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4 Feb 2009 : Column 279WH—continued

Mr. Bradshaw: It is above average: the latest figure is 64 per cent. for Stockport and the latest average figure is 57 per cent. Forgive me. I tried to inquire with officials exactly which PCT area Cheadle constituency straddled and I was told it straddled another one as well; it would simplify matters if it were just Stockport.
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However, Stockport is an above-average performer. The range of performance, from 95 per cent. by one of the best PCTs to down in double figures, still, for some of the worst, shows that where the PCTs grip the scheme, implement it properly and engage with their GPs and providers, the system can work.

The simple answer to the hon. Gentleman’s question is that it is the responsibility of PCTs. I am being urged on by hon. Members, who usually urge Ministers not to interfere so much from the centre in local issues and local implementation. I am happy to take away individual concerns raised by hon. Members, but I am afraid that it is not—I do not think that they are suggesting it—a Minister’s job to micro-manage the implementation of every single PCT’s choose and book system. It is the PCT’s responsibility to do it on behalf of their patients.

Mark Hunter: The Minister is generous in giving way again. I personally sought clarification because, frankly, I suspect that when, as hon. Members, we go back and have our regular meetings with our local PCTs, as most of us do, we will find that the PCT will be astounded by the Minister’s replying that the responsibility for these problems lies largely with them and is not down to systematic failure, as we believe.

Mr. Bradshaw: I talked to the chief executive of the hon. Gentleman’s PCT yesterday and he assured me that he was happy with the system and that it was not a systematic problem, as the hon. Gentleman is implying. It is a problem in some cases of GPs not engaging with it and in other cases of the PCT’s system not working properly. It is also sometimes due to providers not putting information up and not using the system as it should be used, which I am coming on to.

As I was saying, some PCTs do not use the clear provisions in their contracts with providers to ensure that referrals flow freely through the system. PCTs need to work with their GPs and providers to resolve that issue. Some hospitals pay too little attention to how their services are displayed on choose and book and they ignore the instances of patients not being able to book appointments for their services. Strategic health authorities—the regional bodies—are working closely with PCTs and providers to tackle that.

The most important ingredient in all this is local leadership. How choose and book is used in Barnsley and in Leeds is a good example. Those two health communities are separated only by the M1 motorway. The system is no less available in Leeds than in Barnsley. In Barnsley, choose and book utilisation has been in excess of 95 per cent. for several months, but across the motorway in Leeds, utilisation is yet to rise above a percentage rate in the mid-20s. Why? The critical factor is the leadership in Barnsley, where the acute trust has really engaged and got behind choose and book.

I am sure that hon. Members who have spoken in this debate would like me to look into the individual cases that they have mentioned and I will certainly do that, but if they are having problems, as a first port of call they should go to their PCTs. If they have a problem with their PCTs, they may, by all means, come back to me.

The hon. Member for North Norfolk (Norman Lamb), in his comments on the speech made by the hon. Member for Hazel Grove, said that some of his constituents had
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complained—perhaps he was making a national point here—that they could not see particular consultants because they cannot choose to wait to be referred to a consultant owing to the 18-week target. Such practice is totally unacceptable. If a patient wishes to wait longer to see a specific consultant, they are perfectly entitled to do so. The point that I was making after the hon. Gentleman’s earlier intervention was that we must not allow individual consultants or trusts to claim that they are so popular that there is no way in which they can meet the 18-week-maximum target. Hospitals are obliged to accept all referrals to the services listed on choose and book that are clinically appropriate. They cannot turn referrals away even if they are struggling to meet waiting time targets. It is important that we stick to the principle that patients choose the hospital, not the other way round.

Norman Lamb: What the Minister is saying is encouraging, but we are told that, time and again, hospitals where the wait is longer than 18 weeks are being “greyed out”—that is the phrase. The option disappears from the list available on choose and book. That is what is happening. If the Minister says that it is unacceptable, what steps will he take to address it?

