with it, as the noble Lord, Lord Darzi, eloquently articulated in his publication in 2008, High Quality Care for All. Now, with the Health and Social Care Bill, we are breathing life into that framework. I genuinely believe that this will enable clinically led quality improvement of the kind that the noble Lord is seeking for the care of polymyalgia rheumatica and giant cell arteritis as much as it will for other conditions.

Commissioners of healthcare are faced with a complex task. Determining the relative priorities between different clinical conditions requires a difficult and largely technical balance between a number of factors, including the strength of the evidence base, the size of the population affected, the impact of the disease if not properly treated, the disparity between current standards of provision and best practice. The commissioners also need to take into account their duties to promote patient choice, to promote public health and well-being and to tackle inequalities in health outcomes. It is a complex set of interlocking tasks that, again, cannot be managed from the centre.

What we can and should do from the centre is to set broad expectations for the NHS. In the national outcomes framework published in December, my right honourable friend the Secretary of State for Health made clear that we would hold the NHS to account against five broad health outcomes: reducing premature mortality; improving the quality of life of people with long-term conditions; helping people to recover quickly from episodes of illness; improving their overall experience of healthcare services-

6.44 pm

Sitting suspended for a Division in the House.



30 Mar 2011 : Column GC216

6.54 pm

Earl Howe: My Lords, the last of the five health outcomes that I was listing is delivering safe care. Within these five domains we have signalled a number of major improvement areas where evidence suggests the need to improve current performance in the NHS. The national commissioning board will support the NHS in achieving these improvements in various ways, through setting tariffs and other financial incentives, such as commissioning guidance and setting a lower level commissioning outcomes framework against which local commissioners will be held to account. But below this level, it will be for local commissioning consortia to determine exactly which service improvements they need to prioritise to best improve the health outcomes for their populations. They will, of course, be working within health and well-being strategies agreed with local government partners on the basis of a joint strategic needs assessment. They will be accountable to the local HealthWatch and nationally to the commissioning board for the outcomes they achieve.

I turn to the specific suggestions of the noble Lord, Lord Wills. The first of his suggestions was that we should add blindness due to giant cell arteritis to the list of never events which, if they occur in the NHS, would result in contractual penalties. The noble Lord was kind enough to alert me in advance to this suggestion and we have considered it carefully. I am very sympathetic to its underlying intention. However, I am not convinced that it would be feasible. I say that because to qualify as a never event, an incident-in this case, a failure to diagnose giant cell arteritis-must meet a number of criteria. In particular, the incident must be easily defined and identified, and it must be largely preventable if the appropriate guidance is followed. The problem is that the differential diagnosis of giant cell arteritis is not straightforward and would require a detailed case note review to establish whether a clinician was culpable for missing it in a particular instance. I am afraid that the proposed addition falls outside the criteria.

The noble Lord has also suggested that there is a need for NICE guidance. He will be pleased to hear that NICE is indeed considering, through its topic selection process, a potential short clinical guideline on the safe and effective use of steroids in the management of polymyalgia rheumatica and giant cell arteritis. As he will know, NICE has limited capacity for the development of guidance and there are many competing demands on its resources. While it would not be appropriate for me to circumvent the established process for identifying priorities, I can reassure him that the need for guidance in this area is being carefully considered. He also suggested that I refer to the issues of giant cell arteritis in a landmark speech. I fear that he may have somewhat exaggerated the impact that a few words of mine are likely to have on the knowledge and skills of thousands of GPs across the country, but I am always willing to take up suggestions of this kind, where possible, and if I can give honourable mention to this specific condition in a speech I will certainly endeavour to do so.

Finally, the noble Lord suggested that we should use one of the Department of Health's regular channels of communication with the NHS to raise the profile of

30 Mar 2011 : Column GC217

these two conditions-perhaps via the regular bulletin to GPs and practice staff. The department has a variety of means for communicating directly with NHS professionals. I am happy to consider that idea. In general, the modes of communication tend to be used mainly for the most urgent or significant public health messages, and it would not be appropriate for the department to seek to give advice on clinical issues for NICE or the various professional organisations. However, it would be possible in theory to use the GP bulletin to draw attention to professional guidance in this area, such as the excellent clinical guidelines developed by the British Society for Rheumatology and its partners. The department is already discussing with the society whether it would see this as a useful addition to its own means of dissemination.

