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:

• ​​Changed perceptions around rare neurological condition: just because they are complex does not mean they cannot be managed well, says the report. People with rare neurological conditions are entitled to equal access to care and treatment.

• ​Speedier access to specialists and a diagnosis: 4 in 10 charities surveyed recently for the report[ii]i said diagnosis of the people they represent takes, on average, 3-5 years. The report points out that there needs to be greater awareness of rare neurological conditions in primary care, so people are more quickly referred on for a specialist assessment when they have neurological symptoms.

• ​Faster access to new treatments: the UK often lags behind other countries in Europe when it comes to approving and funding new treatments for rare neurological conditions. For example two associations told the Alliance in our recent survey​:

• Improved mental health support: less than a third of people with rare neurological conditions feel they are getting the mental health care they need according to the Alliance’s 2019 Patient Experience Survey iv. Again, in our more recent survey of September 2020, all 10 charities who responded reported that the mental health needs of those they represent, were either ‘not being very well met’ or were ‘not being met at all’.

• Information should be provided to people with rare neurological conditions and/or their families on diagnosis: again, the Alliance’s Patient Experience Survey 2019 found that just a third of people (or families) with rare neurological conditions are provided with written information about their condition at the time of diagnosis to help them understand more about their condition and care choices.

• ​High quality social care and home adaptations are not just ‘add on extras’ for those that need them: the report points to recent research by the Motor Neurone Disease Association which found that some people with motor neurone disease do not always receive the home adaptations they need before they pass away, due to lengthy delays in service provision and the cost. People with rare neurological conditions, and their families, need proper well-funded support in the community.

“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 hope that this report will bring about a sea change in how rare neurological conditions are viewed, both in the medical profession and in wider society. It’s time that rare neurological conditions came out of the shadows.” Georgina Carr, Chief Executive of the Neurological Alliance

“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.

We hope the findings of this report will give people with rare neurological conditions a voice, influencing decision-makers as we shape the services of the future post Covid. We represent a multitude of unique conditions, yet our journey has shared challenges and we speak together on the need to improve the diagnostic odyssey, access to treatments, awareness and information.” Amanda Mortensen, mother of Livvy and Chief Executive of the Batten Disease Family Association (BFDA

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.
​
Dr Wendy Edwards, Research Manager at the PSPA (Progressive Supranuclear Palsy Association)

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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.

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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.