Implementation plans for England published

The Department of Health and Social Care and NHS England have published their plans to implement the UK Strategy for Rare Diseases.

We are pleased that the Department of Health and Social Care and NHS England have published plans detailing how they will implement the UK Strategy for Rare Diseases – four years on from its publication. This is promising news for the 3 million people who will be affected by a rare condition at some point in their lives in England.  Administrations in Scotland, Wales and Northern Ireland have all developed plans to implement the UK Strategy for Rare Diseases. Publication of the England implementation plans has come about as a direct result of Rare Disease UK’s campaign.

The plans from the Department of Health and Social Care and NHS England detail how the two bodies will work in parallel to ensure that:

  • those living with rare conditions have access to high quality care and treatment. In particular, the plans seek to improve care coordination. If successful, this will mean more families will have access to ‘a continued point of contact’ that can help manage hospital appointments and provide emotional and practical support.
  • facilitate earlier diagnosis, reducing the time that patients and families have to spend bouncing from one healthcare professional to another. A correct diagnosis can open the door to appropriate treatment and access to the right support.
  • research into rare diseases is strengthened and incentivised. Research is a vital tool for increasing knowledge and availability of treatment options for patients with a rare disease.

The decision to deliver two separate plans poses a challenge for their delivery and monitoring. We will be following initial delivery of these plans closely to assess how the plans connect with each other, looking for gaps and overlaps.

The All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions  inquiry into the implementation of the UK Strategy for Rare Diseases was a key turning point our campaign. Following the publication of the APPG’s report Leaving No One Behind: Why England needs an implementation plan for the UK Strategy for Rare Diseases and a Westminster Hall Debate on the issue, we secured ministerial guarantee that plans for England would finally be delivered.

Rare Disease UK’s Patient Empowerment Group has also played a vital role in the development of both plans. The group will continue to work to monitor progress and implementation to ensure that progress is not just made at a policy level, but that patients and families see improvement in their care and treatment.

Dr Jayne Spink, Chair of Rare Disease UK: “We are grateful to all our supporters who have worked with us to highlight the importance of developing an implementation plan for England and we warmly welcome the publication of implementation plans by Department of Health and Social Care and NHS England.  Looking to the future we are keen to see a greater degree of collaboration across the four nations in terms of delivery and to a time when we can see their demonstrable positive impact for patients and their families.”

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