Off-patent Drugs Bill
Nick Thomas-Symonds Excerpts(9 years, 1 month ago)
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Nick Thomas-Symonds (Torfaen) (Lab)
I beg to move, That the Bill be now read a Second time.
It is an honour to be drawn in the ballot and to bring forward a private Member’s Bill on such a key issue. My grandmother, who inspired me to go into politics, died of breast cancer, and it is poignant for me that this Second Reading debate takes place in the week that would have been her birthday.
I am grateful to those who have sponsored this Bill, and to Members from across the House who have supported it. I thank the former hon. Member for Cardiff North, Jonathan Evans, whose Off-patent Drugs Bill was debated last year, and his successor, the hon. Member for Cardiff North (Craig Williams), for his support for this slightly refined version of the Bill. I thank my constituents for all their support, and I also thank Jenny Goodare from Breast Cancer Now for her help in preparing the Bill.
The Bill is a UK-wide Bill that creates a duty on the Government to make cheap drugs available when pharmaceutical companies have no incentive to do so. There is a problem: if a drug is shown to be useful for a new purpose after its original patent has expired, there is no financial incentive for a pharmaceutical company to sponsor that off-patent treatment through the processes that are normally used to licence it, and to ensure its adoption on the NHS.
Such off-patent treatments are usually available at low cost, but the current system is not set up to make them routinely available when they have been repurposed. Put simply, without a licence to act as a kitemark of safety, and a cost-effectiveness appraisal to give the NHS a mandate to provide it, there are multiple disincentives to treatments being prescribed, meaning that they are not routinely made available.
I have a letter from a clinician dated 15 October 2015 that I have permission to read out—the personal details have been redacted. He says he was contacted by a lady because she was advised that she had a high risk of breast cancer, and that raloxifene, which is an example of a drug that would benefit from the Bill, could be prescribed to help to prevent it. The key passage in the letter states:
“Unfortunately, I am unable to prescribe this as it is not licensed with this indication.”
[Interruption.] The Minister shakes his head, but I am quoting directly from a letter written by a clinician only in the past few weeks. That affects real people and has had a great impact on somebody’s life.
The Bill proposes a Government responsibility to step in and address that market failure in the public interest. Part 1 of the Bill introduces the duty of the Secretary of State to seek licences for off-patent drugs in new indications. The idea is to make those cheap, off-patent drugs routinely available. The president of the Royal College of Surgeons of Edinburgh recently said that, at the moment, there is significant variation, leading to variation of access across the UK.
There are barriers to the drugs being regularly available. Lack of awareness is a problem, but it is not all about that. General Medical Council guidance states that licensed treatment should be considered before an off-label or unlicensed treatment. In addition, GMC guidance is clear that a doctor takes on an extra level of personal liability when prescribing off-label.
Carolyn Harris (Swansea East) (Lab)
A Government spokesman was quoted in The Independent this week saying that the only thing general practitioners need is more information. Does my hon. Friend agree that that was both unhelpful and ill-informed? Deluging GPs with yet more information is certainly not productive.
Nick Thomas-Symonds
My point is precisely that it is about more than information.
A licence for off-patent drugs would make a big difference. The all-party parliamentary group on off-patent drugs, which I chair, met on 15 October and took evidence from experts across the board. Pan Pantziarka, a repurposing specialist, said that granting a new licence triggers a “whole cascade of things”: the British National Formulary gets updated, clinical commissioning groups and specialist bodies take note, and guidance is updated. He said that, without that, we are dependent on doctors reading the literature and prescribing off-label, and that that is not the solution we want.
Sir John Burn, professor of clinical genetics and a non-executive director of NHS England told our inquiry:
“The other problem is making decisions in a short time scale—we haven’t got time to look at the bundle of evidence presented. The whole point of the licensing process is to distil that for the physician”
Anne Marie Morris (Newton Abbot) (Con)
Will the hon. Gentleman clarify something for me? Under his proposed scheme, when a drug gets relicensed, what will the impact be on pricing? When a drug goes off-patent, one benefit is that it effectively becomes cheaper because any company can manufacture it, which is clearly a benefit for the NHS. With relicensing, is there a risk that the company will effectively re-price, landing the NHS with extra costs?
