NEWS: Government announces implementation plan for the UK Strategy for Rare Diseases

The Minister of State for Health, Philip Dunne MP, has announced that NHS England will develop an implementation plan by the end of the year for the commitments outlined in the UK Strategy for Rare Diseases.

For those affected by Inherited Metabolic Disorders in England this is a fantastic result and ensures that the Government will be accountable for the delivery of improves services and patient care.

A debate on the implementation of the UK Strategy for Rare Diseases took place at the House of Commons on 28th March 2017.  Ben Howlett MP, chair of the All Party Parliamentary Group (APPG) for Rare, Genetic and Undiagnosed conditions introduced the debate, which was attended by a number of MPs representing patients from across the UK.

  • 3.5 million people in the UK will be affected by rare disease at some point in their life.  Despite the enormity of the issue, a significant proportion of these patients do not have access to the right care and treatment.
  • The UK Strategy for Rare Diseases was published in 2013 and was the first time all four health departments of the UK came together to recognise and respond to the needs of all those affected by rare diseases.  The aim of the Strategy is to ‘ensure no one gets left behind just because they have a rare disease’.
  • The Strategy contains 51 commitments to ensure that health and social care systems across the four nations provide those living with rare conditions with the highest possible quality of evidence-based care and treatment, regardless of where they live in the UK.   The first step in delivering the 51 commitments was the promise that each UK nation would publish their own national plans by the end of February 2014.
  • While implementation plans have been developed in Scotland, Wales and Northern Ireland, over three years later, patients affected by rare diseases in England do not have a plan detailing how this valuable Strategy will be implemented.

Responding to the debate, Philip Dunne MP stated:

“I can confirm to the House that I have agreed with the Chief Executive of NHS England that by the end of this year he will deliver an implementation plan for those of the 51 commitments of the UK strategy for rare diseases for which NHS England has lead responsibility. For those commitments that fall outside NHS England’s remit, the Department will work collaboratively across stakeholders to contribute to the implementation plan.”

As part of the Patient Empowerment Group, established by Rare Disease UK, Climb will continue to ensure that the patient voice is properly informed and effectively represented in the implementation of the UK Strategy for Rare Diseases.