Mr. Bradshaw: I shall come on to that in a second, but yes, it is unacceptable. I want to take up a point made by the hon. Member for Hazel Grove about the 5 per cent. tolerance level for the 18-week waiting target. He was not right to say that that includes people who do not turn up. The 5 per cent. tolerance is for people who choose, for whatever reason, to delay their treatment, or for cases in which there is a clinical reason to delay the treatment. They may need to get their blood pressure down, for example. It would not be right to penalise a provider in respect of the 18-week performance target just because people did not turn up. I wanted to disabuse the hon. Gentleman of that impression.

Sometimes the hospital that a patient wants will have no appointment slots available on choose and book at the time they want to book. That should not mean that they have to go elsewhere. If a patient cannot book an appointment, their details should be sent to the hospital of their choice, so that that choice is honoured. There are many places where that problem has been resolved and appointments on the choose and book system are almost always available. Where that is not happening, it is important that we hear about it and that strategic health authorities hear about it and work closely with the primary care trusts and the trusts to resolve the problem everywhere.

The hon. Gentleman asked three specific questions. First, he asked about missed calls. The information that I have is that the performance of the national Appointments Line is carefully monitored and is generally considered good. Where it falls below accepted standards, it incurs financial penalties. Since April 2007, 95 per cent. of calls have been answered within 30 seconds, and the key performance indicator relating to the busy tone has been met 86 per cent. of the time. I think that the hon. Gentleman was referring to patients who chose not to complete their call. That would be registered as a call that was not connected. It is perfectly possible—indeed, it is quite likely—that they called back and their calls were answered. However, we regularly review the
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performance of the Appointments Line against the call standards and I would be happy to write to him in more detail about that if he would like me to do so.

Secondly, the hon. Gentleman referred to the 18-week black hole, which I have just dealt with. Patients should be able to choose to wait longer than 18 weeks if they want to do so, but we must not let hospitals off the hook about bringing down waiting times, which all patients appreciate. Thirdly, the hon. Gentleman wanted me to ensure that all appointments are on the screen. We are targeting the trusts that have a high rate of unavailable slots appearing on the screen. Many hospitals have tackled the problem effectively. We want to ensure that they all do.

Andrew Stunell: I want to come back to the Appointments Line question—it seems to be an orphan. The figures that I cited were drawn directly from a parliamentary reply that the Minister gave my hon. Friend the Member for North Norfolk (Norman Lamb) in January. That showed clearly that a large number of people could not get through, a large number of people were “Vivaldi-ed” and simply gave up after 30 seconds or more of the call. I advise the Minister to read the small print of his answer. That gives us a total of 330,000 calls in a year that are not being responded to. Whether people give up because they cannot stand the music any more or because the line is engaged, they still give up.

Mr. Bradshaw: Yes, but the hon. Gentleman is ignoring the fact that those people may have rung back on another occasion and got their appointments. If it will be helpful, I will write to him to give him the clarification that he seeks.

To begin with, choose and book provided a choice of only four or five providers. As I am sure hon. Members will be aware, however, last April, after a major upgrade, we gave patients the ability to choose at referral whichever service would meet their needs. The new system also made it easier for GPs and their patients to navigate through the options available. It is interesting to note that following a peak between April and July last year, the Department has been receiving significantly fewer letters from the public making complaints about choose and book.

A decade ago, people could wait up to two years for a hospital appointment, but thanks to the investment and reform and the introduction of systems such as choose and book, that is no longer the case. Now, the average wait from GP referral to treatment is just eight weeks and no one need wait more than 18 weeks unless they choose to do so. In June this year, further enhancements will be made to the choose and book system that will help hospitals to give their services standardised and accurate names. That will give GPs an experience much more like using Google and information that is far more accurate, enabling them to help their patients in the best way possible.

Hon. Members referred to the recent BMA report. Although that report makes constructive suggestions on how the system can be improved, it clearly shows that the system can work when local engagement, particularly with clinicians, is effective. Its conclusion—section 4—states that the problems encountered were

The hon. Member for Boston and Skegness (Mark Simmonds) referred to the recent Lewisham report, which was published, I think, today. Although we are still looking into that, because it landed on my desk only yesterday, we were rather surprised by the findings at Lewisham that seemed to suggest that choose and book increased the rate of did-not-attends. All the other evidence suggests that choose and book significantly reduces did-not-attends. It is logical that if a patient is actively involved in decisions about their care, their attendance is likely to improve.

