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Westminster Hall

Wednesday 23 January 2013

[Martin Caton in the Chair]

Terminal Illness (Access to Medicines)

Motion made, and Question proposed, That the sitting be now adjourned.(Mark Lancaster.)

9.30 am

Geoffrey Clifton-Brown (The Cotswolds) (Con): May I thank you, Mr Caton, and Mr Speaker for allowing me to hold this important debate today and particularly my hon. Friend the Minister for being here to respond? I am pleased to introduce this debate on such an important subject. A number of people have worked hard on this issue for a long time, and I am glad that their work has now come to fruition in this debate. The debate is on access to medicine for people with terminal illness, which is a subject that I and others have wanted to raise.

Ensuring that people with a terminal illness have access to medicine should concern us all. Unfortunately, such illnesses will affect many people, including many people in Westminster Hall today. It is unacceptable that so many people, when they are diagnosed with an illness, find that no drugs are available to help them to overcome their condition.

I hope that it is an area of common ground that we need to speed up the development and availability of drugs to treat life-threatening illnesses. The current testing and development process is too long, cumbersome and expensive. The Minister and I would agree on that, although we may differ slightly about what needs to be done about it.

A recent report from the Office of Health Economics found that, on average, it takes five years after the launch of a new drug for it to win approval from the National Institute for Health and Clinical Excellence. That amount of time can be more than doubled when added to the time taken for a new drug to go from the development stage through to phase 3 and beyond. It is also very expensive, incurring costs of more than £1 billion, and it can take more than 10 years to bring a new drug to market.

The impetus for this debate came from a meeting I had with one of my constituents, Les Halpin, in Portcullis House last year. The way in which Les set out his views on drug development inspired me to do all that I can for him and his campaign. He convinced me that a great deal of political pressure needs to be applied, to ensure that change is made.

Sadly, Les was diagnosed with motor neurone disease in May 2012. He has a doctorate in statistics, and following his diagnosis, he began to conduct a huge amount of research and talked to as many experts as he could to

“understand the disease that is probably going to kill me.”

Indeed, Les had an interview on BBC Radio Gloucestershire this morning and he was barely audible. However, we have kept in constant contact since we met, and I admire his bravery.

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Les told me that, equipped with his research, he began to understand MND better than many medical professionals, which is not surprising given his intellectual ability. The internet is a resource that enables many patients, especially those who suffer from a rare disease, to do the same type of research to some degree. Les poses the question on behalf of patients in similar situations:

“Why should they not be allowed to make informed decisions about their treatment?”

MND is an example of a rare disease for which there is no cure. It is a horrible disease, involving—over a period—all the organs of the body shutting down, leading inevitably to death. About 5,000 people in the UK suffer from MND; one in every 100,000 or so people will be diagnosed with it each year. The condition affects twice as many men as women.

The outlook for people with MND is very poor. People with limb-onset MND will live for three to five years, and people with bulbar-onset and respiratory-onset MND will live for even less time—probably two to three years—but slightly more fortunately, people with other less common types of MND can live for much longer and some people have lived with MND for decades; for example, the physicist Stephen Hawking, who was diagnosed with MND more than 40 years ago.

One medication, called riluzole, can extend the lifespan of some people with MND, but it has a very limited effect; on average, it only extends life expectancy by about three to six months. The drug was developed more than 20 years ago, and in the subsequent years, no new drug for MND has been developed or approved. So the real purpose of the debate is to highlight the lack of new drug development for people with rare and life-threatening diseases.

Having applied his statistical approach to the problem and having talked to leading experts from around the world, Les has concluded that it is very probable that it will require more than one drug to treat MND effectively. The problem is that clinical drug trials normally only test a single drug, which ignores the possibility that, as with the treatment of HIV, a cocktail of more than one drug is required. That is the key. Reform of how we develop, test and approve drugs is therefore crucial. Les sums it up in his own words:

“Imagine a world where MND patients worldwide have access to drugs at this stage of testing—they are proven safe for humans, and possibly known to be efficacious in other neurological diseases, just not for MND specifically. Patients are given the freedom to choose which drugs they think might help them; the process is monitored, and patients and doctors alike can report on their effects. Data is stored centrally, and thus can be analysed to determine the effects of individual drugs and of drug combinations. Ideally this requires some way of objectively measuring the progress of the disease—something which has not been possible in the case of MND in the past.

However, huge strides have been made recently in determining biomarkers for MND—measurable characteristics that reflect the progress of the disease. Biomarkers are also being developed or are available for other rare diseases that would benefit from this approach. Once a volume of data has been collected from thousands of patients worldwide, this can then be analysed and used to inform future research into these diseases, and influence investment from pharmaceutical companies.”

To his immense credit, Les has initiated a campaign to bring focus to such issues. It is called Empower: Access to Medicine and is designed to provide a new

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platform to open up the debate about the lack of drug development for patients with rare or life-threatening conditions. I am proud to be a trustee of the campaign, which is now a registered charity.

The campaign has already sought out the views and ideas of a range of respected individuals and organisations. For example, Dr Richard Barker, director of the Centre for the Advancement of Sustainable Medical Innovation, has rightly remarked that

“opening up the discussion around the lack of availability of effective drugs for rare and life-threatening diseases is a vital first step on the path towards accelerating new innovative drugs.”

I hosted an event in the House last June to enable a wide range of such people to meet Les and discuss his thoughts. I was particularly grateful to Lord Howe for meeting Les on the same day to discuss his thoughts in more detail.

As a patient-led movement, I believe that the Empower: Access to Medicine campaign has a real role to play in bringing all the stakeholders together. Also, I echo the words of Baroness Masham in a debate in the other place on 20 November last year, when she said that the campaign is

“a unique one, created for patients by patients. It is a powerful voice, rarely heard, but one that I believe could have a real impact on how pharmaceutical companies, regulators, politicians and the general public view drug development.”—[Official Report, House of Lords, 20 November 2012; Vol. 740, c. 1785.]

I will now take a few minutes to raise some of the issues that I believe require consideration by the Minister and her officials.

All drugs can have side effects. It is only through a full understanding of the efficacy of a drug or treatment that a patient can make an informed decision about what they want. From my conversations with Les, I have been struck by the fact that, for patients with life-threatening illnesses, the risk ratio—this is an important point—of “doing nothing”, as Les puts it, is hugely significant. Patients should have the ability to access all information on a drug, even if the risk of adverse effects or failure is great.

The director of Genetic Alliance UK, Dr Alastair Kent, sums it up well:

“Given that there is no such thing as a completely safe drug, the issue becomes one of establishing whether or not the anticipated health gains for patients are sufficient to outweigh the risks inevitably associated with prescribing a powerful (and potentially somewhat toxic) medicine to a patient with a serious and possibly life limiting disease.

Traditionally the evaluation”

of drug safety

“has been made by committees of experts—scientists, ethicists, clinicians etc sitting without patient and family input to their processes in order to reach a conclusion about whether or not patients can be allowed to take the risk. While it is clear that these experts have an important contribution to make, patients and families are”

in these days of openness and information

“increasingly demanding a say in this decision making process.”

The real kernel of the debate is that we address the risk aversion that can too often hold back the development of a new drug. Professor Sir Peter Lachmann, a former

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president of the Academy of Medical Sciences, and professor of immunology at the university of Cambridge, has argued that risk aversion has

“led to a false perception that most prescription drugs on the shelf are almost entirely safe. Unfortunately this is not (and never will be) the case. This misconception has meant that when things do go wrong people often, if understandably, look for someone to blame. This blame normally involves litigation; and that normally involves significant cost.”

In a recent article for QJM: An International Journal of Medicine, Professor Lachmann sets out his argument in more detail, and I warn Members that this bit of my speech is slightly legalistic. He focuses on the change in legislation in the 1980s, when the Consumer Safety Act 1978 was supplanted by the Consumer Protection Act 1987, which introduced the European product liability directive into UK law. In Professor Lachmann’s view, under the Consumer Safety Act, if a patient agreed to take a medicine that they knew had not been fully tested and thereby assumed the risk themselves, that prohibited any claim by them if some harm later materialised. Unfortunately, the Consumer Protection Act changed that, by introducing a system of strict liability, under which a person or company is legally responsible for the damage or loss caused by their acts or omissions, regardless of culpability.

Professor Lachmann rightly concluded that it is often the fear of litigation that drives a great deal of the regulation of medicines and, therefore, a significant amount of the cost behind drug development. Let us not forget that the cost of new drugs is also preventing small and medium-sized enterprises in the life sciences sector—many of them in our constituencies—from developing in the way that they should.

Professor Lachmann sets out four solutions, and I should be grateful to the Minister if she considered them carefully. First, we should abolish strict liability in this area and replace it with liability based on negligence. Secondly, we should revise the definition of negligence, so that in deciding whether it was negligent to seek to develop a new drug, account is taken of the consequences of doing nothing, as well as the consequences of trying to do something. Thirdly, we should change the law on waivers, so that any patient who is prepared to try a new medicine, with the risk that it may have unknown side effects, is at liberty to do so. Finally, we should, at least in this area, abolish the no win, no fee arrangements.

I was pleased to introduce Les to Lord Howe at a meeting in the Department of Health last June. I should therefore be grateful to the Minister if she set out the latest progress on the early-access scheme, which was first mentioned in the life sciences strategy published in 2011. As Lord Willis of Knaresborough said in the other place recently, the scheme could allow earlier access to drugs than the current regime permits. That is promising, but will the Minister confirm that the Government aim for the scheme is to produce just two to five new drugs a year? What can the Government do to significantly scale that up?

I would appreciate an update on adaptive licensing. There are different interpretations of what it means; but, in essence, it is a more flexible and streamlined approach to research and, I hope, the licensing of new drugs. One objective of the European Medicines Agency is to pilot a new approach along those lines, and my hon. Friend the Minister is to be commended for her decision to bid to host the pilot. Will she therefore

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outline the latest situation and what plans the Government have to ensure that the UK continues to take a lead on this issue?

I turn now to the report by the Select Committee on Health on NICE. The report, published on 16 January, touched on issues that are highly relevant to the debate. The Committee was highly critical of the delay in setting out precisely what a value-based pricing system for drugs entails. I share its concern, yet the section of the report focusing on research data and access to clinical trial data troubled me most. It is deeply concerning that drug companies have been allowed to withhold information about drug trials. Members should think about that for a minute. If a drug is developed, but it has unwarranted side effects and does not do the job it is supposed to, no one will know about research. Other drug companies will come along, do exactly the same research all over again and will have exactly the same problems. Surely, therefore, it is in everyone’s interests that the information is published.

I therefore fully support the Committee’s recommendation that there should be a professional and legal obligation to ensure that all regulators, including NICE, have access to all available research data about the efficacy and safety of new pharmaceutical products. Stephen Whitehead of the Association of the British Pharmaceutical Industry summed it up well when he told the Committee:

“negative trials often give you as much information that is helpful as positive trials.”

Few people would disagree with the Committee’s argument that it should be neither legal nor ethical to withhold research data about pharmaceutical products that are in clinical use. The Department will respond to the Committee’s report in the coming weeks, and I urge the Minister to reflect on this issue, even if she cannot say anything about it because her response to the Committee is still pending.

The ongoing consultation on the NHS constitution is another opportunity to strengthen patient rights and enshrine them in law. In particular, I urge the Government to seize the opportunity offered by the consultation to give more weight to individual patient choice and to allow patients greater freedom to determine what existing and new medical treatments they undertake. Will the Minister say when the Government will respond to the consultation on the NHS constitution and whether any proposed changes to it will be approved by Parliament?

I want now to move to a slightly different issue, because it would be relevant to mention the accessibility of end-of-life care. If it were not for the fantastic work that nurses and others do, many people who have had an experience similar to that of Les would have suffered a great deal more than was necessary. Some 73% of people, when they reach the terminal stage of an illness, want to die at home, surrounded and comforted by their family and friends, and it is a dismal fact that only 27% are currently able to do so. Access to a community or specialist nurse is a requirement for those who want access to medicine but who are unable to self-administer. This is a twofold problem, which can be solved only when adequate time is spent on the issues of access to medicine and end-of-life care.

I hope that the debate will ensure that these issues remain firmly on the agenda of my hon. Friend and her fellow Ministers. Many colleagues, from all parties and

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in both Houses, have taken a keen interest in these and related issues. Through his Medical Innovation Bill, my noble Friend Lord Saatchi seeks to address the issues that hold back innovative practice in the treatment of patients with life-threatening conditions. He has spoken movingly of his experience and that of his wife in this regard.

