Patient Empowerment Group calls for coordination in England

Rare Disease UK’s Patient Empowerment Group (PEG), an expert group of patients and patient organisations with an interest in rare diseases, is calling on the Department of Health to coordinate the implementation of the UK Strategy for Rare Diseases in England.

In a meeting in June, the group expressed their concerns about the lack of implementation and the absence of a coordinated implementation plan in England.

A 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. More than two years later, patients affected by rare diseases in England do not have a plan detailing how this valuable Strategy will be implemented.

The departments of health in Scotland, Wales and Northern Ireland have all acted on their responsibility to coordinate activities to implement the Strategy. The Department of Health in England instead appointed NHS England as the lead body charged with coordinating the 51 commitments in England. It is clear now more than ever that this was an incorrect decision: NHS England’s role in implementation is too narrow.

PEG members acknowledge that there has been some progress in implementing some of the recommendations in the Strategy in England, but even here we see a series of missed opportunities. Initiatives such as the 100,000 Genomes Project and the emerging National Congenital Anomalies and Rare Disease Registration Service are exciting, but without oversight and coordination these activities are not linked well enough with other key bodies charged with implementing the Strategy, such as NHS England, NICE, Health Education England, the National Institute for Health Research and the UK Genetic Testing Network.

The group believes the responsibility to coordinate activities in England lies with the Department of Health. Furthermore, PEG is calling for an oversight group for implementation in England.

We have written to the Minister in charge of rare diseases, George Freeman MP, to ensure that the Department of Health fulfils its responsibility to implement the UK Strategy for Rare Diseases in England.

We asked for:

  • a commitment from the Department of Health to develop an implementation plan for the Strategy in England;
  • a commitment from the Department of Health to coordinate activities to implement the Strategy in England by the establishment of an implementation oversight group;
  • and a commitment from the Department of Health to work with the other devolved nations of the UK to ensure collaborative working in implementation of the Strategy.

We have already lost two valuable years and we must ensure England does not miss any more opportunities to improve the lives of millions of people affected by rare diseases in England.

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