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Progressive Supranuclear Palsy

Volume 557: debated on Wednesday 23 January 2013

It is a pleasure to serve under your chairmanship, Mr Bayley. I am delighted to have secured this debate, in which I will draw to the Chamber’s attention the needs of a specific group of people who need us to take action on their behalf.

In Towcester, in my constituency of South Northamptonshire, there is a national charity called the PSP Association, which is the only charity in the UK working solely for people with the neurological conditions progressive supranuclear palsy and the related disease corticobasal degeneration and those who care for them. PSP and CBD are diseases closely related to motor neurone disease and Parkinson’s disease.

I will address that later, but my hon. Friend is right to make that point, because it is believed that more people suffer from PSP than from MND, despite the fact that the latter disease is much more commonly known in general society.

PSP and CBD are similar diseases, and PSP is often used as shorthand for both conditions. In progressive supranuclear palsy, progressive means that it gets steadily worse over time; supranuclear means that it damages parts of the brain above the pea-sized nuclei that control eye movement; and palsy means that it causes weakness. Members may never have come across PSP before, but, sadly, it takes many lives.

PSP is caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing. Over time, PSP can rob people of the ability to walk, talk, feed themselves and communicate effectively. The average life expectancy is seven years from the point of diagnosis. Those who are diagnosed with PSP suffer severe and unpredictable impairments that have an enormous impact on the individual and their family. PSP is a dreadful disease.

I am pleased that since 2010, having written several times to the Department of Health, there is now better recording of PSP on death certificates, giving a clearer indication of the number of sufferers. Our attention, however, must now turn to diagnosis. Statistics show that some 4,000 people are living with PSP in the UK, but because diagnosis is still so uncertain, neurologists believe the figure could be as high as 10,000. Astonishingly, as my hon. Friend mentioned, there may be more PSP sufferers than sufferers of MND in the UK today.

I congratulate my hon. Friend on securing this debate. She has mentioned the relatively small number of people living with PSP, but is not part of the problem that many health care and social care professionals do not fully understand the condition?

Yes, my hon. Friend is right. That is one of the points that I want to put to the Minister today.

The PSP Association offers advice, support and information to people living with the disease. The association also funds research to find potential treatments for the condition. The charity’s aim is to ensure that people affected by PSP do not feel that they have to face the future alone.

Although the PSP Association operates with few resources and no statutory funding, it supports people living with the disease and their carers through a variety of means. The association has a telephone helpline and information advisory service, for example, and it offers support groups across the country and a small team of specialist care advisers. It produces a wide range of publications and communications.

The PSP Association is active in scientific research, and it has given projects £2.5 million in funding over the past 15 years to find causes, treatments and an eventual cure for PSP. I sincerely congratulate the association on its wonderful work, and I am delighted that many PSP supporters are here today.

I will share the story of one recent fundraising event. As patron of the PSP Association, I was delighted to be invited to the Dorchester—Sebastian Coe was the guest of honour—as the guest of Brigadier Michael Koe, the association’s founder and former chairman, and Christopher Kemball, the current chairman.

The tragic irony of PSP is that Brigadier Michael Koe, who is a constituent of mine, lost his wife to PSP. His four sons, who were determined to do something to raise awareness of the disease, decided to run in the London marathon. The brigadier blagged his way in to Lord Coe’s offices when he was still a Member of Parliament, using the fact that they shared the same surname although not the same spelling, to ask for help in promoting awareness of PSP.

Lord Coe offered his help. He went out and had photos taken of himself training with Brigadier Koe’s sons. For the next few years, he supported them in that way only to find that on the fourth anniversary of his involvement, his own mother was diagnosed with PSP, so he ended up with his own bitter experience of how PSP can affect families. He has kindly sent a short quotation for today’s debate, which I would like to share with hon. Members. He says:

“I am always pleased when an opportunity to raise awareness of PSP and the challenges faced by those affected arises. My mother lived with PSP for a number of years so I know only too well how important it is to receive the appropriate and timely support from health and social care, and the difference it can make to the individual affected and their family.”

Although many sad stories were told at the Dorchester that evening, the event was a huge success. Lord Coe had invited many sporting legends such as Daley Thompson and Steve Cram, as well as some of the current Olympians. It was quite an amazing evening and they raised more than £200,000 for the worthwhile cause.

The work of Brigadier Michael Koe and his family and their determination to honour the memory of his wife is truly touching. I pay tribute to the fantastic work that he has done in promoting the importance of the awareness of PSP.