If the debate can in any way contribute to that process, it will be a fitting legacy for Les Halpin and his excellent campaign. Several people have asked me what the debate is all about, and the answer is simple: how would any of us who, God forbid, might develop a terminal illness gain access to an effective medicine? In future, what we need are not terminal illnesses, but treatable illnesses.

9.49 pm

Jim Shannon (Strangford) (DUP): I congratulate the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) on bringing the matter to the House. I want to focus on the end-of-life issues that he dealt with in the second part of his speech. Obviously those concern us all, but I want to concentrate on them because of several interactions that I have had with constituents on the subject, and because there is a need for drugs. I am confident that the Minister will respond positively and I look forward to her comments.

I have spoken recently about ending the so-called GP death list—a term that I use very carefully; some people see end-of-life issues in that way and are concerned. I was shocked when I read an article that stated that thousands of patients have already been put on those so-called registers,

“which single them out to be allowed to die in comfort rather than be given life-saving treatment in hospital”.

That is one thing that has emerged from discussions that have taken place. The article states that nearly 3,000 doctors have promised to draw up a list of patients they believe are likely to pass away within a year. It is claimed:

“As part of an unpublicised campaign endorsed by ministers, GPs have been encouraged to make lists—officially known as End of Life Care Registers”—

which the hon. Gentleman mentioned towards the end of his speech—

“of people they believe are going to die soon and should be helped to do so in comfort.”

That is the terminology that is used. In my opinion if a patient refuses further treatment this is their decision, not the doctor’s. Treatments must be made available throughout the NHS to those who want and need them—those who need care.

How many times have we heard of patients with no hope suddenly going into remission? An example concerning a child with cancer recently came to my attention. The doctor advised no more treatment, but the sister of the little boy was not ready to say goodbye, and for her sake the family asked for one more course of chemo to prolong the time left and prepare the other child for the expected death. The little boy responded to the chemo that was given in the hope of allowing a few more weeks of life; but that time has turned into six months. Who knows what the future holds? The point I am making is that there are probably many examples from across the United Kingdom where a wee bit of

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extra effort can be made and where it may not be necessary to prepare for the inevitability of death, if there is also a possibility of life through drug treatment. Imagine if that family had not been allowed to ask for, or the doctor had had the power simply to refuse, the last bout of chemotherapy. That is not an everyday occurrence, but it does happen and it should give us reason to pause and think before making drastic moves.

In 2008 the Labour Government announced a range of proposals aimed at improving the care available to patients with life-threatening conditions. They stated that a key part of the new proposals was a change to the way the National Institute for Health and Clinical Excellence decides which medicines are approved for diseases that affect only small numbers of people. The hon. Gentleman focused in his speech on some diseases that do not kill a great many people in the United Kingdom, and on which, therefore, drugs companies do not spend money; but perhaps they should. I want to discuss that issue. What has changed in the past five years? Is there a greater availability of drugs? I am not sure that that is the case, and would appreciate confirmation from the Minister of how many more medicines have been approved on the list. Many UK universities do great work investigating drugs and conducting research with pharmaceutical companies, and Queen’s university Belfast is one of them, at the forefront of the good work being done on new drugs for ailments including cancer, diabetes, and dementia and Alzheimer’s. Students come from all over the world to do research and to learn there. I commend the university, which has been able to source individual funding, and the many other UK universities doing similar work.

The campaign Empower: Access to Medicine, set up by a man suffering from motor neurone disease, recently caught my eye. The campaign calls for a review of the law and ethics on drug development, as it takes many years and billions of pounds to take a new drug to market from A to Z. The last drug licensed for motor neurone disease, which damages the nervous system, leaving muscles wasted and weak, was riluzole, which has been in use for 20 years. Can there have been no scientific advances since then? I do not believe that. Les Halpin has commented that

“to see primarily it’s the regulations that are slowing the whole process down, it just means we could be waiting an awful long time until a new drug is produced.”

I have a dear friend, whom I have known for many years, who has motor neurone disease. I have seen a healthy man go from being a fun person in the peak of health to someone wasting away in a chair. The drugs have given him a longer life, and perhaps a better quality of life latterly, but they cannot stop the onslaught of the disease. The finality of what will happen to him is clear.

Mr Gregory Campbell (East Londonderry) (DUP): Does my hon. Friend agree that beyond the difficult and onerous issue of NICE approval of drugs that he and the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) outlined, and which needs to be resolved, is the cost of drugs, post-approval? We need more work to be done on dragging down the cost, to make them more accessible.

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Jim Shannon: There are parts of the world where drugs can be made more cheaply, and they include India. The drugs in India are equal to those made in the USA, for example, but can be made more cheaply. Why do not we obtain those similar drugs, at a cheaper price, so that we can provide the relevant care, as my hon. Friend has suggested? We should take that on board.

The Parliamentary Under-Secretary of State for Health (Anna Soubry): I hope that the hon. Gentleman will be interested to know that last week I went to India where I had that precise conversation with several organisations. We hope that a memorandum of understanding will emerge, involving the regulatory bodies with which I had meetings. The hon. Gentleman is right to point out that we can take advantage of the great work being done in India to produce medicines that are just as good as those made anywhere else, and often at a fraction of the price.

Jim Shannon: Those are the sort of responses we hope to hear, because they show that the Government are working. The Minister, as we knew she would, has come up with a practical, physical response, and is doing the things that we have been hoping will come out of the debate. I thank her for initiating the process she outlined, and for moving things forward.

I am pleased to support the hon. Member for The Cotswolds in his cause of drawing attention to motor neurone disease, cancer and other illnesses, so that a treatment path will not be simply a step along the road to the end of life, but may enhance the quality of life. Perhaps a successful treatment path can be developed. According to Empower: Access to Medicine,

“Speeding up the development and availability of drugs that treat life-threatening diseases would benefit everyone in society.”

I believe that too. Everyone present will know people whom new drugs could help. The current testing and development process is long, cumbersome and expensive. In fact, a recent report by the Office of Health Economics found that it takes five years, on average, after the launch of a new drug, to win NICE approval. That time scale can be more than doubled when the time taken for a new drug to go from the development stage through to phase 3 and beyond is added. As an example, no new drug has been approved for motor neurone disease since riluzole was approved 20 years ago. Are we happy to sit back and rely on that one drug, or should there be more research? We need more research; we need to fund it, and we need it to be made possible.

Currently, pharmaceutical companies do not have a financial incentive to invest in developing new drugs for rare or “orphan” diseases—I am being careful in my terminology—because of the small number of the population who are affected and the high and uncertain costs of the drug development process. The drug regulatory regime is therefore clearly having a significant impact on those with life-threatening and rare diseases.

Just yesterday, the shadow Secretary of State held a meeting on special commissioning. Five speakers introduced the issues. The gentleman who spoke on cystic fibrosis said that drugs are available only in certain parts of the United Kingdom. He is worried that we are setting an imbalance, which I have taken up with my colleague back home, Edwin Poots, the Minister of Health, Social Services and Public Safety, to ensure that cystic fibrosis

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drugs are available to sufferers when they need them not only in England, but in Northern Ireland, Scotland and Wales.

The panel hosted by the shadow Secretary of State outlined the need for drugs allocation. There was a guy representing HIV patients, and 100,000 people in the United Kingdom are receiving HIV drugs to prolong their life. The man who spoke yesterday has lived for 20 years with the drugs that are available, but are those drugs available across the whole United Kingdom?

Geoffrey Clifton-Brown: I am extremely grateful to the hon. Gentleman for making those extremely good points. The point he makes about cystic fibrosis crystallises the health service’s dilemma. A small drug company came to me the other day, and told me that it has developed an absolute cure for a certain type of cystic fibrosis if it is caught very early in life. The problem is that the drug will have to be administered for life, and the life cost of the drug for the very small number of people whom the drug will absolutely cure, and whose quality of life it will improve, is £180,000. That is why his remarks on the need to drive down the cost of developing drugs in this country are so important.

Jim Shannon: I thank the hon. Gentleman for his constructive intervention. I take his comments on board, and I believe the Minister has a willing ear, too.

Geoffrey Clifton-Brown: My hon. Friend the Minister reminds me sotto voce that I was corresponding with her, and I am extremely pleased to say that she has approved the drug I mentioned. So that small number of people will now have an absolute cure.

Jim Shannon: If this goes on much longer, I would want the Minister to reply to every Westminster Hall debate, because we have asked for two things and got them both, which is good news.

I will now illustrate the need for drugs for three categories of people. The first category is those with dementia. There has been debate in the House and in the papers over the past week on dementia treatment. In Northern Ireland, we do not have the highest diagnosis rate for dementia in the United Kingdom, but at 63% the diagnosis rate is high. The support services are perhaps not as equal to that as they should be, which we will take up with the Minister to see how we can improve.

The facts are that some 370,000 people have not yet been diagnosed for dementia treatment—first it is diagnosis, and then it is drugs—so there is a combination of how the health system works best. People are given drugs including Aricept, which reduces symptoms and slows progression. The drugs might not always cure the ailment or disease, but they certainly can improve life and make it a wee bit more amenable.

The second category is cancer, and there will not be a family in the whole country that has not been touched in some way by cancer. The Government have set up what they refer to as a “fast track” for cancer patients. There is some indication that the fast track is perhaps not working in the way that it should, but the Government have a £750 million cancer strategy, which plays a key role. As with dementia, the strategy is diagnosis, early intervention and prevention through all the surgeries and clinics across the United Kingdom.

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The third category is breast cancer. A new breast cancer drug has had some coverage in the press over the past few weeks. The Minister has been tremendous in her response to our points, and perhaps she could give us some indication of how that drug will be made available to those with breast cancer. The drug has the potential to prolong life. The papers have said that, for some people, the drug can prolong life for 20 years. Such drugs must be available if that is the case. I am keen to hear how that will go.

It is long past time to take active steps to ensure that terminally ill patients or patients with life-threatening conditions are not simply given a form of end-of-life care—it has to be more than that—but are treated for their conditions. New drugs and medications should be actively sought, instead of accepting a diagnosis of illness as a death sentence.

The hon. Member for The Cotswolds mentioned hospice care. We are fortunate to have so many organisations, and if I name some, I will leave some out, so I am not going to name any. They all do tremendous work. The hospice care those organisations deliver to the person who is dying or recuperating and the help they give to families is tremendous. We owe them a lot.

I support the hon. Gentleman in this debate, and I am disappointed there are not more people here, because it is a debate that affects us all. Our constituents would be keen to ensure that we are involved in this debate.

We have been fortunate this morning to have very positive responses from the Minister, and I look for more. What steps are this Government, and our Government in Northern Ireland, taking to ensure that another five years are not lost and that we can make a change to bring hope, instead of despair, to those who refuse to accept a one-size-fits-all diagnosis and who wish to have access to the best drugs available at a price we can afford and that delivers more treatment and care for everyone?

10.6 am

John Pugh (Southport) (LD): I thank the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) for introducing the debate and explaining this important issue so well. I also pay tribute to Les Halpin, whom I had the privilege to meet. I use the word “privilege” exactly, because it was a privilege to meet someone who is so afflicted and yet so thoroughly constructive.

I once had the opportunity to attend a session with the National Institute for Health and Clinical Excellence when it was investigating a particular drug for a complaint called ankylosing spondylitis—I have not written that in my notes, so Hansard is on its own. The session was robustly and impressively chaired, and the drug and issues concerning it were thoroughly examined. During my period in Parliament, NICE has come up again and again, and various complaints have been raised by Members of Parliament, the pharmaceutical industry and patient groups. One complaint is about the inordinate time it often takes to develop a drug, which certainly appears to be the case; the other complaint, made by big pharma, is the cost that NICE adds to the development of drugs.

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The example of India has been cited, but I am not sure that that is a good parallel. I have been to India and spoken to pharmaceutical companies out there, and they seem to specialise not in developing the more esoteric lines of drugs but in developing and marketing lines of generic drugs or taking up drugs that are out of patent and producing them at less cost than their western counterparts.

