Progressive Supranuclear Palsy

Amber Rudd 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.