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New report to bring rare diseases ‘Out of the Shadows’

Following nine months of consultation, the rare neurological disease report, titled ‘Out of the Shadows’, has been launched by the Neurological Alliance today.

As a member of the Neurological Alliance, PSPA has contributed to the report and supports the five key recommendations, which aim to establish multi-disciplinary, joined-up care, treatment and support for people living with rare neurological conditions.

Improving equality of access, awareness, diagnostic testing, mental health support and social care is essential to improving the lives of people living with Progressive Supranuclear Palsy (PSP) or Corticobasal Degeneration (CBD). And we stand with the Neurological Alliance as they call for NHS leaders, specialised commissioners and the government to take action.

There could be up to 10,000 people living with PSP &  CBD in the UK at one time, and as is commonly experienced by the 150,000 people living with rare neurological conditions in England, access to right care can be very difficult without a timely and specific diagnosis.

In December last year, the initial findings of the PSPA funded research study PROSPECT, revealed up to 50% of the patients they saw, were initially misdiagnosed with other neurodegenerative conditions such as Parkinson’s Disease. In addition, the findings highlighted it can take up to two years, sometimes even longer, for a diagnosis to be confirmed. And this can be too late to provide the quality of the care and support the families affected should receive.

Bradley Payne is all to aware of these issues, as he and his family struggled get the answers they needed when his dad John, started to experience balance problems in 2016. Despite regularly falling backwards, a key symptom of PSP, due to the rareness of condition, health professionals struggled find what was wrong. Eventually Bradley’s dad was discharged after they said there was nothing more they could do and there was lack of community health based support available to them.  PSP wasn’t fully diagnosed until after his dad had passed away in May this year, four years after his initial symptoms began, when it was picked up during a post-mortem examination.

Earlier this year, a PSPA patient based research survey identified a number of key areas where more research and information was needed such as increased awareness of the conditions in primary and secondary care, better diagnosis and improved care.  On the back of these findings our supporters helped to lobby MPs about these issues, when we launched our “Join the Fight” campaign on 29 February, Rare Diseases Day.

The launch of the ‘Out of the Shadows’ report has given us a great opportunity to come together as a collective with the Neurological Alliance, to shine a brighter light on the challenges people living with rare neurological condition face and the crucial role charities play in providing support. And we hope steps are taken to ensure diagnosis improves and access to personalised and co-ordinated care is provided.

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