We need to come back to a fundamental point. A liberated NHS should not wait for permission from Ministers to do anything. It should instead be listening directly to patients and their advocates-here, I include the noble Lord among the champions of these particular groups of patients. That is what the NHS will increasingly be doing.

The noble Lord asked me-he repeated the figure several times-whether the department accepted the estimate of 3,000 people a year going blind as a result of failure to diagnose giant cell arteritis. I made informal inquiries before the debate and, although he is absolutely right in all that he said about the devastating effects of this condition, I have been unable to verify the figure of 3,000 people, and experts whom we have consulted think that the true figure is quite a bit lower than that. I would be interested in any further information that the noble Lord has on that issue, and indeed on his statements around the failure by doctors to diagnose giant cell arteritis.

My advice is that the vast majority of GPs are already aware of the serious consequences of failure to diagnose giant cell arteritis, and I have already referred to the aspects of their training relating to that. It is a relatively rare condition; the average GP might see one case every two years. Picking up the occasional case of giant cell arteritis among many less serious conditions with superficially similar symptoms is therefore not straightforward. However, I believe that the great majority of GPs are sensitive to the need to pick up this serious condition.

The noble Baroness, Lady Thornton, asked me about research. As she well knows, there is a transparent process for determining research priorities, and I am sure that the professional organisations for rheumatological conditions will be familiar with the steps that they need to take, either in relation to research funding through the MRC or indeed, as regards clinical research, through the Department of Health.

My noble friend Lord Black referred in powerful terms to the adverse effect of steroids as treatment. He may like to know, if he does not already, that the standard guidance to GPs makes it clear that any dose of steroids should be progressively reduced over a fairly short period, so it is alarming to hear the experience that he recounted. He also said that GPs should warn patients of the adverse effect of drugs. I agree absolutely

30 Mar 2011 : Column GC218

that that is a fundamental responsibility for all doctors, especially if drugs have potentially severe side effects. My noble friend Lord Alderdice pointed out the need to keep a focus on temporal arteritis, which should not be muddled up with polymyalgia rheumatica. That is clearly an issue for the professions, although he makes a valuable point. I undertake to draw his suggestions to the attention of the Royal College of General Practitioners.

My noble friend Lady Brinton suggested applying NICE rheumatoid arthritis guidelines to polymyalgia rheumatica. As many of the issues are the same I would be reluctant to tell NICE how to do its job. It is perhaps better to await the outcome of the topic selection process, which is already looking at PMR. The noble Baroness, Lady Bakewell, who is not in her place, spoke powerfully about ageism. I agree that any form of ageism is unacceptable. It is vital that education and training for GPs should address this issue and emphasise the specific signs for these diseases that are particularly prevalent in older people.

My time is up but I shall address the final question put to me by the noble Lord, Lord Wills, who asked whether I would agree to meet him to discuss these issues further. I would, of course, be happy to do so.

Motorways

Question for Short Debate

7.05 pm

Asked By Lord Trefgarne

Lord Trefgarne: My Lords, the motorways are the vital commercial arteries of our nation. They are for the carriage of goods, for the carriage of people and, sadly, occasionally, for the carriage of villains but above all for the purposes of commerce. They have replaced in that role the railways of previous centuries. Indeed, we now have some 5,000 kilometres of motorways altogether, and they are a vital part of our national transport infrastructure.

Until the early 1990s, they were patrolled largely by the county constabularies. Each constabulary patrolled its own proportion of the motorway which went through its particular county. That, naturally, was not a very efficient way to do it. As the networks grew and vehicle numbers increased, county constabularies gradually withdrew from regular patrolling. Today, you can drive from Leeds to London without seeing a single police car. That is not to say that there are no police available, but nowadays police activity is largely in response; that is, police units respond to calls, often from long distances and often not even from places on the motorway. I do not wish to denigrate or decry the efforts of the police who do their best in these circumstances, but response is obviously longer, inevitably so.

