Progressive Supranuclear Palsy

Norman Lamb Excerpts

Wednesday 23rd January 2013 Westminster Hall

[The Minister of State, Department of Health (Norman Lamb)]

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.