NICE would genuinely acknowledge that it adds to the cost of development, but there is also a question about its rigorous but circumscribed methodology. There were many debates in this place a few years ago about Alzheimer’s drugs, and the issue appeared to be not that the drugs do not work, but that they do not work for everyone in a sufficiently predictable way for NICE to approve them; although I have met constituents who can genuinely testify to the benefit of a drug that NICE is not prepared to go with. Of course, there are similar cases in which people genuinely disagree with NICE’s decisions. Most Members of Parliament will, at some time during their career, write a letter on behalf of a constituent who simply cannot get a drug because a primary care trust is sheltering behind the mantra that NICE does not approve. All that set aside, NICE represents a model that has been emulated worldwide, because with NICE we end up with cost-effective, efficacious and safe drugs.

To go back to the case I witnessed in NICE headquarters many years ago, I was surprised that sufferers with that particular complaint were in the room and thoroughly involved in the process. As the process went on, however, I discovered that one of the people—the reference point, as it were, for the piece of research—had died during the project. That, perforce, will happen many times if one enlists people already diagnosed with a terminal illness; some people’s needs are more urgent, some have less to lose and in the case of terminally ill people, some are not classified in that way unless there is no available cure.

A reasonable case can be made for relaxing the rules, to have more trials and to get more innovation in such circumstances; patients, science, medicine and future patients would all benefit, provided, of course, that the patient was genuinely a volunteer and properly advised of the risks. Another proviso I have just thought of, as India was mentioned, is that the volunteer was afflicted with the particular complaint, because in no way would we be happy with a world where people were trialling drugs for reasons other than their own benefit.

The question is, should we have a more flexible system than the orthodox one that we have put in place through NICE? I was at a breakfast this morning about NHS research, and I was pleased to learn that over the past decade or so, the number of NHS patients featuring in research has increased appreciably. Apparently, a decade or so ago, only about 2% of cancer patients featured in a clinical trial or piece of research, whereas now the figure is some 20%, which is a significant improvement, so we must not kid ourselves that even in the orthodox setting of the NHS valuable pieces of research are not being conducted.

As I see it, there are still arguments against what Les is suggesting, and he must be acutely aware of the force of some of those arguments. The Minister is a lawyer

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and, even with a disclaimer in advance, it is difficult to avoid the spectre of litigation if a drug that has not been thoroughly stress-tested is in use; it is hard to assure oneself that it is not at least a possibility. Cost might still be an issue, if the drug is very expensive, and the NHS has to consider carefully whether to spend a lot of money, perhaps to no effect. There is always the possibility of an unsafe medicine or of one that has not been thoroughly tested having catastrophic effects and worsening someone’s decline. That can happen even when the drug is tested; everyone can recall that thalidomide was tested, quite thoroughly in some respects, but not to the nth degree, with disastrous consequences.

Such entirely valid considerations are not a case against a different regime in principle, they are a case against what might be regarded as a gung-ho approach. After all, as the hon. Gentleman said, all medicines have side effects. The worst thing someone can do when prescribed a medicine is to take out of its box the long sheet listing all the possible side effects; if they read it, they simply would not take the medicine, regarding themselves as safer by not taking it. Where a drug has no known side effects and there are genuine grounds for belief in its potential benefits, some sort of pre-approval system is genuinely arguable for terminally ill patients, rather than having to wait for full NICE approval—the full works. Flexibility is not a non-legitimate demand in any context. We have to bear in mind that although there are general rules, there will always have to be sensible provisos, exceptions and caveats about an application.

I am reminded of the forthcoming ban on the use of opiates when driving. I am obviously keen that people under the influence of methadone or heroin do not take those drugs and then get in a car. Some people, however, have long-term, chronic conditions and are taking an opiate, but they are well used to the symptoms provoked and could or should be safely allowed to drive a car. I am sure that they would drive the car with no difficulty at all. Whatever rules we have need to be flexible for such cases. Likewise, whatever rules we have about the safety of medicines need to recognise that for some people, the environment in which they are taking the medicines, their circumstances and the risks they face are quite different. We need flexibility, where the risks are limited and where the benefits to science and the individual are potentially massive. There has to be an intelligible response of some sort to the sincere request made by the hon. Gentleman and by Les Halpin.

Furthermore, I agree with the hon. Gentleman on another extremely important issue—I did not expect him to raise it, but he did. If we are looking at a more innovative, research-based NHS, it would help enormously if pharmaceutical companies signposted the dead ends they have been down, indicating where things had not worked. That would save enormous sums of money, possibly for their competitors but certainly for the health of the nation and the NHS. I congratulate the hon. Gentleman and reiterate my sincere tribute to Les Halpin. I hope that he is in good shape today and listening to the debate, and that we can get a result for him.

10.16 am

Mr Jamie Reed (Copeland) (Lab): It is a pleasure to be called to speak under your chairmanship again, Mr Caton.

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I extend my sincere thanks to the hon. Member for The Cotswolds (Geoffrey Clifton-Brown) for securing this important, emotive and timely debate. He laid out the issues in a compelling fashion, complemented by the testimony of other Members from across the House. The debate comes a day after my right hon. Friend the shadow Secretary of State held a specialist commissioning summit in the House to discuss some of the very issues before us today.

When dealing with terminal illnesses, it is important to recognise all of the lives affected by terminal and degenerative illness. It is important that stories and experiences of those with such diseases inform our debate, so that we do not focus purely on statistics. Behind every statistic is an individual and a family with real human issues that wear no party colours, and they may have no interest in our party colours. I am sure that all hon. Members have experience of constituents who have suffered from such debilitating illnesses and realise the importance of doing whatever we can whenever we can to improve their access to treatments that could improve their quality of life. I express my most sincere best wishes to those people dealing with terminal conditions today, and to their families, carers and everyone whose lives they touch.

I also praise the constituent of the hon. Gentleman, Mr Halpin, for the work that he does to highlight the issue and to push for improvements and greater access to drugs to improve palliative care. Today’s debate is proof that this place can be influenced by the public and by individuals—individuals can make a difference. We must look at what we can do to improve access to medicines and we must continue to explore ways and methods to encourage the synthesis of new drugs and to make those available to patients as soon as possible, while also maintaining the fundamental focus on patient safety, as has been said. That is a fine balance to strike and I look forward to learning how the Minister plans to address it.

Making new, safe and effective treatments available to all patients who require them must be the end goal, but it cannot be an isolated goal. We must look at ways to increase the availability of already licensed drugs and we must look at non-drug-based treatments as well, which can vastly improve the quality of life for patients in need. A number of charities have expressed a view that a move to adaptive licensing of drugs could benefit patients. The European Medicines Agency suggests:

“Adaptive Licensing seeks to maximise the positive impact of new drugs on public health by balancing timely access for patients with the need to provide adequate evolving information on benefits and harms”.

It must be recognised that adaptive licensing would bring a number of benefits, such as encouraging pharmaceutical industries to develop new drugs and to bring them into service quickly. It is suggested that new drugs could be available after phase 2 testing, the main focus of which is safety rather than efficacy.

There are, however, a number of issues with that approach. After phase 2 testing, drugs might be expected to be safe for human consumption, but the efficacy of any drug would still not be proven. Going on to prove efficacy at stage 3 could raise some ethical and personal difficulties. At present, a phase 3 trial is needed to demonstrate that any drug is effective. Under adaptive licensing, would those with early access be classified as

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part of a conventional phase 3 trial? If early access formed part of a conventional phase 3 trial, would existing trial guidelines be maintained for the use of data received on early access recipients? Clearly, ethical and personal issues would arise from both questions.

First, how can the efficacy of one drug be compared with that of another, existing drug, or with a placebo? Using blind tests in which one drug is administered to one group, and another drug or placebo is administered to another group would raise ethical issues. Doctors might knowingly deny access to a drug that has been proven to be effective because of the chance that a new drug could also be effective. Secondly, on a personal level, how could we be sure that patients are fully comfortable with and aware of the risks of taking medicines before they are fully approved under the current system? I acknowledge the point made by the hon. Gentleman about the patient being in charge of the choices with which they are presented, and more fundamentally in charge of their own treatment and destiny.

We must be careful not to suggest that adaptive licensing is risk-free and the only logical solution to a problem. Patients participating in early adoption of medicines might have better access, but there would be clear and obvious risks. That is not to say that we should discourage the synthesis of drugs that are less effective than those that already exist. The development of drugs is clearly a highly precise science, but the application and treatment of medicines sometimes resembles an art form. For some patients, the most effective available drugs are useless and, for want of a better phrase, less effective drugs could be invaluable.

I raise these issues not because we should oppose the introduction of adaptive licensing, but because we must fully explore the ramifications of introducing a change on this scale, and I look forward to hearing how the Minister plans to tackle these delicate and fine issues. We must also understand what it would mean for our life sciences and our research and development capability in the UK, but first and foremost, and fundamentally, what it would mean for patients and patient choice.

In the spirit of this debate, we should look at ways to improve care and provision of other types of available treatment, such as care facilities in communities, and assistance for patients at home. The care a patient receives does not depend solely on the medicines they receive, although clearly that is hugely important, and we should continue to explore ways in which that can be widened.

It must be noted that, as other hon. Members have said, very few drug options are available to people with terminal illnesses such as multiple sclerosis and motor neurone disease. As well as doing everything we can to speed up the development of new drugs while protecting patients’ well-being, we should explore other methods of treatment for those with terminal illnesses. We must all acknowledge that the NHS is always changing as society changes. The art of drug and medicine application demands a more bespoke and tailored patient experience and more wide-ranging treatments.

The principle behind adaptive licensing is commendable, and one that anyone would find difficult to oppose. It would ensure better access to drugs, but it would not necessarily alter things that much. As has been said, pharmacology recycling bins are filled with trials for

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promising new medicines that ultimately proved to be ineffective or even dangerous. Loosening access to trial drugs requires greater peer reviewing of early data and methodology to ensure patient safety.

There is a strong argument for allowing more off-label prescribing of drugs that have already passed safety tests. They could be an option open to doctors and patients if they are believed to be effective in treating a condition they were not originally intended for, and I would be extremely interested in hearing what the Minister has to say about that. Even if adaptive licensing was adopted now with a robust system of safeguards in place to protect the well-being of patients, those with terminal illnesses would not start to see improved access for a number of years. We are all aware that drug manufacturing does not happen overnight.

One of the harsh realities of debates such as this is that changing regulations today will not benefit patients tomorrow or the day after. What we need right now is improved care for those with terminal illnesses, and support for their carers. Improved facilities offering specialised care would go some way to improving patients’ quality of life, as would earlier, faster diagnosis of terminal conditions. All Members of Parliament have heard of cases of suffering that could have been prevented, and diagnosis that could have been earlier, resulting in a better experience for patients and their families.

Access to drugs may vary throughout the country and that cannot be tackled by a fractured system. That is a huge concern as we move towards April and beyond. I hope the Minister will explain how she can guarantee that a clinical commissioning group in Cornwall meets the same standard in access to medicine as a group in Cumbria. Adaptive licensing would improve access to drugs, but not without risks, and I hope the Minister will be able to outline a safe and secure framework that could be put to the House for greater scrutiny. At this stage, not enough research has been done to guarantee that access to drugs can be expanded through adaptive licensing without exposing patients to ineffective and potentially dangerous drugs. I hope that much more work will be done to show that a patient’s well-being and quality of life can be protected while ensuring that more drugs are made available.

Geoffrey Clifton-Brown: The hon. Gentleman has touched on an important matter than has not yet arisen in this debate: the possibility of different protocols for prescription of medicines by different clinical commissioning groups. My gentle suggestion to the Minister is that it would be unacceptable if the new system developed a postcode lottery whereby people in some areas had access to a new drug, but people in others did not.

Mr Reed: I thank the hon. Gentleman for his contribution. He is entirely right, and I do not believe that any hon. Member in the House would want that. Many of us have seen and read accounts of the problem he illustrates, and we must not hasten any further move towards that. We should all seek to address such issues as and when they occur.

The hon. Gentleman intervened just as I was coming to the end of my remarks, and I look forward to hearing the Minister’s response.

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10.26 am

The Parliamentary Under-Secretary of State for Health (Anna Soubry): It is a pleasure, Mr Caton, to serve under your chairmanship. I congratulate my hon. Friend the Member for The Cotswolds (Geoffrey Clifton-Brown) on securing this debate on a subject of which he clearly has considerable knowledge. I thank other hon. Members who have spoken, and pay tribute to the work done by Empower: Access to Medicine, particularly that of Mr Les Halpin, who has been spoken about in glowing terms. I add my good wishes to him to those of my hon. Friends the Members for The Cotswolds and for Southport (John Pugh)—the latter is giving me a thumbs-up, as I remembered the correct name of his constituency. A great failing of mine is not to remember it. I hope that Mr Halpin is able to watch this debate, and I know that he and many others will want to read it.