What is the task? It is to respond to accidents, obviously, to police motorway activity generally-for example, dealing with dangerous or unsafe driving or

30 Mar 2011 : Column GC219

vehicles-and, particularly nowadays, to detect and intercept vehicles wanted by the police for one reason or another. The police are assisted in that task by the so-called automatic number observing system, which I have seen in operation. Virtually every vehicle entering the motorway system these days is observed by a camera of some kind or another. The registration number comes up on a computer and those that are wanted for one reason or another can often be intercepted, even for the most minor transgressions-for example, an expired MOT or a lack of proper insurance cover.

Not all motorways lack regular patrols. There are two units, one in the north-west around Manchester and another around Birmingham, where five or six local constabularies have come together to pool their resources and provide regular patrolling or a dedicated response. Indeed, I was lucky enough to visit the Central Motorway Police Group last year and spend a valuable day watching and hearing about its work. I am particularly delighted that the noble Lord, Lord Dear, will speak in a moment, because he, I believe, founded that group when he was chief constable in the West Midlands. I look forward to hearing what he has to say. The Central Motorway Police Group and its colleagues in the north-west represent, I suggest, a valuable template which I hope commends itself to Ministers. I recognise that there is little prospect of additional funds for these purposes, or indeed any other, at present but the CMPG model represents a reordering of existing resources and not, I suggest, new money.

Perhaps there is another way forward. Would it not be possible to extend the role of the British Transport Police to include not only the railways, which it polices very effectively at present, but perhaps the motorways and some other major road routes as well? For now, I put it to my noble friend the Minister that the expansion of the British Transport Police's role as I have suggested might be considered. As before, I see this as a reordering of existing resources, not new ones.

Before I end, I must refer to the traffic officers of the Highways Agency. I do not for one moment wish to decry or denigrate their efforts. There are some 800 of them, and presumably only about 200 or so are ever on duty at any one time, but their powers are very limited, although I recognise their usefulness in dealing with minor incidents and perhaps assisting the police in major ones. Yet if the highways officers are to be of real value, they really need more power. Most of them are, I gather, retired police officers, so perhaps they could be re-enlisted as special constables or community support officers, which are quite fashionable these days. I fear that, for now, they are something of a wasted resource.

Our motorways are a vital part of our national transport infrastructure. They need to be better patrolled and supervised, and I invite my noble friend to bring forward proposals for that purpose.

7.11 pm

Lord Dear: My Lords, I start by congratulating the noble Lord, Lord Trefgarne, on securing this debate today. It is a subject that has caused me some concern and indeed distress for some years. It was 30 years or

30 Mar 2011 : Column GC220

so ago that the Home Office and the Department for Transport put forward a formula that sought to indicate the numbers of police patrol vehicles that should be on motorways or A-class trunk roads. It varied according to motorway or A-class trunk road and varied according to day or night. Those numbers were never achieved; they were seen to be extravagant, even 30 years ago. But although they were never achieved, the fact was that in those days, and right up to 15 years or so ago, chief constables deployed something between 7 per cent and 10 per cent of their total strength on road motor patrol duty, dedicated to the patrol of A-class roads and motorways and dealing with the situations that occurred on them.

When one looked at the work rate of those officers, a lot of it was not to do with traffic incidents at all. It was to do with major crime being committed on the motorways or criminals using the motorway network and the A-class trunk roads to travel about in pursuit of crime, carrying stolen property, and so on. The numbers of arrests made by traffic officers in that theatre of police work was considerable, impressive and undoubtedly a potential deterrent to criminals, who would have to think several times before venturing out onto a motorway or main road network.

Things are very different now. There is an old adage-tired and much used-that you can never find a police officer when you want one. It could never be truer than if one drives around the main road networks of this country. I have to say-and it saddens me to say so-that there has been a complete retreat from the targeted policing of main roads and motorways in this country. As the noble Lord, Lord Trefgarne, has already alluded, in 1989 I set up the Central Motorway Patrol Group, which is a consortium of police forces that is still working and which patrols that big industrial complex in the centre of the country, drawing officers from the West Midlands police, which I commanded at that time, Warwickshire, Staffordshire and West Mercia. I think that Warwickshire has dropped out of it now, but certainly the group still patrols vigorously, accurately and with considerable success. It was copied in the north-west, as has already been said-in Manchester-and for a time was also copied on the M25 ring, although I believe that has now dropped away.

