Progressive Supranuclear Palsy

Andrea Leadsom Excerpts

Wednesday 23rd January 2013 Westminster Hall

[Andrea Leadsom (South Northamptonshire) (Con)]

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.

[Amber Rudd (Hastings and Rye) (Con)]

Will my hon. Friend clarify how many people suffer from PSP compared with motor neurone disease?

[Andrea Leadsom]

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.

[Andrew Percy (Brigg and Goole) (Con)]

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?

--- Later in debate ---

[Andrea Leadsom]

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.

[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.