Nick Thomas-Symonds
I do not accept that that is a risk of the Bill. As the hon. Lady knows, the drugs are available for pennies a day. Under the Bill, the Government would step in to address a market failure. The Bill will not have the impact that she believes it will have. She makes a reasonable point, but it is not one that will arise under the apparatus and structure proposed by the Bill.
The alternative to the Bill—I firmly believe that if this Government do not do this, a future Government will have to legislate—is to continue to encourage more off-label prescribing. Even if that were desirable, very little has happened. In a letter dated 2 November, the Royal College of Physicians states:
“As there has been no meaningful progress on a non-legislative solution to this issue, we believe that your Bill is an important first step towards expanding access to these vital drugs.”
The proposal was debated a year ago and we have had a year to see whether there is a non-legislative solution to the problem.
The Bill has incredibly wide support across the professional spheres. I apologise in advance for not naming every charity that supports it.
Christina Rees (Neath) (Lab)
The Bill has the support of a huge number of medical research charities, which lead the way in research on the use of repurposed drugs. Currently, there is no route to market for off-patent drugs in new indications. Does my hon. Friend agree that the Bill will fix that anomaly?
Nick Thomas-Symonds
I agree entirely with my hon. Friend. Twelve medical research charities back the Bill; the NHS clinical commissioners in England back the Bill; and the British Medical Association backs the Bill. More than 10,000 members of the public have written to their MP in support of it. That is in addition to the 20,000 who wrote last year to the former Member for Cardiff North. Four of the medical royal colleges support the Bill. Forty eminent clinicians wrote in recent weeks to The Daily Telegraph to support the Bill. It has incredibly wide support across parties and among the professions.
Albert Owen (Ynys Môn) (Lab)
I congratulate my hon. Friend on the Bill and pay tribute to Jonathan Evans, a thoughtful Member of Parliament who introduced a Bill in the previous Parliament. In addition to the long list of experts that my hon. Friend has quoted, I am sure he has had other lobbying letters. I had one from a multiple sclerosis sufferer. He eloquently put his case and said: “Please be there to give us hope.” Does my hon. Friend agree that the Bill will give us hope for cures for the future?
Liz McInnes (Heywood and Middleton) (Lab)
We are talking about people who support the Bill. The Association Of the British Pharmaceutical Industry says that it supports the principle of the Bill, but that it is concerned that it could discourage the development of new medicines. Does my hon. Friend agree that the Bill in no way precludes the normal process of research and development for the manufacture and discovery of new drugs?
Nick Thomas-Symonds
I agree entirely with my hon. Friend. Repurposing is becoming increasingly common. Approximately 10% of the Brain Tumour Research portfolio is in repurposed drugs. For the Cure Parkinson’s Trust, the figure is 50%, and for the Alzheimer’s Society it is 13.6%. My hon. Friend makes a powerful point.
Liz Saville Roberts (Dwyfor Meirionnydd) (PC)
The debate is poignant for me. Breast Cancer Now is very supportive of the Bill, and my best friend and the mother of my goddaughter is currently in hospital recovering from her second treatment for breast cancer in 10 years. I should like to take the opportunity to say this. Christine Lennon, the most organised, capable and scary of my friends: we all want you home as soon as possible. [Hon. Members: “Hear, hear.”]
Some 850,000 people suffer from dementia, and that number is likely to increase to 1 million in 10 years’ time. The matter raised by the Bill is relevant to 20% of the drugs that the Alzheimer’s Society support, and it claims that the Bill will enable it to work on off-patent drugs. Does he agree that that is very significant, given that the disease affects so many people?
Nick Thomas-Symonds
On the second part of the hon. Lady’s intervention, I entirely agree that it would assist the Alzheimer’s Society. On the first part, I am sure the whole House wishes her best friend a speedy recovery.
Given the time restraints, I will touch on just one benefit that the Bill would have. zoledronic acid, a type of bisphosphonate, was originally used to treat bone fractures in advanced cancer and osteoporosis, but it can also reduce by 28% the risk of breast cancer spreading to the bone in post-menopausal women. If it were routinely available to 34,000 women, it could save 1,000 lives a year, at the cost of about 5p per day per patient. That is precisely the kind of benefit the Bill could bring.