I congratulate the hon. Lady on bringing this very important matter to Westminster Hall. Does she agree—I suspect that she does—that physio and aids should be made available at an early stage of diagnosis, so that those in the last few years of this debilitating disease have a quality of life and a relationship with their families at a time when they need it most?

The hon. Gentleman makes an extremely good point. He raises issues that I want to come on to in terms of calls to action for the Minister. Sadly, the speed of degeneration of PSP sufferers often means that the need for extra resources quite rapidly increases, so it is important that the right care pathway is put in place.

The association is developing a UK-wide research network to allow researchers to share their knowledge, experience and data from their studies into the condition and to increase the number of people with PSP that individual researchers can have contact with.

In 2011, the association commissioned a UK-wide needs mapping exercise for people with PSP and their carers. The results highlighted that the nature and rapidity of PSP means that the needs of those living with the condition are very specific. For example, the palliative care that would be deemed to be required in the late stages of many conditions or at the end of life may very well be required for someone with PSP for almost half of the time that they live with the condition. The rapid progression of the disease and often early onset of communication and cognitive problems have a huge impact. Advance decision making on end-of-life issues needs to take place much earlier with PSP than with many other conditions.

The ongoing needs of a sufferer are ever-changing, and so is their need to see a range of health and social care professionals who can provide the right care, support and equipment at the right time. It is not easy for the carers of people with PSP who face equally difficult challenges trying to navigate their way through the labyrinth of health and social care services and to keep up with the pace of the disease and the ever-changing needs of those for whom they are caring.

As a charity, the PSP Association is indebted to other organisations such as the Neurological Alliance and Carers UK for championing the needs of carers at every level. Although the work of such organisations is critical, it should not replace the needs of carers also being addressed by the statutory services.

In April this year, we will see the introduction of clinical commissioning groups, which will hold the purse strings for our local health services and will be responsible for commissioning the health and social care services for their local population. We are awaiting the imminent appointment of the national clinical director responsible for championing patient involvement and improvement to neurological services in England. Those reforms of our health and social care services are very much welcomed by the PSP Association, but with a caveat, which is that it is essential that people with PSP, their carers and other people living with similar neurological conditions have a voice locally.

The PSP Association has developed a care pathway guide for PSP that outlines the standards of care and support that sufferers will need from diagnosis onwards. It is intended to inform and educate health commissioners and social care professionals to ensure that people with PSP are made as comfortable as possible. Care must also be co-ordinated, as it is essential that it involves a multidisciplinary approach and a regular assessment of the patient’s ongoing needs. That is not only about commissioning services locally, but about saving the NHS funds used in unnecessary emergency admissions to hospitals.

A recent report by the National Audit Office found that the number of emergency neurological admissions to hospital had doubled since 2005. Between 2004-05 and 2009-10, the number of neurological emergency admissions increased by 32% compared with a 17% increase in general emergency admissions over the same period. As well as putting a significant strain on the NHS, that has a severe impact on the well-being of patients and their families. The PSP Association is proactive in helping to predict the care needs of patients in the future. That is vital in reducing emergency hospital admissions with increased awareness of PSP.

As MPs representing our constituents, we need to support neurological charities such as the PSP Association and ensure that people suffering from neurological conditions are fully understood and considered in the proposals for health and social care reform and in the commissioning of services locally and nationally. Access to timely, co-ordinated care and improved integration across health and social care services should be seen as a priority, to enable quality of life for people with PSP and those who care for them.

I should be grateful to my hon. Friend the Minister if he responded on four key points. First, how are people with PSP and other rare neurological conditions being considered in the proposals for health and social care reforms? Secondly, what support is available not only to the individual, but to the carer, especially as the needs of PSP sufferers are quite specific in terms of palliative care? Thirdly, what education and training is given to health and social care professionals, so that they are aware of the specific condition and can respond to the needs of sufferers and their carers? Finally, what can be done to ensure that more research into PSP is carried out, so that the diagnosis is quicker and more accurate?

I am grateful to the Minister for being here today. I look forward to his response and, I hope, the answers to some of those questions.

It is a pleasure to serve under your chairmanship, Mr Bayley, and I congratulate my hon. Friend the Member for South Northamptonshire (Andrea Leadsom) on securing the debate.

A great value of these Westminster Hall debates is that, on something such as this, Ministers are forced to think about a specific issue that might not otherwise come across the radar and to devote some time and attention to it. They also get officials thinking about things as well, so I am grateful to the hon. Lady for securing the debate and for speaking so clearly and passionately about it. I know that she is a patron of the PSP Association, and I welcome anyone here who is from the association or associated with it in any way. It is so good to have you present this afternoon.