Elsewhere the patchwork is very poor indeed. One could say that the cupboard was virtually bare. The police patrolling of main roads, including A-class roads, is sparse to the point of invisibility. I drive around 20,000 miles a year, frequently on a 400-mile or so round trip from the Midlands to North Yorkshire and beyond, and I can say with absolute confidence that on most of those journeys I never see a police patrol vehicle, yet those motorways have some of the heaviest traffic in the country. There is not even a token police vehicle. In my own rural county in the centre of the country, I drive around on all the main roads and motorways in that small area, and I cannot remember the last time that I saw a dedicated police road patrol vehicle.

As the noble Lord has already said, those who work for the Highways Agency are about. One frequently sees them in operations on motorways clearing up after an accident or picking up debris. Occasionally, it

30 Mar 2011 : Column GC221

is true that the police are there dealing with an accident, coning off and taking statements and so forth at the scene of the incident. But those vehicles that are turning up frequently, although they are equipped to deal with the aftermath of accidents, are being deployed the majority of the time as response cars for other incidents within the totality of policing. They will only be deployed onto the main road to deal with the incident as and when it happens. They are then redeployed back to the plethora of 999 calls and other calls on police time.

The fact is that motorway and A-class road patrolling has been virtually abandoned by the police. It grieves me to say so, but it also concerns not only me-a small part of the equation-it concerns the motoring organisations as well. With one voice and frequently, they have drawn attention to it.

One hears a number of views expressed in defence of what is happening. One has already been mentioned: that cameras and automatic number plate recognition or ANPR can produce a result. To counter that, I would say that no chief officer of police could get away with a statement that said that he had totally left the policing of the city centre to cameras and that there would be no police presence in uniform at all. He could not sustain that argument. Yet the argument that we can apparently do with just cameras and ANPR is apparently allowed to be applied to main roads. That is not acceptable.

Another argument that is deployed is that road deaths are going down. So they are, but they still stand at something like 3,000 a year. Much of that reduction is down to better provision of engineering on the roads-the increased safety design of motor vehicles and the speed and expertise of casualty evacuation-CASEVAC-from the scene to the hospital. All of that will contribute to a smaller number of deaths on the roads. It is true that motorways are numerically the safest roads on which to travel in terms of numbers of accidents, although one has to say that when an accident occurs it is normally catastrophic because of the speeds that are involved.

I have already mentioned to your Lordships that crime takes place on motorways and the products of crime are travelled through motorways. Many criminals are thoughtful people. They use vehicles and travel immense distances across borders, taking part in criminal activities. They know full well that the cameras are there. Any thoughtful criminal will not use a car that they guess will be on the register, flagged up with a warning note. They will almost certainly either hire a vehicle or get hold of a vehicle that they know is, in the parlance, clean.

What about plain cars? I introduced them in the West Midlands with on-board cameras-the first major experiment in the country. The scheme was copied by various forces in the country shortly afterwards. I know the tell-tale signs to look for on plain cars, which are not particularly apparent, but I look for them and do not see plain cars very often either.

The problem grew from the target culture introduced by the Home Office in 1999, 2000 or thereabouts. A whole plethora of performance indicators were visited

30 Mar 2011 : Column GC222

on chief officers of police with which they had to comply. It is interesting to note that not one single performance indicator required attention to road transport or road safety matters. There was nothing to do with roads. Chief constables predictably moved away and concentrated on other things. Ministers will say, quite rightly, that deployment of reasonable resources is solely a matter for the chief officer, and so it is. I do not say that Ministers could have done more in this instance at all. The sad fact is that chief officers of police have taken their eyes off main road patrolling. They will pray in aid increased demand of workload elsewhere and shortened budgets, but I do not think that that is good enough.

