Out of the Shadows - Report by The Neurological Alliance
12 November 2020
The hard-hitting report, ‘Out of the Shadows: what needs to change for people with rare neurological conditions‘, includes extensive input from member charities of the Alliance, including SMA UK, in addition to expert clinicians. The report points out that while the number of people living with rare neurological conditions equals the number who have other conditions such as some types of cancer, people with rare neurological conditions are all too often left behind when it comes to accessing the care and treatment they need.
In addition, more than 200,000 people with neurological conditions are expected to be waiting for specialist appointments by the end of the year. People with rare neurological conditions risk experiencing further delays and gaps in their support due overstretched services and waiting lists exacerbated by COVID-19.
Specifically, the Alliance are calling for:
- Changed perceptions around rare neurological condition
- Speedier access to specialists and a diagnosis
- Faster access to new treatments - as part of this, Spinal Muscular Atrophy UK told the Alliance, “The paediatric roll out of Spinraza has been quite good, but the treatment roll out for adults hasn’t progressed at all well.”
- Improved mental health support
- As a matter of course, information should be provided to people with rare neurological conditions and / or their families on diagnosis
- High quality social care and home adaptations are not just ‘add on extras’ for those that need them