England Rare Conditions Action Plan falls short on mental health

The Department of Health and Social Care have published the first Rare Diseases Action Plan for England, coinciding with Rare Disease Day on Monday 28 February 2022. The plan sets out the Government’s plans to improve the speed of diagnosis, access to genetic testing and how they assess access to medicines for rare conditions.

The Action Plan follows the publication of the  UK Rare Diseases Framework in January 2021 with similar plans also being developed in Scotland, Wales and Northern Ireland.

New assessments for undiagnosed conditions

Rare neurological conditions affect at least 150,000 people in England. Our 2018/19 Patient Experience Survey and subsequent Out of the Shadows report highlighted significant gaps in care for many people in this group, with many people with rare conditions often reporting worse experiences compared with those living with more prevalent conditions.

The Action Plan sets out sixteen actions for the year ahead, designed to deliver on the priority areas set out in the Rare Diseases Framework. The action points include piloting new approaches to  assessment of undiagnosed conditions by multiple clinicians through more targeted adult neurology clinics, or through a one-stop paediatric clinic for children. Pilot approaches will be developed in April 2022 with sites selected in the summer.

The plan also includes a welcome commitment to improve education and training frameworks for healthcare professionals, action which will be led by Health Education England.

Mental health and wellbeing absent

Georgina Carr, Chief Executive of The Neurological Alliance, said:

“We welcome this important step forward from the Rare Disease Framework to implementation, which we hope will bring real benefit to the thousands of people throughout the country living with a rare or undiagnosed neurological condition.

“We are disappointed that actions to improve access to mental health support are absent from the plan. At the end of last year, a snapshot survey of people with neurological conditions showed that nearly 4 in 10 felt anxious and/or hopeless.

The pandemic has taken a huge toll on the mental health of people with neurological conditions. The Government must bring forward ambitious plans to ensure people with neurological conditions access the mental, emotional and cognitive support they need”.

What next?

We will publish results from My Neuro Survey in June, which will provide further insight into the experiences of people with rare neurological conditions.

We will work with our rare condition members through our Rare Conditions Subgroup to provide a collective voice for the rare neurological conditions community. While the action plan sets out some welcome next steps to deliver on the UK Rare Disease Framework and to address some of the recommendations made in our Out of the Shadows report it is hard not to mourn a missed opportunity to improve mental health support.