We understand that further research is being undertaken in Lewisham on those findings to find an explanation for them. Three previous pieces of research—at Ashford and St. Peter’s Hospitals NHS Trust, at Kettering general hospital and at Doncaster and Bassetlaw hospitals—found a reduction in do-not-attend rates of 32, 33 and 60 per cent. respectively, so there seems to be a conflict with the findings in Lewisham. I point out that Lewisham is an even poorer performer than Norfolk on choose and book. It may be that there is a more general problem, in that Lewisham has not embraced the system, rather than a particular problem with the system itself.

I have spoken about the importance of choice—a concept that most of us believe in and support. The issue that we are debating today is about GPs, primary care trusts and NHS and independent sector hospitals making a choice—making a choice to work with, understand and use choose and book properly, or to ignore it and wonder why it does not work. For their patients’ sake, and with the help of hon. Members, I hope that they choose the former.

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Thalassaemia Patients

3.58 pm

Mr. David Burrowes (Enfield, Southgate) (Con): It is a pleasure to have secured the debate and to speak under your chairmanship, Mrs. Dean. I understand that this is the first time that a debate has taken place in the House on the important issue of the care of thalassaemia patients. Thalassaemia is the name of a group of serious genetic blood disorders that inhibit the normal production of haemoglobin—the part of red blood cells that supplies oxygen to the body.

In one sense, my interest in this issue is local, as the UK Thalassaemia Society is based in my constituency, in Southgate, but my interest goes wider than that, given that there are about 1,000 patients with thalassaemia in the UK requiring regular transfusion treatment for their condition and that more than 200,000 people in the UK carry the beta thalassaemia gene. The overwhelming majority of thalassaemia patients come from ethnic minority communities, particular those of Mediterranean and south Asian origin, and many of them already suffer significant health disadvantages. There are several patients in my constituency.

Thalassaemia remains a little-known condition, which is why I particularly welcome the opportunity to raise the issue in the House today. There are wide variations in treatment and care across primary care and hospital trusts, particularly in areas with low numbers of patients. I have secured the debate in order to highlight the variations in care and the health inequalities to which they contribute and to ask the Minister to consider what can be done to improve the lives of those with thalassaemia in the UK.

People with severe forms of thalassaemia, of which there are about 1,000, do not produce enough healthy, mature red blood cells, and if left untreated, the patient would be expected to die in the first 10 years of life. Thankfully, all pregnant women are now screened for the carrier state through the national screening programme. That is welcome because it makes the identification of patients and earlier medical intervention possible. Happily, the past few decades have seen welcome medical advances that mean that patients with thalassaemia can live long and productive lives if they receive the treatment and care they require.

Medical treatment takes the form of blood transfusions, which the patient typically receives every three to four weeks. One of the problems that thalassaemia patients face is a lack of flexibility from the NHS on receiving those life-saving blood transfusions. Patient choice is lauded loudly by the Government in their vision of the NHS, but the reality for patients with thalassaemia is that they have little or no choice of where or when they receive blood transfusions. That unnecessarily affects their education and employment prospects as they are forced to take frequent and often unpredictable leaves of absence from work or school to receive treatment.

Another issue in the treatment of thalassaemia patients, in which we see a wide postcode lottery of provision, is iron chelation therapy. As blood contains large amounts of iron that cannot be excreted from the body naturally, treatment is required to remove the excess iron that builds up as a result of regular blood transfusions. The process of removing excess iron is called iron chelation,
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and without it, iron deposits would eventually compromise the vital organs and lead to death, usually from cardiac complications.

The standard chelation therapy is for desferoxamine—Desferal—to be given as a subcutaneous infusion via a needle placed, often painfully, under the skin, usually on the abdomen. The treatment lasts for approximately 12 hours and is administered five to seven times a week. As is obvious from that description, the treatment can cause significant distress and impacts on aspects of daily life such as sleeping and the ability to socialise. I have spoken to several patients with thalassaemia within my constituency about the practical impact of that infusion. The drug is also a strong irritant and often causes pain and swelling at the injection sites. The parents of small children with thalassaemia have to administer those injections to their children, which as one can understand is very distressing to both parent and child. Although the treatment is life-saving, because of its painful and time-consuming nature, the rate of non-adherence to treatment is high. In fact, non-adherence to the treatment is the main cause of death among thalassaemic patients in the UK today.