Dr Rupa Huq (Ealing Central and Acton) (Lab)
My hon. Friend talked about cost. Does he agree with my constituent, Elena, of west Ealing, who wrote to me on this subject to say that it would help MS sufferers in particular and that
“it is crucial that affordable treatments are used to their full potential particularly at a time when NHS resources are stretched. The Bill will tackle this issue head on and stand to benefit hundreds of thousands of people in Ealing and beyond.”?
Nick Thomas-Symonds
I agree entirely with my hon. Friend. It is precisely that kind of benefit that the Bill would bring.
Rachael Maskell (York Central) (Lab/Co-op)
Today, a constituent of mine, Mark Hamilton, is laying to rest the ashes of his father, who lost his life very suddenly in September. Had these drugs been available then, he might well be with us today. Is that not why it is so important that the Bill proceeds to its next stage?
Nick Thomas-Symonds
I am grateful for that intervention, because the Bill could have a positive impact on the lives of many people. That is why it should move forward.
This is a common-sense solution to an acknowledged problem. There is even a precedent for it. The Secretary of State, who is not in his place, but whom I am sure will be ably represented by the Minister, is the licence holder for a chemotherapy drug called Erwinase. It is manufactured by a state-owned pharmaceutical company called Porton Biopharma Ltd, which was established in July and in which the Secretary of State is the sole shareholder. There is, therefore, a precedent for the type of intervention I am talking about to deal with this market failure. The Bill will bring enormous benefits to people. It is a sensible solution to the problem.
Chris Stephens (Glasgow South West) (SNP)
I congratulate the hon. Gentleman on bringing the Bill before the House. A constituent of mine, Tracey Hardie, is a cancer survivor, but this is not just about her; it is about other people, and those who have survived cancer are very supportive of the Bill.
Nick Thomas-Symonds
The hon. Gentleman is absolutely right. The Bill could really assist people out there in the country, which is why it should proceed.
Anne Marie Morris
The hon. Gentleman has not talked about the consequences for off-label drugs. I do not think that anybody would disagree with using good drugs for alternative purposes. Most of the concerns I have heard about the Bill are around the methodology and the process and the impact on off-label drugs. At the moment, drugs not on the agreed list can be prescribed, and I would be concerned if there was any threat to the ability to do so.
Nick Thomas-Symonds
With respect, that is precisely what the Bill seeks to do. We are talking about drugs that have been on patent for a particular purpose and that have a licence in that indication, but which also have another purpose. At the moment, theoretically, they can be prescribed off label, but that simply does not happen consistently across different spheres of medicine or across the country. The letter I read out from the Royal College of Physicians, dated 2 November, made that exact point.
The Bill is a common-sense solution that commands support across parties, in different spheres of the medical profession and from other stakeholders, and I commend it to the House.
Alistair Burt
I will take interventions, but it is only fair to the House that I respond to the debate and answer some of the charges that have been made—[Interruption.] It is not disgraceful; it is the right answer.
Nick Thomas-Symonds
Will the right hon. Gentleman accept two points? First, he made clear his objections to the Bill, and they were firmly answered by the expertise of the hon. Member for Central Ayrshire (Dr Whitford). Secondly, the Government have had a chance to put forward a non-legislative solution to the problem in the past year, but they have completely failed to do so, so why is he still refusing to allow the Bill to proceed to Committee?
Alistair Burt
After I have dealt with the other interventions, I will deal with the actions since last year’s Bill.
Alistair Burt
I am happy to be corrected in relation to procedure. The procedure of the House allows the Minister to speak until 2.30 pm. [Interruption.] I am not obliged to do so—that is correct—but I am choosing to do so because I believe that I would not be performing my duty if I were to allow a Bill that I think is wrong and potentially harmful to go through.
Alistair Burt
I am not going to take any further interventions; otherwise, I will take it that the House does not want to hear from me. I have to make some progress.
Alistair Burt
Not at the moment, because this point is absolutely crucial to put on the record.