If I may say so, the debate is a good example of Parliament at its absolute best. Yet again, there is a story in one of the papers criticising Members of Parliament for expenses properly incurred. If only the press, instead of printing another knocking story, would come along and listen to debates such as this when important issues are put into the public domain with care and considerable knowledge. As is often the case in such debates in Westminster Hall, there has been an outbreak of political unity. Political parties play no part in this issue, and Members properly ask the Government tough questions. I pay tribute again to my hon. Friend the Member for The Cotswolds because he is a pleasant thorn in the Government’s side, and properly so. He has raised and is championing an issue that a constituent brought to his attention, and is holding the Government to account.

I fear—well, I know—that I cannot answer all the questions that my hon. Friend and the hon. Member for Copeland (Mr Reed) have asked and, as is the usual rule, if I cannot do so, my excellent officials will provide written responses. The matter is not in my portfolio—I am not making excuses—so I am not particularly familiar with it, and I am grateful for the excellent briefing that has been provided by my officials. Perhaps I will be forgiven for reading out a large part of my speech, which I do not normally do because I like to look as though I understand everything I am speaking about, but the subject is important and technical.

I would like to take credit for the approval of Kalydeco, a drug for cystic fibrosis users, but it was the National Institute for Health and Clinical Excellence that gave approval for it to be prescribed. The only reason I know anything about it is because one of my constituents wrote to me. A cystic fibrosis campaigning group has quite properly been contacting Members of Parliament, urging them to make all the representations that they can about the benefits of the drug. A very small number of people will benefit, because it relates to those who have cystic fibrosis because of a particular genetic disorder, but it will undoubtedly revolutionise their lives. I was certainly pleased to see that it will now be available for prescription.

The development of new medicines is a long and expensive process, as we all agree. The Association of the British Pharmaceutical Industry estimates that only one in 5,000 researched new compounds receive regulatory authority approval, taking 10 to 12 years on average. That is the scale of the research and the difficulties, in many respects.

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The life sciences industry is undergoing rapid change. The time and cost involved in developing new medicines is rising, and the old “big pharma” model of having thousands of highly paid researchers working on a pipeline of blockbuster drugs is declining. A new model of collaboration, about the outsourcing of research and early clinical trials on patients, has emerged. Many patients with serious or life-threatening illnesses, who understandably expect that they should be able to access the latest and most effective treatments, feel that regulatory procedures can hamper access.

Turning to life sciences strategy, this country has a strong history of drug discovery and development, and improving access to medicines has long been a Government priority. The “Strategy for UK Life Sciences” was launched in December 2011. Recognising the issues facing the life sciences, the 10-year strategy includes measures to support innovation and early-stage development. My right hon. Friend the Prime Minister published a progress report and refresh of the strategy only last month.

My hon. Friend talked about adaptive licensing, as did other hon. Members. I would like to set out the arrangements that we are putting in place for an adaptive licensing pilot programme, with the objective of advancing and maximising the potential of existing flexibilities in the drug licensing processes to improve public health and stimulate innovative drug development.

The Medicines and Healthcare products Regulatory Agency—I shall refer to it as the MHRA, as opposed to its otherwise very long name—has convened an expert group on innovation in the regulation of health care and agreed to a tripartite programme to take that work forward. It includes work at EU level on how the existing flexibilities in EU regulation can be used to bring forward innovative products; work at national level exploring options to help companies maximise the potential of existing drug licensing processes; and work at arm’s length from the MHRA and Government. The co-ordination of some other activities required for the pilot will be undertaken by the Centre for the Advancement of Sustainable Medical Innovation, including the exploration of suitable candidate products. However, pharmaceutical companies must come forward and nominate candidates for adaptive licensing.

Last year, we consulted on an early access scheme to make certain new and promising medicines available to patients in the UK before they are formally licensed. The MHRA is currently assessing the consultation responses. If introduced, the early access scheme would be designed for promising new medicines that will treat, diagnose or prevent life-threatening, chronic or seriously debilitating conditions without licensed treatment options. It would provide a scientific opinion from the MHRA on the benefits and risks of a new medicine about a year before the licensing process was completed. That additional information would assist both clinicians and patients in making treatment decisions in areas of unmet need, such as those described earlier by my hon. Friend. Both programmes are in a very early stage of development, as I think we all appreciate, and we will have more to say on that in the near future.

Turning to stratified medicines and genomics—I cannot pronounce it, but I am sure that Hansard will correct me if I get the word wrong—ongoing work on stratified medicines will improve our understanding of why groups

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of people with particular diseases respond differently to treatments. That point was very well made by my hon. Friend the Member for Southport. Our initiative to sequence 100,000 whole genomes from NHS patients will provide valuable information for researchers to gather new insights into health and disease and to develop new diagnostic tools and treatments.

Rare diseases are classified as conditions affecting no more than five in 10,000 people in the EU. Patients with rare conditions deserve the same quality, safety and efficacy in medicines as those with more common conditions. Since the pharmaceutical industry has little interest, under normal market conditions, in developing medicines intended for small numbers of patients, the EU offers a range of incentives to encourage the development of what are called “orphan” medicines in order to address the unmet clinical need.

Applications for the designation of orphan medicines are reviewed by the European Medicines Agency’s Committee for Orphan Medicinal Products—in its short form, the COMP. Via the MHRA, the UK takes an active role in the decision-making processes at the COMP, ensuring that applications for orphan drug designation are appropriately recognised and encouraging companies to develop their products further. Taking that one step further, I join the hon. Member for Strangford (Jim Shannon) in paying tribute to the research being undertaken at Queen’s university Belfast, and I know that many other universities throughout the whole United Kingdom are doing research into that sort of medicinal pharmaceutical advancement. They do not have some of the constraints of pharmaceutical companies, or perhaps the desire that some of those companies have to make a profit, so it is often universities that are best placed to do some of that invaluable research and development.

Jim Shannon: The work that is done at Queen’s university could not happen without partnership with the pharmaceutical groups, and clearly, they can use the partnerships to their advantage in creating new medicines. Partnerships are what life is very much about. A partnership is how we can work together to make it better, and that is a partnership that can work.

Anna Soubry: I am grateful for that intervention and I completely agree. It is great when we see business working with our universities on research. It can be highly productive and undoubtedly mutually beneficial, including to the rest of society, and that collaborative approach is much to be welcomed. It is fair to say that many universities, at first, had a bit of resistance to working with business, seeing it somehow as sullying themselves. However, over time they have recognised the absolute mutual benefit to both and, of course, that includes, should it be successful, a benefit to society.

Mr Jamie Reed: I am grateful to the Minister for her contribution. It is clear that there is an emerging cross-party consensus—dare I say it, a coalition—which is a tremendous sight to behold for everyone who cares about this issue. She talks about the difficulties posed by the research and development sector when it comes to manufacturing medicines for orphan diseases, and the costs inherent in producing them because of the market basis on which they are produced—no argument there. However, could

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she explain how that might affect the commissioning choices of clinical commissioning groups when it comes to purchasing those very same medicines, given the inherently inflated costs?

Anna Soubry: I cannot give a short answer in this debate, but that is important and it has been raised by a number of hon. Members. On that basis, I will ensure that a proper and full written response is given, both to the hon. Gentleman and all other hon. Members—I suspect that my hon. Friend the Member for Southport and the hon. Member for Strangford will also be interested in the answer. All present will certainly get a written answer to that, because it is an important point; clarity is clearly being sought, and it will be given.

Returning to NICE, once effective new drugs are brought to market, it is important, as we all know, that they are made available to the patients who will benefit most from them on terms that represent value to the NHS—that means, of course, value to the taxpayer. NICE has played an important role in that by providing robust, evidence-based guidance to the NHS on drugs and treatments. In the great majority of cases, NICE now publishes draft or final guidance on significant new drugs within a few months of their launch. In 2011, for drugs appraised using its single technology appraisal methodology—the methodology used for the great majority of new drugs—NICE issued draft or final guidance an average of four months after the date of market authorisation. The end-of-life flexibilities introduced into NICE’s appraisal process from 2009 have allowed a number of important drugs for terminal illnesses affecting a small number of patients to be made available on the NHS.

The NHS constitution sets out patients’ rights to medicines positively appraised by NICE, underpinned by a statutory funding direction. In December 2011, the NHS chief executive’s report, entitled “Innovation, Health and Wealth”, introduced a NICE compliance regime to help to ensure that medicines approved by NICE are made available on the NHS quickly and consistently. Furthermore, since the cancer drugs fund started operating in October 2010, more than 25,000 patients have received cancer drugs that they would previously have been denied. Our priority is to give NHS patients better access to effective and innovative medicines. That is why we will move to a system of value-based pricing for new branded medicines from January 2014, following the end of the current pharmaceutical price regulation scheme.

Geoffrey Clifton-Brown: I am grateful to the Minister for giving way, because I sense that she is coming to the end of her speech. Could she comment on two aspects that I raised? The first is the early access to medicines scheme. Quite rightly, the current licensing scheme is intended to eliminate all risk, but could there not be a system whereby, for people with a terminal illness, a drug might be given a provisional licence on a fully informed patient basis so that it could be trialled by those people, perhaps for the benefit of others coming along afterwards? Secondly, could she comment on the issue of strict liability—the legal liability for drugs of this sort being given, which makes it very difficult for people to use such techniques?

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Anna Soubry: I am very grateful to my hon. Friend for raising those points. As he will understand, I cannot give a commitment either way on them, but they are very important points—points that I took not only out of his speech, but out of the speech of my hon. Friend the Member for Southport, who referred to me as a lawyer. I am a criminal lawyer, but I am not trying to take any responsibility for this, because it is a long time since I studied negligence and strict liability. However, I absolutely accept that there is a very strong argument to be made that the current state of the law does not help. Equally, there is a strong argument, as has been advanced, about people with a terminal illness being able to be prescribed medicines on a provisional basis, in precisely the sorts of conditions that my hon. Friend the Member for The Cotswolds described.

The hon. Member for Strangford, in particular, raised end-of-life care. That is a very difficult issue. It is the subject of almost endless debate in this place, or at least it should be. For what it is worth, my personal view is that often these matters should be the subject of discussion between a patient and their GP. Although it was many years ago that my father faced a terminal illness, he spoke at length, before the final stages of his illness, with our then general practitioner, who was utterly brilliant, about his death and how that death could be in some way planned for, if it is ever possible to do such a thing. Sometimes that can be done. There is sometimes a certain amount of flexibility to be able to plan a death and to say what one does and does not want. These are intensely personal matters. I sometimes think that there is a danger of over-regulation and almost too much transparency, if there can ever be too much transparency. Sometimes it prevents what should be very private discussions.

The other thing to say is that families, too, often feel excluded from many of these decisions. It is important that families are involved as much as possible, especially when the person is quite elderly. We all know the sorts of case that exist. Perhaps this is an old-fashioned view, but I think that the unique and very special relationship between a patient and their GP—perhaps their nurse as well—is incredibly important, and there should almost be an acceptance that it is between the two of them in the final stages.

Like many Members, I suspect, as a constituency MP I have received letters from constituents who have spoken with real distress about their hopes for the final stages of a loved one’s life just not being recognised. I think that it was the hon. Member for Strangford, or perhaps it was my hon. Friend the Member for The Cotswolds, who talked about the number of people who wanted to die at home but were not able to do so. [Interruption.] It was my hon. Friend, but I am sure that the hon. Gentleman would take up the point as well. As I said, a number of my constituents have spoken very movingly about this. I am thinking of one particular case in which a woman described how she had sat and talked with her late husband about the desire for him to die at home. They were sensible people who had thought these things through, but as it happened, because of a failing in palliative care—we have not got it all right, by any means—that did not happen. That is terribly sad and, frankly, in many cases there are no excuses for it. I am digressing, Mr Caton—forgive me—but I think that we

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should be able to have a more open and honest debate, which would then bring up the very issues that my hon. Friend has raised.

I have almost concluded my remarks, but I want to touch on a very important point raised by my hon. Friend the Member for Southport about India. I think that I am right in saying that he said that, in his opinion, India did not have a particular history of innovation in creating new drugs. But my view is that it does have a remarkable capacity to look at existing drugs and produce them considerably more cheaply than other countries, including ourselves.