I join my hon. Friend in paying tribute to the work of the association. She described the support that it can give families who have a loved one with this condition. For those individuals, it is a lifeline of critical importance. The great value that disease-specific organisations can provide is in this real attention to detail and an understanding of the condition that the statutory services often cannot offer. Their role in supplementing the formal NHS is therefore of critical value. I pay warm tribute to the work that they undertake.

My hon. Friend mentioned Lord Coe. It is great to have someone such as him as an advocate for the condition and for the PSP Association. It was an extraordinary and unhappy chance that his own mother ended up with the condition and died from it. I should also, of course, pay tribute to the work of Brigadier Koe, who clearly has made a big impact in advancing the cause of better care and treatment of people with this condition.

Voluntary sector organisations will have a crucial role to play, offering their expertise, as in the care pathway guide that I know the PSP Association has pioneered. The expertise of such organisations will be invaluable locally to clinical commissioning groups, to which my hon. Friend referred, and the new health and wellbeing boards, which will be a crucial local forum for discussion of a range of conditions, including rare conditions. Such organisations will also offer their expertise at national level to the NHS Commissioning Board, the National Institute for Health and Clinical Excellence and others.

The Neurological Alliance is the collective voice of more than 80 brain and spine charities and, through its national leadership group and network of regional alliances, is an influential player in this field. I understand that the PSP Association is a member of the alliance and I would encourage it to feed into the alliance’s work as a means of getting its voice heard. That is clearly a very important route.

I turn to the question of research. With no cure as of now, research offers a source of hope for those living with PSP. The Department of Health funds NHS research and development through the National Institute for Health Research. In addition, the Medical Research Council funds a broad portfolio of medical research. Neither the NIHR nor the MRC usually ring-fences funds for expenditure on particular topics. Research proposals in all areas compete for funding, based on their strength as a proposal. Both organisations welcome applications for research into any aspect of human health. Those are subject to peer review and judged in an open competition, with awards being made on the basis of the scientific quality of the proposals made. The principle that decisions on individual research proposals are best taken by researchers through peer review is a cornerstone of science funding in the UK and is strongly supported by the coalition Government. Such decisions are rightly left to those best placed to evaluate the scientific quality, excellence and likely impact of the proposals under consideration.

My hon. Friend asked how people with PSP would benefit in April this year, when our new health and care reforms take effect. Through our reforms, we are aiming to ensure that, as far as possible, people with conditions such as PSP can maintain or enhance their quality of life. This Government are committed to providing the best possible quality of care for people with rare conditions. When we took office in 2010, we endorsed the right in the NHS constitution that says that no one should be left behind just because of the rarity of their condition. I recognise that there is often a problem within health services of a lack of knowledge among the clinicians themselves. I think that point was made in an intervention. It is always a challenge to ensure that we spread understanding and awareness.

From April 2013, the NHS Commissioning Board will directly commission services for people with rare conditions on a national basis. Those new arrangements for commissioning will bring real benefits to people with rare conditions such as PSP. By commissioning these services just once rather than reinventing the wheel all over the country, we will be able to avoid duplication in planning and ensure that the highest level of care is commissioned for patients, regardless of their geographical location. With rare conditions, that is the best way to ensure that there is a real concentration of expertise, so as to ensure that commissioning is carried out in the best possible way.

The NHS Commissioning Board will host four new strategic clinical networks for up to five years, including a clinical network covering mental health, dementia and neurological conditions. These clinical networks are potentially of enormous value. We have seen the value of them in treating cancer and other conditions. Now there is the potential for benefits to be gained in the treatment of neurological conditions. Through this particular network for mental health, dementia and neurological conditions, the board itself and clinical commissioning groups will have access to a broad range of expert clinical advice to inform decisions about the way that care for local populations is planned and delivered.

Through quality standards developed by the National Institute for Health and Clinical Excellence, commissioners, clinicians and providers of services will have evidence-based descriptions of what good care and support should look like. We have asked NICE to develop a quality standard on relatively uncommon neurological conditions, as part of a library of approximately 180 NHS quality standards. In addition, people with PSP will also benefit from the cross-cutting quality standards, which have already been published and which cover end-of-life care and patient experience in adult NHS services, the point being that a number of these standards are applicable across a range of different conditions. So people with PSP will also benefit from the quality standard on long-term conditions and people with co-morbidities and complex needs, which we have also referred to NICE for development.