Prescribing in that way is part and parcel of normal, everyday clinical practice, as the hon. Member for Central Ayrshire confirmed. It is very common in prescribing for children and in treating some forms of pain. Most doctors, particularly GPs, will do it every day in their clinical practice. That has already been covered in relation to tamoxifen and raloxifene for the prevention of familial breast cancer. As was rightly identified by the hon. Member for Torfaen, the issue is compounded when drugs come off patent and new evidence suggests that they would be appropriate in the treatment of new indications.
The hon. Gentleman has gathered a lot of support for the Bill, but it does give the impression that such drugs are not being made available to patients. It also suggests that licensing is required to make these drugs available for patients, and that a NICE technology appraisal is required as well.
Alistair Burt
If the hon. Gentleman is happy to say that that is not the impression given, I am pleased to correct what I said.
Nick Thomas-Symonds
I never said that the drugs were not available. I said that they could theoretically be prescribed, but that it did not happen consistently by sector or across the country. That is what I said. It is on the record.
Alistair Burt
In that case, I am more than happy to again let the message go out from the Chamber today that these drugs are available and can be prescribed. Where it is clinically appropriate, they should be prescribed. Seeking this legislation will not change that availability.
Members of the House are doing a highly effective job of bringing their constituents’ concerns to the attention of Ministers and asking our help to resolve this issue. We are not aware of colleagues bringing examples of people who have been refused treatment. It is vital to know if there is evidence of people being refused treatment. As I said, the clinician’s letter that the hon. Member for Torfaen read out was wrong. Unless there is a clinical reason for not supplying the drug, there is nothing to prevent the doctor from doing so.
Alistair Burt
I certainly did myself a disservice with a silly, offhand remark. I entirely accept that. It is not like me and I apologise.
The stance that I am taking as the Minister representing the Government is that I do not believe this is the right vehicle to achieve what Members want. I am also concerned—
Nick Thomas-Symonds
On a point of order, Madam Deputy Speaker. With the greatest of respect to the Minister, he has had a bit more time since the last point of order and it is quite clear that he has run out of arguments and is now talking to the clock. I beg to move that the Question on closure be put.
Palliative Care
Nick Thomas-Symonds Excerpts(9 years, 1 month ago)
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Maria Caulfield (Lewes) (Con)
I am pleased to have secured this debate tonight on the important topic of access to palliative care for those who are dying. There are three key reasons why this debate is so timely and so important. First, it follows hot on the heels of the assisted dying debate that we had here on 11 September. No matter how Members voted, there was cross-party support for the movement for better access to palliative care in this country. Secondly, it is an important subject because from my experience as a cancer nurse working in one of the best cancer units not only in the country but in Europe, I have seen at first hand the difference that good palliative care can make, not just to patients and their families at the time of death, but in the last few weeks and months, making patients’ lives as fulfilling as possible.
Thirdly, the debate is important and timely because it fits in with the discussion of the Access to Palliative Care Bill in the other place. That Bill aims to ensure that wherever people are in the country and whatever disease they are suffering from, palliative care services are available to them. It would put palliative care services into the mainstream for the many, not the few.
Nick Thomas-Symonds (Torfaen) (Lab)
I congratulate the hon. Lady on securing this debate. Should we not see palliative care in its broadest sense, including medical care as well as social care? That co-ordinated approach could make end of life far more tolerable and would mean that people had to go into hospital to a far lesser extent.
Maria Caulfield
I agree, and I will highlight that point later in my speech.
For me, palliative care is about support and services that help to achieve a good death and underpin the care in someone’s final weeks and months of life. What happens now is that all too often the provision of palliative care is distributed on the basis not of need but of availability, and depends on the diagnosis, where the person is treated, and sometimes even their age, leading to a patchy and ineffective service. We heard during the Adjournment debate on Monday night about the impact of not having good bereavement services, which stays with relatives not just at the time someone dies but for years afterwards, and may never go away if they have had a bad experience.
This patchy service continues despite all the hard work in recent years reviewing palliative care provision across the country. As far back as 2008, an end-of-life care strategy was produced, and in 2011 the National Institute for Health and Care Excellence produced quality standards, yet palliative care services remain patchy. To highlight that further, let us look at a few more statistics.