When I went to India last week, one of the things that I came away with was that what drives the Indians is affordability. As might be imagined with a population of 1.2 billion, there are excruciatingly high levels of poverty and deprivation, but there is also an emerging health care system. I know that there is a great deal of research, which is being led by the desire of doctors to improve clinical outcomes. The doctors often go to great research institutions and say, “How can you help us to develop this?” or “How can we solve this problem?” There is therefore innovation in India but my hon. Friend’s point was a good one.

I understand that the development of new drugs for rare and life-threatening diseases is vital, and it is important to the coalition Government. I hope that I have been able to illustrate the breadth of the work that the Government are undertaking to improve access to new and existing medicines for NHS patients and to encourage the development of important new drugs to treat life-threatening diseases. I can assure my hon. Friend the Member for The Cotswolds and others that the Government’s priority is to ensure that NHS patients are able to access the most appropriate treatments to treat and manage their conditions.

10.47 am

Sitting suspended.

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Housing Benefit and Disabled People

11 am

Jeremy Lefroy (Stafford) (Con): It is a pleasure to serve under your chairmanship, Mr Caton. I welcome the Minister to her place and offer belated congratulations on her appointment. I wish to raise with her the effect of the changes to housing benefit on people in the social rented sector who are deemed to be under-occupying a property. I thank my constituents John Turner and Matthew Hancock, Karen Armitage of Stafford and Rural Homes, and my colleague Pauline Ingall for bringing this matter to my attention.

From April 2013, size criteria for new and existing working-age housing benefit claimants will be introduced; they will replicate the size criteria that apply to housing benefit claimants in the private rented sector. The Department for Work and Pensions’ impact assessment estimates that out of 660,000 claimants affected by the new rules, some 420,000 are disabled. The impact assessment offers the explanation that

“Disabled claimants are, on average, older than non-disabled claimants. One consequence of this is that disabled claimants are also less likely to live in households with children… Fewer people living in a household means that large accommodation cannot be justified under the size criteria, and Housing Benefit entitlement is reduced.”

In the debate on the Welfare Reform Bill last year, I raised the matter of disabled people sometimes needing more rooms than provided for by the rules. One family in my constituency with disabled adults and children needed separate rooms for the couple and a separate room for one of the children under the age of 10. The then Minister for disabled people, my right hon. Friend the Member for Basingstoke (Maria Miller), gave a clear answer. She said that

“if a disabled person has the need for an overnight carer, additional rooms can be allocated. Indeed, if there are disabled people in the house who require rooms, there will be clear support there for them to be able to have those rooms.”—[Official Report, 1 February 2012; Vol. 539, c. 937.]

I also raised the question of adaptations, which have sometimes had many thousands of pounds spent on them to enable a disabled person to live in the property. It does not make sense for people to move from such properties to others that will themselves require costly adaptations. I therefore welcomed the fact that of the additional £30 million per annum being added to the discretionary housing payment scheme by the Government from April this year, £25 million is intended to be used

“specifically to assist those disabled claimants who are in properties where a significant adaptation has been made to cater for their individual needs.”

I have contacted the two councils in my constituency to ask them how they intend to allocate the additional funding. Stafford borough council has been working with housing associations to identify tenants affected by the new legislation. It will be concentrating its extra funding, which I estimate to be some £75,000, on disabled people whose property has been adapted and on foster carers; the support will be for 12 months. South Staffordshire district council, which has an additional £64,000 funding, will give short-term support, one to three months, to disabled people with property adaptations. The support is short term, because the council wishes to assess the situation before it commits to the longer term.

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Both councils have been proactive in arranging mutual exchanges of properties between those who have spare rooms and those who are overcrowded—they have been doing exactly what the Government wish to encourage. However, both councils face serious shortages of one-bedroom properties for couples or singles, as much of the housing in the area has two bedrooms. That raises two questions for the Minister. First, can councils be sure that they will continue to receive at least the level of additional funding each year for discretionary housing payments that has been granted in 2013-14? Given that much of the funding will be for disabled claimants in adapted properties in which they are likely to live for many years, the need for DHPs will continue. Secondly, is the guidance for the assessment of the number of rooms required by disabled people being set out in the terms that the Minister used to me in the House last year? In addition to the case I mentioned, there are instances where disabled people live on their own or as a couple in a two-bedroom property with little or no storage space, and they tend to use the second room, which is often small, to store equipment that they need—perhaps a wheelchair or a mobility scooter. My understanding of the Minister’s comments in the House last year is that the second room should not be counted as a bedroom.

Ian Lucas (Wrexham) (Lab): The hon. Gentleman is making a compelling case. Some of the individuals affected are severely disabled and the uncertainty that he has outlined is creating great worry, and not just for them; some parents of disabled people are also concerned about the situation. Is it not imperative that an element of certainty is introduced to the system?

Jeremy Lefroy: I thank the hon. Gentleman for that intervention and I agree with him. Certainty is vital, which is why I am asking for clarification, and hopefully clarification in the terms used by the then Minister for disabled people in the House of Commons last year.

John McDonnell (Hayes and Harlington) (Lab): I thank the hon. Gentleman on behalf of the whole House for pursuing this matter so consistently, and I congratulate him on having the benefit of having as a constituent John Turner, who I know is an assiduous campaigner on this matter.

Consistency across the country is also necessary. There needs to be monitoring by central Government of how the policy is being applied, because I think we will discover, as we are already discovering in some areas, inconsistency of approach by individual councils.

Jeremy Lefroy: I thank the hon. Gentleman for his intervention. He is right: in the two cases that I have outlined of Stafford borough council and South Staffordshire district council, we can already see some differences. Those differences have arisen not for ideological reasons, but because each council takes a slightly different approach. I am all in favour of local councils making their own decisions, but if we end up with a situation wherein some councils’ conditions for DHPs are drastically different from those of other councils, there will be serious problems. Of course, there is also the question

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of the different profile of housing stocks in different parts of the country, which has an impact on what the hon. Gentleman has said.

To continue discussing space, the size of the rooms also needs to be considered, but the rules specifically rule that out. A typical tenancy agreement may describe the bedrooms as “two plus one plus one”—in other words, one double bedroom and two single bedrooms. The single bedrooms are described as single for a reason—they are often very, very small, as I have seen for myself. Yet a family comprising, for example, a couple and two boys under 16 would be considered as under-occupying that type of property. The rules encourage that family to move to a two-bedroom property, which may itself be described as “two plus one” and where they would effectively be in breach of the tenancy. Surely, size of rooms needs to be taken into account when determining whether there is under-occupancy. I ask the Minister to reconsider the rules.

Of course, the family that I have just spoken about might not be able to find a such a property. In many areas, there is a shortage of suitable housing into which tenants can downsize, which is a serious problem, and it is probably the most significant reason why disabled people are by far the most likely to be affected by the changes to the housing benefit rules, given that, as the impact assessment stated, disabled people will tend to be in smaller households. There is nothing that disabled people, or indeed anyone else who is affected, can do about that situation. They cannot move into properties that do not exist.

Anas Sarwar (Glasgow Central) (Lab): I congratulate the hon. Gentleman on securing this important debate. Obviously, this is a massive issue for disabled families, but more widely there are 660,000 people on housing benefit who are likely to be affected by the changes, mostly those who are living in two or three-bedroom properties who will need to move to a one-bedroom property; they will be penalised, by an average of £728. Does he think it is fair that those people will be penalised in such a way when there is such a shortage of one-bedroom properties?

Jeremy Lefroy: It is a very difficult situation. I fully understand the Government’s need to get to grips with the housing benefit bill, and I will come on to that issue in a moment. I know that my right hon. Friend the Secretary of State for Work and Pensions considers these matters extremely carefully, and I have had personal discussions with him about them. I agree that there is a need to try to free up the larger housing stock for those people who are over-occupying properties—people who are overcrowded; I also have constituents coming to me with that problem. However, I agree with the hon. Gentleman that there is a problem of the kind he describes.

Will the Minister say whether, in allocating DHPs between councils, any allowance has been made for those areas in which there is short supply of the one-bedroom housing that is most suited to disabled people who are living on their own or as couples without the need for a carer? If no such allowance has been made, that needs to be taken into consideration, at least for a while, until councils or housing associations have been able to provide such one-bedroom properties.

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Two of the reasons for introducing the rules are to encourage greater mobility within the social rented sector and to make better use of the housing sector stock. Those are important reasons at a time when families are struggling in overcrowded accommodation—a situation I am sure that all Members know of from their surgeries. The problem is in the application for existing tenants who are affected by the changes, two thirds of whom, as we have seen, are disabled. It is difficult to see the purpose in encouraging a family with, say, two girls, one of whom will be 16 in a year or two, to move away—even if they can find a smaller property—only for them to need to move back into a larger property when the under-occupancy deduction no longer applies.

If family incomes were such that an additional £12 or so a week was affordable, there would be no cause for concern, but for families in which one person is disabled, income is more than likely to be limited, and the need for a discretionary housing payment therefore grows. It is to deal with such cases that I encourage the Minister to increase the additional funding for discretionary housing payments. If £25 million is set aside to offset the reduction in housing benefit for disabled people whose homes have been adapted—that sum may in itself be insufficient—there will be little left for other difficult situations.

On another matter, a constituent visited me two weekends ago to put the case of fathers who live apart from the mother of their children but look after the children for, say, three nights a week. The bedroom they have kept for their children is considered spare, and hence subject to the reduction in housing benefit. I do not believe that a bedroom that is occupied by one’s children for almost half the week can be described as spare. The fathers therefore face a choice between paying the weekly amount while trying to live on jobseeker’s allowance or employment and support allowance, and going into debt—those are their own words—or not having their children to stay. They all say they will do the former—go into debt—rather than not have the children to stay. I do not believe it was the original intention of the changes to force them into such a choice. We must not put obstacles in the way of fathers remaining in touch with their children. I ask the Minister to look again at the rule that does not count a bedroom used by children for two or three nights a week as part of the occupancy of the home.

The housing benefit bill rose from £11 billion in 2000-01 to £21 billion in 2010-11. Even in real terms, that is an increase of £6 billion a year. I fully appreciate the need to get a grip on this, but ultimately it is growth in the economy, improving incomes and a massive programme of building social and affordable homes, which I hope all Members will support, that will bring that bill down. In the meantime, I ask the Minister seriously to consider changing the rules as I have proposed in respect of children of parents living apart, and the minimum size of rooms that are expected to accommodate more than one child. I also ask that the Government ensure that the statement by my right hon. Friend the Member for Basingstoke when she was Minister for disabled people about there being “clear support” for disabled people to have the rooms they require is properly implemented.

At the same time, I ask the Minister to consider making an additional amount available to local councils’ DHP funds. That will give councils the opportunity to

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assist those whom the additional £12 or so a week, which they cannot avoid because of the lack of suitable properties to move into, takes over a tipping point at which their finances become unmanageable, potentially leading them toward eviction and homelessness.

11.13 am

The Parliamentary Under-Secretary of State for Work and Pensions (Esther McVey): It is a pleasure to take part in a debate on such an important issue, and I congratulate my hon. Friend the Member for Stafford (Jeremy Lefroy) on securing it. It is also a pleasure to serve under your chairmanship, Mr Caton. I believe that it is the first time that I have done so.

As we have heard, there is considerable interest among hon. Members in all parts of the House in housing benefit and how the benefits system supports disabled people, and it is important that we make time to discuss those issues in detail. Before I address some of the specific issues that have been raised, I will set out the Government’s approach to housing provision for disabled people.

As hon. Members will be aware, the Government are in the process of reforming the welfare system that will result in housing benefit for working-age people being replaced by universal credit. Current housing benefit arrangements include specific provisions for disabled people that mirror those for other means-tested benefits. They include, for example, a range of disability premiums, earnings disregards and permitted-work rules. With universal credit, we are simplifying the current arrangements to ensure that disabled people benefit from improved work incentives and a smoother transition into work.

My hon. Friend is right to point out that the cost of housing benefit has increased by about 50% in real terms over the past decade, with expenditure totalling £23 billion in 2011-12. That is simply unaffordable in the current economic climate. To begin to address it, the emergency Budget in June 2010 introduced a series of reforms to housing benefit paid to claimants in both the private and social rented sectors. Starting in April 2011, and finishing last month, we set up a series of reforms to local housing allowance, which is the basis for housing benefit awards made to people renting in the private sector. Those changes are intended to exert downward pressure on rents and introduce fairness into the system—for example, by setting caps on the benefit that is paid to ensure that the benefit system is not funding accommodation that many hard-working families could not afford.

