At the UK Rare Disease Forum meeting on 8 June, the Department of Health pushed through changes to split the UK Rare Disease Forum into two groups.
This means that the current UK Rare Disease Forum, which retains responsibility for implementation of the UK Strategy for Rare Diseases, will meet just once a year. This is clearly insufficient to effectively oversee a Strategy that holds much undelivered potential.
The proposed UK Rare Disease Policy Group, which will meet in place of the current forum three times a year, will be a group that is not a true reflection of the rare disease community; it will be a group without patient representation and external stakeholders with an interest in rare diseases.
The new UK Rare Disease Policy Group’s Task and Finish Groups have been presented as a consolation for the effective disassembly of the multi-stakeholder UK Rare Disease Forum; though, as we have not seen detailed terms of reference for these, we remain sceptical.
We have consulted with Rare Disease UK’s Patient Empowerment Group (PEG), and the rare disease patient community feels disenfranchised by this change. We believe that this move does little to address the most pressing concern related to the Strategy and consider it insulting to the multi-stakeholder community that did so much to drive the creation of the Strategy at the beginning of this process.
We have written to the Minister charged with rare diseases, George Freeman MP, to reconsider the proposed changes to the UK Rare Disease Forum, asking:
- the Department of Health to reconsider its decision to reduce oversight by halting its plans to reconfigure the UK Rare Disease Forum through its current proposals;
- for assurances that future proposals for change will be carried out transparently with patient engagement;
- and that patient voice will be represented in any new formation of the UK Rare Disease Forum and its affiliated groups.
We hope that England will not walk away from an unfinished job. Millions of patients and families affected by rare diseases are relying on the Strategy.
An emergency PEG meeting has been scheduled to take place on 5 July, where officials from the Department of Health in England will come and speak to the group.