Unfortunately, we know that 100% of us will die eventually, and that three quarters of those deaths will be expected. That means that three quarters of the population could benefit from palliative care, but currently only 48% of people who have palliative care needs receive palliative care support. Of the 500,000 deaths that occur in this country every year, 82.5% are among the over-65s, yet fewer than 15% of that group have access to palliative care. That tells us that those who need it most often have the hardest job accessing it. For older people, death is often seen as inevitable and not something that palliative care should be helping with.
More shockingly, between 50% and 70% of people who are dying say they would like to die at home, but only 30% actually do. Most people end up dying in hospital—just over 50%. Hospitals are amazing places, but they are acute settings helping to deal with urgent and emergency cases. While they do need to do more to provide better palliative care, we need to invest in our excellent hospice movement and facilities so that if people want to die in a hospice, they can. We also need to support our community outreach programmes so that if people want to die at home, they can have that choice too.
Cancer Drugs
Nick Thomas-Symonds Excerpts(9 years, 2 months ago)
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Jim Shannon
I thank the hon. Lady—my hon. Friend—for her contribution, and I am happy to add my support. Indeed, I attended a meeting of the all-party group on off-patent drugs last Thursday, and it is important that we support its campaign.
Nick Thomas-Symonds (Torfaen) (Lab)
It is a pleasure to serve under your chairmanship, Mr Hollobone. I congratulate the hon. Member for Strangford (Jim Shannon) on securing a debate on an important issue that affects many families—perhaps all families—across the UK. I intervene at this point because the hon. Member for North Down (Lady Hermon) has mentioned the private Member’s Bill that I am sponsoring—the Off-patent Drugs Bill. Would the hon. Gentleman agree that there are problems affecting the prescription of off-label drugs? It happens inconsistently across the country, and there are problems of information and a conservatism about prescribing off-label. Does he agree that those problems are best dealt with by legislation?
Jim Shannon
We have hit on an issue that resonates across the whole House. Let us put on the record the fact that there is a goodly representation of other parties today, and those hon. Members are here because they have an interest in the matter. I am pleased to see the Minister in his place. He tells me that I never miss one of his debates, and I do not know whether this is his debate or mine, but we are both here for the same purpose. I am pleased to see the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), in his place as well.
Survival rates are improving, and that development is great for everyone.
Jim Shannon
As the hon. Gentleman says, there are many good examples across the whole United Kingdom of Great Britain and Northern Ireland, where things are done well. We thank the doctors and nurses, who work energetically, and the many charities.
The national target for accessing these life-changing drugs is 19 weeks. The move in Northern Ireland will go a long way towards enabling the health service there to reach that target. My hon. Friend the Member for Belfast East (Gavin Robinson) was correct that we need to focus on that target. Each day in Northern Ireland, 23 people are diagnosed with cancer and 11 people die of it. According to Cancer Research UK, there were 331,487 new cases of cancer in 2011 and 161,823 deaths from cancer in 2012. That tells us a wee bit about the magnitude of cancer and its importance to every person in the whole United Kingdom. More should be done but I can only welcome the recent developments in the Province. I hope that other areas of the country can follow suit by freeing up the funds necessary and introducing legislation to prioritise fighting this awful disease to the best of our ability.
In England and Wales, cancer remains one of the biggest killers, causing 29% of all deaths. Progress has been made and all progress is welcome, but it is opportunities like today when we can really make a difference to the lives of individuals and families from all walks of life. Recent developments across the water—here—are deeply concerning. In September, 16 drugs were removed from the Cancer Drugs Fund list in addition to another 16 drugs that were removed from the list in January.
Nick Thomas-Symonds
I congratulate the hon. Gentleman on making that point. Does he agree with me that the removal of Abraxane from the national Cancer Drugs Fund list is particularly concerning given that pancreatic cancer patients, 80% of whom are diagnosed when the cancer has already spread, are often left with a finite and small amount of life? A drug such as Abraxane can make a significant difference to those people and that decision should—I hope it will—be reversed in future.
