As a direct result of the Rare Disease UK campaign and the work of our supporters, the UK Government announced that NHS England and the Department of Health in England would publish plans to implement to UK Strategy for Rare Diseases before the end of the year. Since this announcement, Rare Disease UK has been in contact with both NHS England and the Department of Health in England to ensure development of both plans. We are hopeful that after four years of waiting, patients and families affected by rare conditions in England will finally have a country specific plan that will improve the care and treatment that they receive. England is the only remaining UK country to have not published a country specific plan.
Our Patient Empowerment Group (PEG) has been a key tool in our interactions with both NHS England and the Department of Health. NHS England, which has responsibility for leading on the delivery of approximately 30 commitments in the UK Strategy for Rare Diseases, presented a draft plan to PEG in August 2017. The group had significant concerns as NHS England’s plan suggested that much of the UK Strategy for Rare Diseases would be implemented through existing documents. PEG challenged NHS England and called for evidence that such documents would deliver large parts of the UK Strategy for Rare Diseases.
PEG also raised concerns that ‘patient empowerment’ had not been included as a key objective and disagreed with NHS England’s explanation that this (and its eleven corresponding commitments) would be covered under coordination of care.
PEG was also concerned that the plan would only focus on rare diseases that are ‘severely disabling and effect multi-body systems’, which is a significant reduction in the scope of the UK Strategy for Rare Diseases.
NHS England had hoped to publish its plan as soon as possible without consultation; however, this was postponed because of suggestions from PEG and NHS England’s Patient and Public Voice Assurance Group. PEG felt that the division of responsibility and the decision to produce two separate plans from NHS England and the Department of Health had the potential to reduce the coherence of the implementation plan for England – especially when published months apart. PEG recommended that NHS England delay the publication of its plan and take the time to engage relevant stakeholders and work closely with the Department of Health to ensure synergy between the two plans and to mitigate gaps.
Following the recommendation from PEG we are pleased that NHS England will now coordinate the launch of their plan with that of the Department of Health and look forward to seeing a draft plan from NHS England that responds to the concerns raised.
The Department of Health will publish a plan that covers the remaining 20 commitments in the UK Strategy for Rare Diseases that are not led by NHS England. This will sit alongside the NHS England plan so together they cover the entirety of the UK Strategy for Rare Diseases.
The Department of Health has spoken with PEG on two occasions in their development of their plan. The first in August 2017 and again in November 2017. We are pleased to have had the opportunity to comment on their draft plan — questioning accuracy, requesting additional information, calling for clarity. However, PEG members only had a week to submit comments because of restricted resources and tight timelines at the Department of Health. We would have welcomed a longer period to ensure meaningful engagement.
We are pleased with the commitment and willingness from colleagues within both NHS England and Department of Health in taking forward their responsibility to implement the UK Strategy for Rare Diseases. In particular, we have seen a positive change within the Department of Health in 2017. However, both the plans from NHS England and Department of Health would have benefited from further engagement with all stakeholders with in interest in rare diseases, in particular patients and families affected by rare conditions.