Disabled people are not exempt from the reforms, but steps have been taken to provide some additional support to minimise potential adverse impacts on them. My hon. Friend mentioned the number of people affected by the social sector size criteria who are disabled. It is important to stress, however, that that reflects the general proportion of disabled people living in social sector housing overall. In answer to his question, I can confirm to my hon. Friend that the criteria allow for an extra room where a household has an overnight carer.

I am pleased to hear that Stafford borough council and South Staffordshire district council have been working proactively with tenants to identify, for example, where there may be scope for a mutual exchange. I have had other reports in the Department for Work and Pensions

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of such direct engagement with tenants. I must stress that many other options may be open to people, including those that they arrive at privately to deal with their own circumstances. Things that people can do—and are already doing—include moving somewhere smaller, finding the extra money required, or taking in a lodger. We are now waiving the income tax on that up to £4,250 a year. No tax would be payable on that sum. It is important to note that the private sector may have a supply of different sized properties and that people could move out of the social and into the private sector. When properties without the right number of bedrooms are not available in the social sector, they might be available in the private sector.

Anas Sarwar: Is the Minister seriously suggesting that people who are among the poorest and most vulnerable in our communities will be able to find £728, on average, from their annual income, to make up for the deficit in the housing benefit that they will get?

Esther McVey: I am not being specific about what people should or should not do. I am saying that there is an array of options, from which someone will find their best solution. The hon. Gentleman will, like me, have met people at surgeries who have said that they have come together as a family to work on the best solution for everyone. It is not a question of one person in isolation but the whole family. Many options are available. As we have said, we are living in tough financial times. What I am talking about is not something that we can take on board easily. We must just consider the fact that there are 1 million spare bedrooms in the current housing situation, but that 250,000 families live in overcrowded houses. We must ask what we can do to support those people.

Anas Sarwar: Will the Minister give way?

Esther McVey: I will proceed a bit further, and then if the hon. Gentleman wants to ask a further question he can.

There are always specific cases where the options in question may not be sensible or appropriate, and that is why we have trebled funding—a considerable amount—for discretionary housing payments, to give local authorities more flexibility to help people affected by the changes. Overall discretionary housing payment funding in 2013-14 will total £155 million. The funding has been allocated to support the bedding in of specific reforms, but we have listened to feedback from local authorities and as a result have built in flexibility that will allow authorities to allocate funding based on local needs. That flexibility includes, for example, helping disabled people who have made adaptations to their homes to remain in them, as was mentioned by my hon. Friend.

As I have said, there will be provision for those disabled people who need overnight, non-residential carers to receive additional payments for an extra bedroom. The hon. Gentleman pointed out that we are giving many types of support. The trebling of the discretionary benefit really does go to support the people most in need.

Anas Sarwar: On flexibility, is the Minister open to the idea of introducing a safeguard for people who cannot reasonably move to another local property because

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of the lack of availability and of sanctioning them only if they refuse a reasonable request? Is she open to that safeguard?

Esther McVey: The hon. Gentleman is speaking hypothetically. We have put in extra discretionary funds, because local councils will know exactly who those individuals are. We have put in extra money, and we have said that it is possible to move between the social and private sectors. With all the options that we have put in place, we believe that we will find solutions for all cases.

Jeremy Lefroy: I am grateful to the Minister for her answers. Will she give us some assurance that the additional discretionary funding, which we need to look at again to see whether it is adequate, will be continued through 2014-15 and 2015-16? Often the adaptations are such that it is not possible for a disabled person to move property in the next year or two. One of my constituents has adaptations worth some £30,000. It does not make any sense for them to move from their property.

Esther McVey: My hon. Friend makes a good point, and I will come on to that a little bit later and explain in detail what we are doing. He will also appreciate that I cannot make spending commitments into the next Parliament. None the less, with regard to the discretionary housing payment, the Government are committed to ensuring that the reforms are well implemented. We are working closely with local authorities and the Local Government Association regarding this payment usage. As part of the review of these reforms, we are taking ongoing feedback, and I will be pleased to pass on the points raised here today and any further evidence that emerges as the reforms are rolled out. We will continue to monitor and evaluate the impact of the changes.

I should like to put it on the record that a lot of the negative impacts that people talked about last year, such as an explosion of homelessness and mass migration, have simply not emerged. We all want to ensure that there is a smooth transition and that the change is affordable. Of course we are using common sense. My hon. Friend talks about expensive modifications. We know that we have to take that into account, which is precisely why we have trebled the discretionary fund.

We have also made arguments for exempting certain categories from the social sector size criteria measure. However, we do not believe that blanket exemptions are the most effective and affordable approach to targeting resources, because they do not take into account local knowledge. We have therefore avoided exemptions where possible and favoured the discretionary housing payment, because local decision makers are best placed to make decisions based on individual circumstances.

Ian Lucas: The Minister is being generous in giving way. Can she foresee circumstances in which someone who requires an overnight carer is not allowed an extra room within the housing benefit provisions?

Esther McVey: That is precisely why we are monitoring and evaluating the scheme, and we will continue to do so for two years to see what extra support might be needed. Of course we are watching and observing what is going on. [Interruption.] I will complete my comments

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here. However, we are committed to undertaking the independent evaluation of all housing reforms. The first report on the private sector is due to be published later this year, and work on evaluating the social sector changes will be implemented in April, with initial findings being available next year.

I trust that I have answered many of the questions that have been raised today. On other specific matters, I will get back to my hon. Friend. As I have already said, this is an important debate, and it is crucial that we closely monitor the situation. We are considering the most vulnerable people in society, and we have a commitment to them.

John McDonnell: I do not want the Minister to sit down thinking that there is no housing crisis out there. She referred to the predictions on housing benefit not coming true, but they have in my constituency. I have the worst housing crisis since the second world war. Nevertheless, she has mentioned monitoring, which is critical. Will she give an assurance that that monitoring will be published regularly, so that the House can receive and debate it? The points raised by the hon. Member for Stafford (Jeremy Lefroy) are critical. We must see what is happening on the ground, because a number of local authorities might want to work with Government to plan a transition over time. There will be a number of families for whom alternative private accommodation or social housing is not available and might not be available for years. An assurance that the monitoring will be published and that we will be able to debate it in the House would be helpful.

Esther McVey: The hon. Gentleman makes a good point. Of course, we have to monitor the situation, and I have confirmation from colleagues that the monitoring

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and evaluation will be made public. At the moment, there is much speculation about what might happen, but that is hypothetical. We do not know about that, but by monitoring closely, by introducing a discretionary fund and by working in a common-sense way with people on the ground who know best about local needs, we can get this right.

Jeremy Lefroy: I welcome the Minister’s commitment to monitoring, which is important. Will she say a few words about fathers who, unfortunately, are separated from the mothers of their children and who are not allowed to count the presence of their children in their home for up to three nights a week as part of the occupancy of that home? That is an important point. She and I, and I think all hon. Members present, feel that it is important for children to have regular access to both their parents—in this case, to their fathers.

Esther McVey: Again, my hon. Friend asks a key question. The heart of the matter is that we do not want children to suffer. Children must have what is right for them, but where a tenant has non-residential children, housing benefit may already pay for a room for the child or children in the place where they usually reside. Funding an additional room in both parents’ properties could be a double provision, but discretionary payments are the best way to address specific complex cases, which we are talking about here.

I am glad that all those points have been highlighted, and they will all be closely monitored. I thank my hon. Friend for bringing such an important debate to the House.

11.28 am

Sitting suspended.

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Housing Benefit Entitlement

[Hugh Bayley in the Chair]

2.30 pm

Phil Wilson (Sedgefield) (Lab): It is a pleasure to see you in the Chair this afternoon, Mr Bayley. I wanted to select the rules on the under-occupancy of social housing and housing benefit entitlement, which start this April, for this debate today because the Government’s proposal is divisive legislation. In fact, it is not only divisive but arbitrary, spiteful and deeply cynical. It has been devised either by those who have no understanding, knowledge or experience of social housing and do not care, or by those who have understanding, knowledge and experience of social housing and should know better.

The under-occupancy rules say all that anyone needs to know about this Government—tax cuts for the rich and a bedroom tax for the poor. The bedroom tax is being created by a mindset that believes only those who own their own homes can live in a community and those who rent with Government support, even though many of them are in work, are deemed to be a burden on that community and not entitled to, or deserving of a home and that they should be moved at the behest of others and not themselves.

What do the under-occupancy rules mean for social housing and council tenants? If a household rents from a social landlord and is in receipt of housing benefit, and it is deemed to have one spare bedroom, the property is seen to be under-occupied. The tenant’s housing benefit is reduced by 14% for one bedroom and by 25% for two bedrooms. It has been estimated that about 660,000 tenants will lose an average of £728 a year, starting from April.

Mr Kevan Jones (North Durham) (Lab): Does my hon. Friend agree that these proposals will also affect those who are in work? I had a constituent in my surgery a couple of Saturdays ago who had been made unemployed. He had gone out and got a part-time job in a filling station. His wife is a local carer as well, and because they live in a three-bedroom house—they have lived there for 30 years—and their family have left, they will be affected by the bedroom tax. Is that fair for striving people like that?

Phil Wilson: It is obviously not fair, but the bedroom tax is hitting people whether or not they are in work. This regulation is just plain wrong. The reality is that if a married couple have lived in a three-bedroom house for many years and had two children who have grown up and left home, the two children’s bedrooms are now deemed to be spare. The house is seen as under-occupied and the couple’s housing benefit entitlement is cut accordingly.

Julie Elliott (Sunderland Central) (Lab): The biggest social landlord in my city of Sunderland, Gentoo, has informed people who will be affected by this change, and even if those people are saying, “We’re happy to move to smaller premises,” there simply are not the smaller premises to move to. Is that fair?

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Phil Wilson: That is a very good point, and it is something that I will come on to later in my speech.

As I was saying, a married couple with a three-bedroom house, which they have lived in for a long time, will need to top up their rent from another source if they want to stay in the home and obviously, since the family is receiving housing benefit, any sources of additional income are extremely limited. That is something that this cynical Government are fully aware of.

Meg Hillier (Hackney South and Shoreditch) (Lab/Co-op): In my constituency, which is very young, there are a number of families who have two children of the same gender living in a three-bedroom property. Under the new rules, they would only qualify for a two-bedroom property. What would my hon. Friend’s advice be to them? Or perhaps I should ask what the Minister’s advice would be to a family who have a 15-year-old boy and a 12-year-old boy, with the 15-year-old about to turn 16 in a few months’ time, but in the meantime—from April onwards—the family will have to find that extra rent. Will that drive the family into the hands of moneylenders, or do the Government have a plan?

Phil Wilson: We should wait until the Minister responds to the debate to find out exactly what the Government propose for that situation, but I do not think that it will be very much really.

Basically, the hypothetical family who I am talking about could be forced to leave the family home, and that is exactly what it is—a family home, not just a house. They will have no space for their grandchildren, who will not be able to stay with their grandparents. For families who are forced to downsize because of the cuts in housing benefit and who are in need of a one-bedroom property, the National Housing Federation has found that, although approximately 180,000 social tenants are under-occupying two-bedroom homes, less than 85,000 one-bedroom social homes are available.

Jonathan Reynolds (Stalybridge and Hyde) (Lab/Co-op): I am grateful to my hon. Friend for giving way; he will have a few applications to intervene on him, given the interest in the debate. I completely agree with his analysis of the general impact of the proposal, but will he say something about the complete lack of any exemption? Foster carers, who are doing everything they can for society, will be hit by the proposal between placements. It is absolutely unconscionable. Surely, this cannot be the way for the Government to proceed.

Phil Wilson: My hon. Friend is absolutely right, and I will come on to foster carers in a little while.

The lack of mobility in this sector—between two-bedroom properties and one-bedroom properties, for example—is a product not of tenants needlessly under-occupying larger homes, but of the logjam created by a national shortage of affordable homes, particularly two and one-bedroom properties.

Dame Anne Begg (Aberdeen South) (Lab): I spoke to the Glasgow Housing Association last week, which is the largest provider of social housing anywhere in the UK. It reckons that the shortfall that it will face could mean that 700 houses that it would have built each year will now not be built. So, rather than helping with the housing shortage, the proposal is making things worse.

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Phil Wilson: That is another good point. I will come on to discuss that situation, which is also affecting my own local social housing providers in County Durham.