It is not good enough when, as has already been alluded to, one considers the huge value of the loads being transported across the motorway network on an hourly and yearly basis; the huge numbers of people who travel on the motorways; and the potential for very serious incidents and accidents. All Ministers can do is to encourage-I appreciate that they cannot go any further than encouraging-chief officers, by whatever means necessary and possible, to collaborate together. As has already been mentioned, there is a call for regional motorway patrol groups across the country, and that may well be worth looking at. One way or another, they must bring to the notice of the public, and thereby to chief officers of police, the fact that motorways at the moment are not policed. They must encourage the police to do so and to recognise that the present situation is unacceptable.

7.21 pm

Lord Davies of Oldham: My Lords, I am grateful to the noble Lord, Lord Trefgarne, for raising this interesting topic. The Minister will reply in regard to the Government's responsibility for this position but I am not too sure that I want to place the Opposition strongly behind the proposals being put forward. They are good in themselves-and all good proposals ought to be supported-but, although I appreciate that if our motorways and main roads were policed more some aspects of road safety would improve and that it would help in the battle against the mobile criminal, to which the noble Lord, Lord Dear, paid particular attention, I am not too sure that the withdrawal of motorway patrols has led to a very significant weakness in the response of either the police or, ultimately, Ministers, given their responsibility for road safety, or to a deterioration in the situation.

First, we know that motorways are by far our safest routes and, secondly, that Britain's road safety record compares extremely well with other countries, although we can never be complacent. We all recognise that there are factors which may be conducive to causing that situation to deteriorate; and we can all think of ways in which we could improve aspects of road safety, costly though some of them may be. However, I would not make the issue of motorway safety a major priority. I know the impact upon the public when, as indicated by both noble Lords, a catastrophe occurs-an accident often has tremendously bad consequences-but a great deal of catastrophic accidents take place in extremely bad weather, and I am not too sure that patrolling police vehicles give any warning that remotely

30 Mar 2011 : Column GC223

matches that on the gantries, which inform people that there is fog about and that it is necessary to slow down. The motorway warning system, while passive in comparison to the police, is effective and is constructive in ensuring that our system is reasonably safe.

On the issue of crime prevention, I appreciate that the number plate recognition system is extremely helpful to police forces. However, as the noble Lord, Lord Dear, speaking from vast experience, indicated, sophisticated criminals are not going to take out vehicles which are readily recognised. Nevertheless, the very fact that this system exists must act as some deterrent. Certainly, it enables minor crime such as traffic and vehicle ownership offences and so on to be covered, but not the sophisticated groups to which I think the noble Lord, Lord Dear, was referring.

Would regular patrolling greatly improve this position? Where we are able to identify very dangerous roads, it might be of enormous help. Every year, there is some identification of roads that are a nightmare to drive on, such as the famous A635, which I used to drive on regularly on Friday evenings in foul weather. It was an appalling road to be on and I was not at all surprised when it featured, for one year only, as the most dangerous road in Britain. Another road took its place the subsequent year.

We also know that road dangers are partly increased by criminal activity of a sporting kind through motorcyclists going out to break the law at horrendous speeds and taking enormous risks. While I assume that they are not quite the hardened criminals the noble Lord, Lord Dear, was identifying, the activities of these groups' render a road very dangerous when they decide to use it for fast practice. Increased police activity on that phenomenon would be enormously desirable.

Nor do I think that the Highways Agency has a great role to play in this. I was responsible for the legislation that enhanced the role of the Highways Agency staff, but that was designed very much to try to free the motorway after accidents. By clearing the disruption and blockage that had occurred, it enabled the police to carry out their essential task of identifying what had caused the accident and whether it was due to bad driving. Yet the Highways Agency's role was, essentially, to do its level best to ensure that the motorway continued to flow; that is its limited role. One could not conceive of Highways Agency vehicles or staff in a police role unless they were trained very differently and unless the vehicles were entirely different from those which they use at present. So I do not think there is a great deal in that.

Does that mean that I therefore think that the Government can rest on their laurels and be complacent about the present position? Certainly not if they intend to increase the speed limit. There are indications that the Government are thinking of increasing it to 80 miles per hour. I know it will be said that an awful lot of traffic flows beyond 75 miles per hour at present and that the 80 miles per hour limit would only recognise the reality of the existing position. The trouble with that argument is that if 80 miles per hour is the limit, the traffic will travel at 85 or 90 because the tolerance level will be pushed up.



