Progressive Supranuclear Palsy

Jim Shannon Excerpts

Wednesday 23rd January 2013 Westminster Hall

[Jim Shannon (Strangford) (DUP)]

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?

[Andrea Leadsom]

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.