Out of the Shadows: our new report launched today on the need for a better deal for people with rare neurological conditions


Dr Wendy Edwards of PSPA tells us how important our new report, Out of the Shadows, is for shining a light on rare neurological conditions, to improve the care and support people with rare neurological conditions receive along the whole care pathway

Following nine months of consultation, the rare neurological conditions report, ‘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 its 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 and 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 the 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 that 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 that 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 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 his condition health professionals struggled to find out 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-based health support available to John and the family. PSP wasn’t fully diagnosed until after Bradley’s dad had passed away in May this year, four years after his initial symptoms began, when his condition 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 conditions like PSP 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 2020, 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 conditions 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.