Physiotherapist Kathy Weston sheds light on the rare and little-known condition of progressive supranuclear palsy.
With six years’ postgraduate experience working in a variety of settings I have recently taken up a new role, with the PSP Association.
Progressive Supranuclear Palsy (PSP) is a rare, degenerative neurological condition caused by the progressive death of nerve cells in the brain, leading to difficulty with balance, movement, vision, speech and swallowing.
Research into the prevalence of PSP suggests that about 4,000 people in the UK are living with the condition, although neurologists believe the figure could be as high as 10,000, with people commonly mis-diagnosed as having Parkinson’s, stroke, or depression, for example.
No disease-modifying treatments are available and management is centred on symptom control.
People’s lifespans can be limited to about seven years from onset of symptoms, but many people do not receive a diagnosis until well into the disease progression.
The PSP Association has developed a Care Pathway Guide for PSP guide which identifies best practice and recommends a multidisciplinary approach with regular re-assessment throughout the course of the disease.
The guide stresses, for example, that no two people with PSP will experience the condition in the same way, and that and care and support must be tailored to the individual.
However, for many people, the reality seems far removed from the ideal. People often report that they receive a ‘short burst’ of input, before being discharged and having to be re-referred when they require more input as the disease progresses.
This is a very frustrating, time-consuming process with little continuity of care.
As with many services in the NHS, ongoing access to physiotherapy seems to depend on location, with some areas receiving a greater level of input than others.
We, as a profession, need to consider how we can meet the needs of this patient group and provide equitable, ongoing input at the point of need and in a timely fashion, in order to maintain our professional standards of care.
Kathy Weston is a specialist care adviser with the PSP Association
- For more information on PSP and the Care Pathway Guide for PSP, visit: www.pspassociation.org.uk Tel: 0300 0110 122. Email: firstname.lastname@example.org
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