People with rare neurological conditions need a much better deal says new Neurological Alliance report
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, in addition to expert clinicians. The report points out that while the number of people living with rare neurological conditions equals the number living with some types of cancer, people with rare neurological conditions are all too often left behind when it comes to getting 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
The Alliance warns that people with rare neurological conditions risk experiencing further delays and gaps in their support due overstretched services and waiting lists exacerbated by COVID-19.
Case Studies In The Report
Livvy, aged 19, has a rare, undiagnosed neurological condition that leaves her in a wheelchair, needing a feeding tube, and having multiple seizures every day.
Bradley’s dad, John, died with progressive supranuclear palsy at the age of 62, before we was even diagnosed, despite his mobility deteriorating quickly over just a few years - clinicians were not able to agree on what condition he had.
Sam, aged 54, has Huntington’s, another progressive neurological disorder; he also has related mental health problems which have not been successfully addressed and he has been in and out of psychiatric wards. Now, tragically, Sam has terminal cancer.
Specifically, the Alliance’s new report Out of the Shadows is calling for:
Taken together, rare conditions are not that rare at all - 1 in 17 people will be affected by a rare condition at some point in their lives, and it has been estimated that nearly a third of genetic rare conditions are neurological or have neurological symptoms. Yet, poor public awareness and a lack of investment in services for rare conditions has meant that, for too long, people with rare neurological conditions have experienced long waits for a diagnosis, poor care coordination and insufficient information provision.
We first had that gut-wrenching sense that she wasn’t developing like her peers when she was around 9 months. Livvy is now and has been tested for a myriad of conditions that cause her relentless epilepsy, but we still don’t have an answer as to why.
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, such as progressive supranuclear palsy (PSP) and corticobasal degeneration (CBD) face, and the crucial role charities play in providing support and lobbying for more rapid diagnosis and access to co-ordinated care.
About The Neurological Alliance
The Neurological Alliance is a coalition of more than 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition. We campaign for high quality care and support to meet the individual needs of every person with a neurological condition, at every stage of their life. Our work is shaped by the experiences of people with neurological conditions and aims to address the causes of poor care.
i. The Neurological Alliance is a coalition of more than 80 organisations working together to transform outcomes for the millions of people in England with a neurological condition. We campaign for high quality care and support to meet the individual needs of every person with a neurological condition, at every stage of their life. Our work is shaped by the experiences of people with neurological conditions and aims to address the causes of poor care.
ii. Neurological Alliance report, Restarting services for people with neurological conditions after the COVID-19 pandemic and planning for the longer term, July 2020.
iii In September 2020, 10 member charities of the Alliance, representing people with rare neurological conditions, responded to a survey about the health care received by their beneficiaries: Ataxia UK, Batten Disease Family Association, Brain and Spine Foundation, Huntington’s Disease Association, Multiple System Atrophy Trust, Transverse Myelitis Society, Narcolepsy UK, PSPA and Spinal Muscular Atrophy UK. We had further contributions to this report from other members of the Alliance, including Dravet Syndrome UK, MNDA, Ring20 Research and Support UK, Spotlight YOPD and Parkinson’s UK.
Iv. In 2019, the Neurological Alliance conducted a survey of more than 10,000 people with neurological conditions, including 1742 people with rare neurological conditions. The findings were published in Neuro Patience: still waiting for improvements in treatment and care, July 2019.
Rare Revolution Editor