New report highlights challenges people with Rare Neurological Diseases face

[HelenPSPA]

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.

Read the report in full at: neural.org.uk/wp-content/up...

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Thank you Helen. My father died of PSP nearly six years ago. I couldn’t get appropriate care for him. My medics had never heard of the disease even. The need for joined up care from the various disciplines is essential. He suffered greatly as did I as I turned in despair from one place to another for help. I will forward this to a friend of mine whom has a sister suffering with this disease just now. We must help everyone we can. Again, many thanks. Anne Eskell

[raincitygirl]

Bravo to PSPA for its advocacy and education. I only ever heard about these sorts of initiatives from you - an ocean away - not my own country.

Keep up rhe good work!

Anne G