My hon. Friend also discussed the importance of the patient voice within the local health system. That is of critical importance. As we move away from a paternalistic health system to a personal health system, listening to what the patient actually wants and what their priorities are will be vital. The theme of patient empowerment and voice is central to our health and care reforms, and local HealthWatch organisations—together with their national body, HealthWatch England—will champion patient voice in the health and care system.

I should also mention that in the mandate, which is the Government’s statement of our priorities for the NHS and which the NHS Commissioning Board is legally obliged to seek to implement, there is a specific requirement for people with long-term conditions to have a personal care plan, and they themselves will be involved in the preparation of that plan. That happens in places already, but it does not happen uniformly, and we must make it the norm rather than the exception. We have to absolutely recognise that everything must be focused on the patient’s interests in shaping the system to deliver that care.

Consequently I encourage those with PSP to feed their views into local HealthWatch organisations—the local patient voice—which formally take up their responsibilities on 1 April. Local HealthWatch organisations will have a seat on the new health and wellbeing boards, and through that they will be able to ensure that patient and public views are represented and can help to shape local health and care services.

I turn now to end-of-life care. My hon. Friend also spoke about the importance of palliative care. As she described, rapidly advancing diseases such as PSP may require palliative care throughout the progression of the disease, in order to support patients, as they face a declining physical and mental state, and their families. We know that the current system of care does not work well enough. Some patients receive excellent care and their families receive excellent support, while others miss out. This is partly a reflection of the origins of specialist palliative care as a discipline in the care of people with cancer, and that remains the main focus of palliative care services, but those services must be appropriate for all conditions, obviously including PSP.

We have highlighted the need to extend services to those with other conditions or diseases. The end-of-life care strategy aims to improve care for people approaching the end of life whatever their diagnosis and wherever they are, including enabling more people to be cared for and to die at home, if they wish. About 50% of people still die in hospital, although most people want to be able to die at home if that is possible, and we must ensure that their interests and priorities are respected in that regard. The National End of Life Care Programme has developed an end-of-life care pathway for neurological conditions, working with the Neurological Alliance and the National Council for Palliative Care. The pathway, which was published in 2010, sets out a framework to support the provision of improved care for that group, including those with PSP.

We are committed to increasing awareness of rare conditions—a point made by my hon. Friend in her speech—including PSP. That commitment has been demonstrated through the development of the UK plan for rare diseases. The plan will bring together a number of recommendations designed to improve the co-ordination of care and to lead to better outcomes for everyone with a rare disease, including people with PSP. We have consulted on the rare disease plan, and we published a summary of the consultation responses in November last year. Work is on track to produce the plan by the end of this year, which will help people with PSP and many others with rare conditions.

My hon. Friend also focused on education and training. Our doctors and other staff across the NHS receive some of the best training in the world, and as my hon. Friend recognises, it is important for that to include the right information and techniques to alert them to the possible presence of a rare disease when a patient presents to them. We must recognise that PSP is a rare condition, one among the hundreds that a health professional may see during their career, and it may not be feasible or practical to draw particular attention to it above all those other conditions. That said, we recognise the difficulties and, as part of our consultation on the UK rare diseases plan, we invited ideas on what more can be done to train doctors in the identification of rare diseases and on whether there are innovative ways of familiarising health professionals with rare diseases in their professional training. Furthermore, the consultation identified that training for all NHS staff to raise wider awareness and understanding of rare diseases was also important in promoting equality and in combating the stigma and discrimination sometimes associated with such diseases.

I entirely agree with my hon. Friend when she drew attention to the vital role that carers play in supporting people with conditions such as PSP. Between 2011 and 2015, the Department is providing the NHS with an additional £400 million to support individuals in their role as carers. The “Recognised, valued and supported: next steps for the Carers Strategy” document sets out Government priorities in the area, reinforced in the 2012-13 NHS operating framework, which sets out the priorities for that year.

My hon. Friend described the labyrinth that people with conditions and their carers often find themselves trying to negotiate. One aspect of the reform legislation, which I very much welcome, is the focus on integrated care. Too often, carers are in silos, and people are pushed from pillar to post. They can so easily fall into the gap. If we can develop a much more integrated approach to support people with a rare condition such as PSP, with clinicians at primary and secondary level working together much more closely, everyone would benefit.

I am grateful to my hon. Friend for raising the issue. As I said, the value of this debate is to draw the matter to Ministers’ attention and to obtain a wider airing for and focus on such conditions which would not otherwise be the case. I am happy to continue to engage with my hon. Friend to ensure that people with PSP receive the treatment and care that they deserve.

Question put and agreed to.

Sitting adjourned.