5th August 2010

PSP Association challenges under-reporting in Death Certificates

Death Certificates of those given a diagnosis of Progressive Supranuclear Palsy (PSP) rarely show PSP as the underlying cause. They almost always just show the direct cause of death – usually aspirational pneumonia.

As a result, a recent report by the South West Public Health Observatory (SWPHO), based on analyses of death certificates from 2002 to 2008, referred to a total of 70 deaths from PSP in that period. The incidence reported in Deaths from Neurodegenerative Diseases in England 2002 to 2008 suggests that PSP is either extremely rare or rarely implicated in a person’s death. However, the PSP Association suggests that prevalence is much higher.

Previous research published by Nath et al (2001) suggests that PSP prevalence in the UK is around 6 per 100,000.
Data held by The PSP Association records an annual average of 135 deaths (range 98 to 173) in England from PSP between 2004 and 2009; this is an under-record of deaths in England as The PSP Association is reliant on families informing it about deaths and only some 20% of patients with PSP are registered with the charity.
The PSP Brain Bank at Queen Square has received around 20 PSP brains per year since 2000, all with diagnosis confirmed at post-mortem. This latter figure alone illustrates the degree of error in deaths from PSP as published by SWPHO.

While frequent misdiagnosis of PSP as Parkinson’s or another disease and low awareness of PSP amongst the healthcare professions are contributory factors, The PSP Association believes the low reported prevalence of PSP lies in significant under-recording of PSP at death. This must change if we are to establish accurate data for death from PSP.

Why this matters

The purpose of the SWPHO’s analyses of deaths from neurodegenerative disease is to inform implementation of the Department of Health’s National End of Life Care Strategy – and in particular to help the NHS and its partners commission and deliver high quality end of life care in a way that makes the most efficient use of resources and responds to the wishes of dying people and their families. If, however, the data is seriously flawed, as they appear to be for PSP, then the commissioning of services for PSP will also be flawed.

How The PSP Association will take action

Andrea Leadsom MP, Chair of the PSP Association All Party Parliamentary Group (APPG), intends to raise this issue in a ten minute Bill at the House of Commons after the summer recess, asking for death certificates to show underlying causes.

The PSP Association is seeking the help of the Neurological Alliance and the Medical Profession to raise the profile of this important issue. This is to ensure NHS commissioning is based on accurate data and results in appropriate provision of services for people with PSP and other neurological diseases. The SWPHO is aware of problem that has resulted from the under-reporting of PSP on death certificates and a jointly authored letter to the Lancet from the authors of the Report and The PSP Association has been submitted for publication.

Angela Wilson, Director of Research, PSP Association