Jim Shannon
The hon. Gentleman must have helped me put my notes together because I have written that one down. It was one of my next points. Yes, we are concerned about that. I look forward to the Minister’s response on that point because, quite clearly, it is hard to understand why Abraxane should be removed given that it at least extends the life of many people.
Adult Stem Cells and Life Sciences
Nick Thomas-Symonds Excerpts(9 years, 3 months ago)
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Mr Burrowes
A fine example of a forward step is the progress made by Professor Geoffrey Raisman, director of the spinal repair unit at University College London institute of neurology, whose work could ultimately lead to the repair of spinal cord injuries in humans.
Nick Thomas-Symonds (Torfaen) (Lab)
Does the hon. Gentleman agree that the collecting of data at transplantation centres is very important and so is the sharing of it if we are to make progress? There should be greater emphasis on that, and it should be properly resourced.
Mr Burrowes
Absolutely, and I will come on to that. The quality of the data that can be shared is important, and the key ask of the Government is to support the call for a national stem cell transplantation network, which will help in that.
However, Professor Raisman’s pioneering work remains underfunded. He hit the headlines in 2014 when Polish surgeons, in collaboration with scientists in London, enabled Darek Fidyka, a man paralysed from the chest down in a knife attack, to walk again using a frame. Professor Raisman said that the achievement was
“more impressive than man walking on the moon.”
Sir Richard Sykes, chair of the UK Stem Cell Foundation, said:
“To fully develop future treatments that benefit the 3 million paralysed globally will need continued investment for wide scale clinical trials.”
We are trying to get to precisely that clinical basis.
Fibromyalgia
Nick Thomas-Symonds Excerpts(9 years, 5 months ago)
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Alok Sharma (Reading West) (Con)
I beg to move,
That this House has considered treatment of fibromyalgia.
It is a pleasure to serve under your chairmanship for the first time in this Parliament, Mr Crausby. I welcome my hon. Friend the Minister to his place. He did brilliant work in his two Departments in the last Parliament, and I am sure that he will continue to excel during this.
I want to use this debate to throw a spotlight on a not particularly well known or medically well researched, but incredibly debilitating condition: fibromyalgia. I shall set out the views of some of those suffering from the condition, highlight the treatment available to help sufferers and, ultimately, make a few suggestions as to what can practically be done to improve life quality for those debilitated by fibromyalgia.
The last debate that I held in Westminster Hall was on sentencing for dangerous driving. That attracted significant interest from and participation by fellow Members from across the House. As you can see, Mr Crausby, today’s debate has attracted more modest interest. That is not because fibromyalgia is not a serious medical condition, but simply because it is not particularly well known, not least within some parts of the medical community.
Nick Thomas-Symonds (Torfaen) (Lab)
Does the hon. Gentleman agree that a critical issue is awareness— public awareness and the awareness of sufferers themselves of what help is available? To give just one example, local support groups can be tremendously helpful. This is a two-track issue: it is about public awareness and the awareness of sufferers themselves.
Alok Sharma
Yes, of course; the hon. Gentleman is absolutely right. I shall go on to provide more details of what is going on locally and perhaps what we ought to be doing nationally.
I first learnt about the condition almost by accident a few years ago, through a chance conversation with some constituents. Since then, through the work of the excellent Reading fibromyalgia support group, which meets regularly in my constituency, I have been able to learn more about fibromyalgia and meet many of the people locally who are trying to cope with the condition, as well as medical practitioners who are focused on helping sufferers.
George Freeman
My right hon. Friend is an outspoken advocate for addressing such needs in Wales, in health as in other issues. He will know that pain centres in England are distributed evenly, but they are a devolved matter in Wales and the other devolved Administrations. I will happily write to the relevant people in Wales to highlight the importance of this condition and what we are trying to do in England, and to encourage them to adopt similar best practice. I cannot vouch for their response and, as in other areas, it is a matter for the local Assembly, but I will happily pick that up.