Fortunately, there is hope of improvement in the administering of the treatment. Recent years have seen the introduction of oral chelating drugs that can transform a patient’s quality of life—the difference between taking the drug as a drink or tablets and having a needle under the skin for 12 hours out of every 24 need hardly be emphasised. The UK Thalassaemia Society wants those oral iron chelating drugs, when clinically indicated, to be available to all patients. Sadly, that is not the case due to the wider discrepancy of provision across the NHS. Therefore, many children and adults with thalassaemia must undergo hours of needless suffering every day.

The process of applying for oral iron chelating drugs in England is often through exceptional case procedures within individual primary care trusts. Those procedures are often time consuming and lead to unnecessary suffering for patients, many of whom are small children. The stress and trauma to parents and carers is immense, and the process requires additional time from doctors who often have other taxing requirements to make those detailed funding applications.

I appreciate that the Minister will say that she cannot direct that application process and that it is for individual PCTs to deal with them, but I hope that she will join me in encouraging PCTs in areas where the prevalence of thalassaemia is high, as in my own PCT in Enfield, to consider putting in place a standardised policy with regard to the provision of oral iron chelators to prevent such delays in funding and, crucially, to avoid the distress and frustration for patients and clinicians.

I have talked about treatment and would like to move on to the matter of curing thalassaemia, which I hope the Minster will agree should be a long-term aim of the health system. The most common method for curing thalassaemia is by bone marrow transplants. The success rate of that method varies considerably, depending on various factors. The alternative to bone marrow transplants is umbilical cord blood transfusion. The Minister will remember that the last time I secured a health-related debate I spoke about the merits of umbilical cord blood. I have insufficient time today to describe the details of umbilical cord blood and the hopes for it as a future treatment. Nevertheless, it is important to make
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the point that cord blood is a rich source of stem cells, which could be tapped into without the complications that accompany bone marrow transplants.

To date, the number of cord blood transfusions for thalassaemia has been sadly limited, but one small study placed the success rate at 79 per cent. Does the Minister agree that cord blood holds out the prospect of promising future treatments for not only thalassaemia, but other blood-related disorders? Will she ensure that the necessary cord blood banking is available to reach the ethnic communities who need it most? I look forward to her colleague, the Minister of State, Department of Health, the right hon. Member for Bristol, South (Dawn Primarolo), meeting with the all-party group on umbilical cord blood and adult stem cells, which was recently launched to discuss the outcome of the cord blood review.

So much for the future, but with regard to the care for thalassaemia patients now, access to psychological support and community and social care is also needed. There is a real need, and indeed call, for the Department of Health to work with local government, social services and education services to provide thalassaemia patients with a care package that addresses those holistically—I know that that term is often bandied about, but in this case it is truly needed—and deals with the social, psychological and educational needs of the patient alongside their medical treatment.

The issues that I have raised reflect a wider problem, as thalassaemia is in many respects a forgotten condition, and that is perhaps shown by the fact that this is the first time we have had a debate on thalassaemia. It is now forgotten within the health service, but hopefully not in the House. Although there are several committed specialists, to whom I pay tribute, dedicated to the treatment of thalassaemia and similar conditions that should be given a proper mention, such as sickle cell disease, there is a general lack of training and funding for posts in the haemoglobinopathies for both doctors and nurse specialists. Most haematologists deal mainly with white cell haematology, such as leukaemia and other malignancies, and red cell medicine is very much the poor relation when it comes to the research grants and training available.

Also reflecting the low profile of thalassaemia in the medical world is the fact that many GPs are not properly aware of the condition. More needs to be done to educate GPs on the causes and symptoms of thalassaemia to ensure that patients are passed on to appropriate specialists as soon as possible.

Perhaps one of the reasons why the condition has not received as much attention as other rare diseases is, sadly, the population it affects. As I have mentioned, thalassaemia overwhelmingly affects people of south Asian and Mediterranean origin.

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