I understand that the Department for Work and Pensions has recognised the lack of available smaller properties. In its impact assessment, it notes that there is a mismatch between household size and the availability of suitable homes in the social sector for under-occupying claimants to downsize. I will now look at how that will affect County Durham, especially my constituents in Sedgefield.

Nic Dakin (Scunthorpe) (Lab): I congratulate my hon. Friend on securing this important debate. In north Lincolnshire, North Lincolnshire Homes—the social housing provider—has 1,500 people who are deemed to be under-occupying properties and only 40 single-bedroom properties become available every year. People in huge distress are coming to see us about this matter, and it is very distressing.

Phil Wilson: It is very distressing, and the point that my hon. Friend raises again about the lack of one-bedroom properties will be starkly set out in the next part of my speech.

Livin, which used to be called Sedgefield Borough Homes, has about 8,500 properties, and about 1,609 of those households will be affected by the bedroom tax: 1,365 households are under-occupied by one bedroom and the remainder are under-occupied by two bedrooms. Livin only has 204 available one-bedroom properties. East Durham Homes—another housing association, which covers the communities of Wingate, Wheatley Hill, Thornley and Deaf Hill in my constituency—has said that it would take seven years for it to re-house all the tenants affected by the bedroom tax. For Livin, the period required to re-house affected tenants would be much longer. Both East Durham Homes and Livin estimate that the bedroom tax would mean that the 2,977 of their households that would be affected would have to find almost £1.8 million from elsewhere to go towards paying the rent on their existing homes, or the people in those households would have to go into arrears or move out, but there are not enough one-bedroom properties.

Helen Goodman (Bishop Auckland) (Lab): My constituency, which is a neighbouring constituency to that of my hon. Friend, is similarly affected. There is another housing association in my constituency, Dale and Valley Homes, and there are a further 875 people affected in this way. Some of those individuals are being pushed to live on as little as £23 a week. Does he not think that that is utterly disgraceful?

Phil Wilson: At the beginning of the 21st century, it obviously is. Bishop Auckland, the constituency that my hon. Friend represents, shares some of the statistics regarding Livin, because it covers both our constituencies, and it is concerned because of the proposal that its rent arrears could double from 4% to 8% in the future. In a briefing note prepared by Livin, it said:

“Rent arrears will increase, affecting cash flow, which could mean that the loan facility made available to Livin for improvements and development of the housing stock may be required to fund administration. This could only be considered as a temporary

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position and Livin would need to readjust its spending to avoid borrowing for ongoing day to day costs.”

I said earlier that the impact of these new rules would be arbitrary on families and communities. Here are a couple of examples. The DWP’s equality impact assessment shows that 66% of claimants who will be affected by the bedroom tax are disabled. Although recipients of disability living allowance are exempt from the overall benefit cap, the DWP has chosen not to exempt them from the bedroom tax.

Kate Green (Stretford and Urmston) (Lab): I am grateful to my hon. Friend for mentioning disabled people. He may be aware that Ministers have made much of access to discretionary housing payments for disabled people. Indeed, Ministers have implied that the money has been allocated specifically to meet the needs of disabled people. But, of course, the money is temporary and limited, and the discretion of local authorities whether to pay only to disabled people cannot be fettered. Is it not totally misleading to imply that discretionary housing payments will in any way compensate for what has been lost?

Phil Wilson: My hon. Friend is absolutely right. I will address that in my speech, which many hon. Members seem to have read. The Minister will probably say that that budget is being increased, but it is not ring-fenced.

A man came into my constituency office. He is divorced, and he cares for his children for part of the week. He receives housing benefit and lives in a two-bedroom house. The children’s mother, however, is deemed to be the main carer, so his housing benefit will be docked by 14%. He will need to move into a one-bedroom property, if he can find one. His main problem is that, if he moves into a one-bedroom house, how will he look after his children for part of the week?

Jonathan Ashworth (Leicester South) (Lab): Is it not extraordinary that no Conservative Members are here, other than the Parliamentary Private Secretary, to defend the policy?

A couple came to my constituency office, and they live in a specially adapted bungalow. The wife has to have morphine through the evening, so the husband has to sleep in another room. Under the proposals, they will have to move out of that specially adapted bungalow, all because some politicians want to say that they are getting tough on scroungers. That is not about fairness; it is about cheap, nasty politics.

Phil Wilson: My hon. Friend makes an excellent point with which I do not think any Opposition Member would disagree.

The gentleman who came into my constituency office is an example that exposes the modern Conservative party and, indeed, the coalition. Conservatives like to see themselves as the party of the family, but they are not the party of poor people who need support to keep their family together.

To address those issues, the Government have offered additional discretionary housing payments to help people with disabilities remain in properties adapted for their needs. As those payments are often limited to just a few months, however, they are not a viable long-term solution, because they fail to give people with disabilities the

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assurance that their housing needs are secure. Also, the payments are made from budget-limited discretionary funds. The payment budget distributed by local authorities will come under significant pressure, following major cuts to local housing allowance for private sector tenants, and local authorities might choose to prioritise those who are at risk of homelessness, rather than social tenants with disabilities.

The Fostering Network—the voice of foster carers throughout the country—successfully campaigned for a £5 million addition to the discretionary housing fund to compensate foster carers who may have their housing benefit cut from April. The network is hearing from foster carers who have received under-occupancy letters. Some housing departments either do not know about the fund or will not use the money for foster carers. The network reports that 9,000 foster families are needed to meet the foster carer shortfall in 2013. There is already a recruitment crisis, and the network is concerned that the situation will worsen as a result of housing benefit reform.

The Minister will no doubt say that the under-occupancy rules will bring the social housing sector into line with the private sector, but the new rules are retrospective and penalise people who brought up their families in a council house in which they may have lived for years—the average tenancy for social housing is some seven years. The bedroom tax penalises couples who have done the right thing and who over the years may have spent their own money on decorating and maintaining the property. The property is not theirs to keep, but they have respect for what is their home anyway.

No doubt the Minister will also say that the change is required to help to pay off the deficit, because the Government expect the bedroom tax to save £450 million to £500 million. The Government’s plans are spiteful and cynical, because the only way that the £500 million will be saved is if those who live in under-occupied properties cut their standard of living still further by trying to remain in their home, by not downsizing and by paying the additional rent. The Government are trying to get tenants to pay their own housing benefit out of money that they do not have.

Mr Kevan Jones: My hon. Friend’s constituency, like mine, is a recruitment area for the British armed forces. Is he aware of the case raised by my hon. Friend the Member for Middlesbrough South and East Cleveland (Tom Blenkinsop)? A mother, whose son has joined the armed forces and is fighting in Afghanistan, will be hit by the tax because her son is not at home and she has an extra bedroom. Is that fair from a Government who say they are standing up for our armed forces?

Phil Wilson: That is not the way to treat the armed forces, especially when they are on active service in Afghanistan and elsewhere.

The Government say that they are trying to save money, but that is impossible for the great majority, who will be forced to choose between their home and a basic standard of living. There is a shortage of one-bedroom properties. If people choose to move into the private sector, rents and housing benefit claims might be higher. The changes hit right across the board, including members

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of the armed forces, the disabled, the vulnerable and sick people who sometimes, but not always, need a carer.

Meg Hillier: In my constituency, private sector rents are so much higher than in the social rented sector that moving is not an option for people in such circumstances. Does my hon. Friend agree that in my constituency, and I am sure in other constituencies too, many people do not understand that the change will happen from 1 April, or from when their tenancy renews? Does he foresee a big social problem arising from the Government’s lack of ability to communicate this invidious policy?

Phil Wilson: My hon. Friend makes a valid point. As MPs, we are seeing a great increase in benefit casework. As we get closer to 1 April, the casework will get even harder.

The under-occupancy rules are the manifestation of the Government’s appalling manipulation of the welfare debate. The language is the same old narrative that we have had down the ages: to secure their own position, the Tories pit one section of the community against the other. Once, it was the deserving poor and the undeserving poor; now it is strivers versus shirkers.

This legislation is unbecoming of a civilised society: it is born of ignorance and raised by prejudice. What is deserving of a civilised society is a new house-building programme, decent jobs, a growing economy and one nation in which we truly are all in it together. The legislation is wrong and should be repealed at the earliest opportunity.

Hugh Bayley (in the Chair): I intend to start the wind-ups at 3.40 pm, which gives us 53 minutes or so. Eleven Members are on my list as seeking to speak, so I will impose a time limit of five minutes to begin with. I warn Members that that might leave some of them at the end with slightly less than five minutes, and if there are interventions even less still.

2.47 pm

Yvonne Fovargue (Makerfield) (Lab): I congratulate my hon. Friend the Member for Sedgefield (Phil Wilson) on securing this important debate.

This policy, more than any other, except perhaps direct payment, will have a major impact on local housing associations and social housing providers. Wigan and Leigh Housing manages 22,600 properties, and 68% of our tenants are on housing benefit. Of those properties, 4,571 are under-occupied and in receipt of housing benefit. Nearly £3 million in housing benefit payments will be lost to that social housing provider, and our shortfall is in one-bedroom and two-bedroom accommodation. For example, our one-bedroom stock is 5,591. In 2011-12, 852 properties were void, and demand for those properties was 2,089 people. We simply cannot re-house people in one-bedroom properties.

If, as predicted by the Cambridge Centre for Housing and Planning Research study, 32% wish to downsize and move to the private sector, that will not offer any savings. In fact, more will be paid for a two-bedroom property in the private sector in Wigan than is paid for a three-bedroom property in the social sector. We have an oversupply of three-bedroom properties. The cumulative

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effect of the council tax changes will be some £3.50 a week for exactly the same group of people. The study estimates that 26% of tenants will not be able to pay the under-occupancy charge. If 42%, as estimated by the study, do not pay, the ultimate sanction will be eviction.

Has the Minister tested the courts’ view of a tenant who has requested a move, for whom no property is available and who cannot pay? What will be the courts’ opinion? If such people are evicted, based on an average eviction cost of £6,852 per person, my local social housing provider will lose £13.1 million. That £13.1 million will not be spent on building houses, repaying debt or improving stock for tenants. Wigan has done some modelling and made some assumptions about what will happen if the under-occupancy tax goes through as planned, and the change will cost the Department for Work and Pensions £229,000 per annum and, as I said, the authority a possible £30 million in eviction costs. There is no saving for the Department—it is not a policy aimed to save money.

Moreover, as my hon. Friend the Member for Sedgefield mentioned, the reassurances about the discretionary housing payments will certainly not meet people’s shortfall. The total budget for Wigan is £456,000, which will assist with only 15% of the charge. If the amendment proposed by Lord Best was agreed—a penalty only for under-occupation by two bedrooms or more—the situation in Wigan would be mitigated somewhat and the DWP savings would be delivered. In Wigan, if one bedroom could be under-occupied, the savings to the DWP would be £371,000 and the scheme would reduce the number of tenants affected to about 1,000, potential bad debt to £249,000 and eviction costs to close to £3 million. That is not a great policy, and it would pass central savings to the local budget, but it would be more manageable in areas such as Wigan.

What modelling has been made for areas such as Wigan of that amendment and the increased savings for the DWP? Has all the modelling been London-centric? Will the Minister consider looking at Wigan and other areas in the north and north-west, where there is a shortage of smaller housing, to mitigate at least the effect on communities and tenants?

The under-occupation tax is trying to solve a problem that simply does not exist in my area and other such areas. In doing so, it is creating massive problems for individuals, social landlords and communities.

2.52 pm

Lisa Nandy (Wigan) (Lab): I am losing my voice, as you can probably tell, Mr Bayley, but I was so upset and incensed by the proposals that I am doing my best to speak on behalf of the 4,000 Wigan households that will be affected from April. Collectively, those households will have to find nearly £55,000 a week in extra rent. I am clear that the vast majority will not be able to manage, so they will have to downsize. As we have just heard, however, we have a problem: we do not have one and two-bedroom properties available. The demand for them already far outstrips demand for other properties; for example, 62 households are waiting for four-bedroom homes and 2,000 for one-bedroom flats.

Put simply, downsizing is not an option, so tenants will be forced into the private sector, where rents are between £20 and £40 a month higher. If only half of

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tenants make that move and claim the local housing allowance, the Department for Work and Pensions will not save a single penny, but those families will have had their lives disrupted, leaving the homes that they have grown up in and with children forced to move schools and childhoods destroyed.