In addition to the specialised pain services that are available, a number of NHS trusts provide dedicated fibromyalgia clinics, such as that at the Royal National hospital for rheumatic diseases in Bath. That clinic offers expert support and advice, as well as a fibromyalgia coping skills programme to facilitate self-management. Some constituents of my hon. Friend the Member for Reading West have raised concerns about the co-ordination of their care; I reassure him and them that improving care and support for people with long-term conditions, and improving the co-ordination of that care, is a central ambition of this Government, as reflected in our mandate to the NHS.
Nick Thomas-Symonds
Is there not also a social aspect to this—the issue of sufferers being able to support each other? I am delighted to hear the Minister’s point about co-ordination, because improving co-ordination is crucial to such support being more widely and more consistently available across the UK.
George Freeman
The hon. Gentleman makes an important point. Such co-ordination is happening across different therapeutic areas. Charities have a role in providing a strong voice for patient empowerment. Patient networks, increasingly including social media, allow us to advance the voice of disease sufferers in research, treatment and patient support. I am delighted by the news of today’s amalgamation of the two charities, which can only be a good thing for developing wider understanding and a patient voice in new treatment pathways.
We want everyone with a long-term condition— around 15 million people—to be offered a personalised care plan that sets out their needs and preferences for care. Martin McShane, who is responsible at NHS England for improving outcomes for long-term conditions, and Peter Kay, the national clinical director for musculoskeletal care, are working hard to make that happen. I will ensure that the points raised today are passed on to them as part of that work.
My hon. Friend the Member for Reading West mentioned research. Nationally, the Department of Health has substantially increased overall medical research investment from £885 million a year in 2010 to the more than £1 billion allocated for 2015-16. The usual practice of the Department’s National Institute for Health Research, for which I am responsible, is not to ring-fence funds for expenditure on particular topics but to invite and assess research proposals in all areas. Although no fibromyalgia projects are currently funded by the NIHR, the European Commission is contributing nearly €6 million to a project seeking better ways of treating chronic pain, including fibromyalgia. I look forward to the results after the project ends in 2018, and I urge hon. and right hon. Members who are present, FMA UK and the patients it represents to feed their comments into that project and to welcome the results.
We are considering further ways to showcase the world-class research funded by the NIHR, and we are working in this place, and with the public and charities, to drive accountability. I am working with the NIHR to put together a parliamentary open day to allow Members such as those who have spoken today to see where the £1 billion a year is spent, and to work with charities and patient groups on making applications.
A number of colleagues on both sides of the House have talked about discrimination in the workplace, which is a serious concern for people both in my hon. Friend’s constituency and in local fibromyalgia support groups. It is completely unacceptable if patients with long-term conditions are misrepresented as malingerers at work. Historically, we have seen that happen with other conditions, and as research and understanding of the disease develop, we need to be aware that people who present with conditions that are not well understood may be suffering from diseases that have yet to be properly diagnosed. People with long-term disabling conditions are rightly protected from discrimination in the workplace under the Equality Act 2010. Where a disability, such as one arising from a long-term condition, has been established, the Act requires employers to make reasonable adjustments to ensure that the disabled are not placed at a substantial disadvantage compared with their non-disabled colleagues. Failure of an employer in that regard could amount to direct disability discrimination under the Act.
My hon. Friend and a number of others spoke about the establishment of a network of specialist fibromyalgia clinics. We are aware of a number of dedicated fibromyalgia clinics across the UK, including the UK’s leading centre at the Royal National hospital for rheumatic diseases in Bath, but I will write to Martin McShane, the head of long-term conditions at NHS England, to ask whether more formal networks can be established and whether, with the support of active patients and charities, there is more we can do to develop such groups and to help them to support research on developing new treatments and pathways.
I genuinely thank my hon. Friend for his tireless constituency work to raise this issue, and I congratulate him on securing this debate. So much medicine begins with the small voice of misunderstood patients who get together through charities to promote research, raise the profile of a disease in this place and elsewhere, build a head of steam, bid for research projects—the NIHR stands open and ready to receive bids—and build cross-party support. I have no doubt that, in the years to come, this work, this discussion and this topic will come to be seen as one of those occasions when the more we come to understand a condition, the more we drive research on cure and diagnosis and the more we improve treatment across the NHS. I warmly welcome his leadership in bringing fibromyalgia to the House’s attention today.
Question put and agreed to.