30 Mar 2011 : Column GC224

The Government must recognise that speed is a danger and I hope that the Minister will acknowledge that. High speeds, even on our safest roads, increase the risk of accidents and their severity when they occur. It would not be right to increase speed limits unless the Government were bent upon increasing police resources to monitor them. If it was decided to increase the speed limit, it would be absolutely essential to monitor it properly. We could not continue with the present position.

This debate has occasioned a number of real questions for the Minister to address his mind to. We should take pride in the work of our police officers and all those concerned with road safety. We should also take pride in the fact that the British nation is in some respects better at driving cars than many others. More consideration is shown by British drivers than is often shown elsewhere in the world. I can think of some hazardous parts of the world where I never want to venture again in a motor car-although some of them are a little distant from Europe, of course. There should be recognition of our achievements and our comparatively favourable accident rate, but there is no cause for complacency. I hope that the Minister will reassure us that he is not complacent.

7.31 pm

Earl Attlee: My Lords, the Government have set out a clear vision for a transport system that is an engine for economic growth and future prosperity. A well functioning strategic road network is therefore vital for achieving this vision. As part of this, we recognise the importance of effectively managing and monitoring traffic on the motorways and wider strategic road network in England to help tackle congestion, unreliable journeys and ensure the safety of the travelling public. I am therefore grateful to my noble friend Lord Trefgarne for securing a debate on this important issue and for the contributions of the noble Lords, Lord Dear and Lord Davies of Oldham.

In England, the police and Highways Agency have a key role in the effective management, monitoring and patrolling of the motorway network. It is therefore very much a partnership approach, but with each partner having a distinct role. My noble friend has given us a very good explanation of the current situation; he mentioned the Highways Agency Traffic Officer Service, supported by regional and national traffic control centres, which focuses on detecting and managing incidents. This service ensures that traffic is kept moving safely and efficiently in and around incidents and that drivers are informed of what is happening on the network through real-time traffic information. The police role focuses on their core responsibilities of the prevention, detection and investigation of criminality on the network. When serious incidents occur the expert skills of the police and Traffic Officer Service are brought together to ensure that the human, traffic and legal consequences are managed in the most effective, efficient and safe way.

Given the importance that transport has to the wider economy, it is essential that this strong partnership arrangement continues. Indeed, we have long realised that we cannot build our way out of congestion and

30 Mar 2011 : Column GC225

must maximise the value of the roads we already have. The Traffic Officer Service is integral to this. The cost of delay to the economy as a result of incidents is significant. Just one three-lane closure on a busy motorway, lasting no more than two hours, can cost over £500,000 to the economy. This demonstrates the importance of rapid clear-up of incidents; and demonstrates why the Traffic Officer Service places such an emphasis on responding to incidents within 20 and 40 minutes on heavily trafficked roads. Indeed, the Highways Agency clears over 80 per cent of incidents affecting the live lanes within 30 minutes. The Traffic Officer Service has also had a key role in the introduction and operation of managed motorways, where the hard shoulder is utilised as an additional lane. In order safely to introduce traffic on to the hard shoulder, it is necessary to have traffic officers managing the technology from the regional control centre and patrolling the road itself. Managed motorways are less environmentally damaging than conventional widening projects and cost 40 per cent less, but they could not be introduced without traffic officers in place to operate them.

At the present time, we and the Association of Chief Police Officers believe there is no immediate need to review the division of roles and responsibilities between the Highways Agency and police. The roles are very clear, particularly in respect of enforcement activities and powers, and there is no indication that there is a need to provide traffic officers with additional powers or functions over and above those which they have already.

There is an additional difficulty. If we gave Highways Agency traffic officers enforcement powers, it could compromise their ability to act as the friend of the ordinary motorist. That is quite an important function of the traffic officers. Moreover, this Government would not wish to add any further regulatory burdens which additional powers may bring, unless it was imperative to supporting economic growth.


Next Section Back to Table of Contents Lords Hansard Home Page