I have little doubt that Ministers are aware of such implications of the policy. Last year, I wrote to the then Minister to ask whether a constituent would be expected to move in April—his mother had recently died from cancer, leaving him under-occupying, and he is now suffering from terminal cancer himself. The Minister did not give me a commitment that my constituent, a man with only up to two years to live, would not have to move. The policy, to use the words of my hon. Friend the Member for Sedgefield (Phil Wilson), is one of the most spiteful and callous that I have ever seen enacted by a Government.

In Wigan, it is not clear whether people will be able to find homes in the private sector, because larger properties make up 75% of the stock. It will take 33 years, at current building rates, for private and social housing collectively to meet needs. The situation is unclear, but if those people simply cannot afford to live in their properties, they may well have grounds for being re-housed as unintentionally homeless. Can the Minister tell me where he expects a housing authority such as mine, without access to smaller properties, to put those people? How on earth can creating this unnecessary, callous revolving door of homelessness, destroying people’s lives in the process, possibly be a moral policy to pursue?

Finally, I want to make a specific point about foster children, to which my hon. Friend alluded. It is absolutely scandalous and a damning indictment of the Government’s lack of commitment to the most vulnerable children that, apparently, no thought at all was given to foster children when the policy was devised. Foster children simply do not count—they are invisible—for the purposes of the policy and the purposes of a spare room. The money that has since been made available through a discretionary fund, as my hon. Friend said, is not widely known about among foster carers or local authorities. Furthermore, that pot amounts to only £100 per child, which is woefully inadequate for the foster children already in the system, let alone for the many more whom the Minister’s colleagues in the Department for Education are rightly seeking to place.

We have a huge shortage of foster carers in this country, and the situation for children waiting in the care system must be urgently rectified. Where is the thought given to those children, or the commitment from their Government? Why did the Government overlook those children in the first place? Why do those children simply not count? Why has so little money been made available? Despite concerns expressed by the Under-Secretary of State for Education, the hon. Member for Crewe and Nantwich (Mr Timpson), why has the policy not been reversed? Why was the money for such children not ring-fenced? It might not even be used to help their situation. Can the Minister, if he will not reverse such appalling regulations, at least commit to amending them, so that they do not make the situation worse for some of the most disadvantaged children in this country?

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2.56 pm

Rosie Cooper (West Lancashire) (Lab): It is a pleasure to serve under your chairmanship today, Mr Bayley. I congratulate my hon. Friend the Member for Sedgefield (Phil Wilson) on securing the debate, which gives Members the opportunity to highlight the abject failure and inherent contradictions that lie at the heart of the Government’s housing benefit reforms. Lord Freud, in response to hon. Members’ letters, suggests that the reforms are aimed at encouraging mobility within the social rented sector, at strengthening work incentives and at making better use of social housing. My response is clear: they don’t, they won’t and they can’t.

I will highlight, through constituents’ cases, how the policy is nothing more than a crude and naked attempt to place an ever greater burden on some of the most vulnerable people in our communities by slashing budgets. I get the sense that, as an abstract idea, reducing the welfare bill by cutting housing benefit to all the supposed scroungers living in houses far bigger than they need is a policy that will press all the Government’s public relations buttons. The problem is that we are not talking about abstractions; we are talking about families, people’s homes and perhaps forcing people to choose between food, heating and paying the rent.

I have 103 families affected, and I wish to race through three examples. One such constituent is accepted by the council as unintentionally homeless. She has a five-year-old child, is pregnant and is in receipt of jobseeker’s allowance. She could be a perfect example of the type of person whom the Government are seeking to characterise, stigmatise and castigate. Yet, when the local authority comes back to her, it is with an offer of a four-bedroom property, so her housing benefit will be reduced by 25%. That constituent and her young family will go from being homeless to facing extra financial burdens. In the long term, that means increasing her debt, so she faces possible eviction by the very people who gave her the house, because she cannot pay the 25% contribution required as a result of being given a property that was too big in the first place.

West Lancashire borough council, as the housing body, is, by its allocation policy, complicit in the inappropriate letting of properties. That allocation policy perpetuates the exact problem that the Government claim that they intend to solve by reforming housing benefit. If I were being kind, I could suggest that the case highlights the fact that social landlords and councils do not have the range of housing stock to meet the challenges that the Government are setting. People are making short-term decisions to put a roof over their heads and neglecting the long-term consequences of under-occupancy. Why is my constituent left to face the consequences of a decision that will be forced on her?

My second example is that of a disabled man living in a two-bedroom property—it was a three-bedroom property, but it was adapted. His daughter is in the armed forces, so he technically has two bedrooms empty. If he moves to a smaller flat—there are none available, by the way—the council will have to pay for adaptations to be made to the new flat, while removing the adaptations from the original flat to make it available for re-letting.

Another case involves a constituent who is separated. He has his children to stay on alternate weekends and midweek. The Government say they defend families

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and put them at the core of what they do, but this policy does not show that at all. The February 2012 impact assessment says:

“savings in Housing Benefit expenditure will only be realised in full if social tenants do not seek to move from the homes they are under-occupying”.

Rather than wanting people to move, the Government would prefer them, ideally, to stay where they are and pay the increased costs, even if they do not have the money.

This policy is absolutely unfair, and that has been shown by the contributions made so far. The Government are abjectly failing to offer people the range of accommodation or the jobs that would enable them to alter their situations. I do not call it fair when the Government place greater burdens on the most vulnerable.

3.1 pm

Simon Danczuk (Rochdale) (Lab): I thank my hon. Friend the Member for Sedgefield (Phil Wilson) for securing this important debate on a critical issue. I want to talk about two families who came to see me in Rochdale, but they are just two of the many who have come to see me. I also want to speak briefly about the impact on community cohesion and the role of housing providers.

Mr Berry and his family came to see me relatively recently. After a serious accident 17 years ago, Mr Berry and his wife had no choice but to take the council home offered to them. Since then, they have brought up their two children—a boy and a girl—in the three-bedroom property. They have made modifications, and they have made the house into their home. They are very much part of the local community. However, the Government’s bedroom tax means that they will have to move out of their house. After 17 years, the family are being pulled out of the community in which they have lived for so long. That leads me to the first point I want to make.

Families who have lived for decades on council estates in places such as Rochdale are being forced to move. Homes are being taken away from people, and they will be filled by Asian or Afro-Caribbean families, because that is the nature of the demographics in places such as Rochdale. That will have a direct impact on community cohesion, and that impact should not be underestimated. It will create tensions, and there is the potential for conflict. The Government’s impact assessment on this policy took no account whatever of community cohesion. It is as though the policy has not been thought through.

Let me turn to the second family who came to see me, just before Christmas. The husband is a paraplegic. They have lived in their property for 15 years. The council has spent £18,500 adapting it. It has three bedrooms, one of which is used to accommodate a lift. The other two bedrooms are used by each of the individuals in the home. They have been visited by Rochdale Boroughwide Housing, and they have been told that they will have to pay £22 a week extra or they will have to move out. The family described that as the last straw. They have been through so much in their lives. The lady was crying in my surgery on the eve of Christmas, because of the Government’s policy.

I explained to the family the possibility of receiving temporary discretionary housing payments, but they are not enough. The Government do not seem to understand the misery that they are creating. They

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have housing providers such as RBH running around implementing their policy, which is having a devastating effect on families and communities. That leads me to my second point.

Housing providers such as RBH have an excellent track record in managing their stock. RBH has mixed communities, because it focuses on creating a balance. It takes into account people’s individual needs, and it constantly reviews under-occupancy and acts on it. The Government should leave housing providers to manage their stock; it is not for the Government to micro-manage such things.

Let me finish by making two important points. First, there is the potential for community conflict as a result of this policy. Secondly, if this is such a good Government policy, why is there not a single Conservative or Liberal Democrat Back-Bench MP here to defend it?

3.5 pm

Dr Eilidh Whiteford (Banff and Buchan) (SNP): I congratulate the hon. Member for Sedgefield (Phil Wilson) on bringing such an important issue before us. It will have huge unintended and unpredictable consequences for at least 80,000 people in Scotland, some of whom are among the most economically impoverished in our community.

The problem with the way in which the Government have sought to frame the debate on changes to the occupancy rules is that it fails to acknowledge that that debate takes place against the backdrop of changing population demographics and underlying problems in the supply of affordable housing. It is also being implemented against the backdrop of a labour market in which jobseekers far outnumber vacancies, and increasing numbers of jobs are seasonal, temporary or based on zero-hours contracts. All this talk about subsidised spare bedrooms is yet another attempt to vilify people on low incomes in a vain effort to justify their having to pay the price for the financial crisis and the double-dip recession.

To debate this issue properly, we need to acknowledge that there is a fundamental mismatch between the social housing stock available and the needs of tenants and prospective tenants. Most of our social housing stock was built at a time when families were much larger and the population was less mobile. Across Scotland, about 44% of social tenants require a one-bedroom home, but only 24% of the homes available are that size. In other words, many tenants have no choice but to live in a home that is larger than they need. An estimated 69,000 tenants in Scotland cannot currently be accommodated in a suitably sized house in the social rented sector.

In Aberdeenshire—my own patch—we have a growing population and a depleted stock of public sector housing, and there is a chronic shortage of affordable property to rent. There are more than 7,000 people on the waiting list. Many of them have little prospect of being offered a house any time soon. Although Aberdeenshire has a much higher percentage of one-bedroom properties than most local authorities, it still does not meet demand. People desperate for a house will take any house offered, whether or not it is the appropriate size.

The main issue I want to talk about is the unintended consequences of the bedroom tax on individuals, social landlords and the wider economy. It is hard to predict how tenants in receipt of housing benefit will respond

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to the cuts, bearing in mind that the real-terms cut in working-age benefits will also put the finances of most of them under considerable strain. We can probably assume that some of those who can move, will move. Some might seek to absorb the cuts within their existing finances, while some might take out loans to cover the gap between their rent and their income, which is a risky short-term strategy. It is highly unlikely that housing association tenants will mitigate the impact by taking in lodgers, because many are explicitly prevented from doing so by the terms of their tenancy agreements. We have to face the fact that some tenants will fall into arrears. When we consider the bedroom tax in tandem with the move away from direct payments to landlords and other benefit cuts, we have a recipe for significant problems with rent arrears, and a possible rise in evictions in the social and private rented sectors.

Housing associations fear that financial instability and cash-flow problems could affect their credit ratings, and I echo the point made by the Chair of the Select Committee on Work and Pensions, the hon. Member for Aberdeen South (Dame Anne Begg). Social landlords need to be able to borrow to invest in new properties and maintain their existing properties. If lenders start to see them as a higher risk, their borrowing costs will rise, which will inevitably put inflationary pressures on the rents of existing tenants and thwart the investment that is so badly needed.

The bedroom tax threatens to undermine the progress that has been made in Scotland over recent years in introducing new, affordable social housing to deal with rising demand. It is a mean and miserable measure that will cause real financial hardship to people on low incomes. It will drive people into rent arrears and into debts they will struggle to repay. It will also drive people from their homes and uproot them from their communities. Too many of the people affected by the measure are moving in and out of low-paid, insecure, temporary short-term work. Because of the bedroom tax, not only will they have no job security; they will lose housing stability as well. Coming hard on the heels of real-terms cuts in financial support for low-income households, the changes will exacerbate our existing economic malaise, by taking money out of the very communities that need it most. They will make it more difficult for non-governmental actors to invest in quality, affordable housing.

I urge Ministers to think again and to look at the Benches that are empty of people prepared to defend the policy. If Ministers are devoid of empathy, I encourage them to take a hard-headed look at the unintended economic impact of the bedroom tax, and to consider the unacceptable social costs.

3.10 pm

Ann Coffey (Stockport) (Lab): It is a pleasure to serve under your chairmanship, Mr Bayley. I congratulate my hon. Friend the Member for Sedgefield (Phil Wilson) on obtaining this important and well supported debate.

I quite understand that at a time of housing shortage it is important, particularly in Stockport, which has more than 7,000 people on the social housing waiting list, to ensure that people have the appropriate housing and to address issues of under-occupancy. My problem with the policy is the way it is being implemented, and

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the lack of local flexibility for the families and individuals who, through no fault of their own, will be disproportionately affected. It is always a problem with blanket policy changes. No central edict can take account of people’s varying individual circumstances, and inevitably the result will be that some will be put in desperate circumstances.

I will give only one example. I have a constituent who lives in a two-bedroom flat and who receives housing benefit. He is under the care of Manchester royal infirmary renal team, and is about to start dialysis at home, while awaiting a kidney transplant. He needs the extra room for the dialysis machine and to store fluids. He told me: