Patient Empowerment Group: March 2019

UK Strategy for Rare Diseases

On Wednesday 27 March, PEG members discussed the Department of Health and Social Care’s (DHSC) ‘2019 update to the Implementation Plan for England’. The group agreed the document was a progress report of the first year of implementation rather than an update of the plan itself.

PEG members reaffirmed their view that a review and refresh of the UK Strategy for Rare Diseases is vital in order to improve the care and treatment of rare disease patients post 2020 (the deadline for implementation of the Strategy).

At the Rare Disease Day reception, Baroness Blackwood gave the assurance that she is committed to monitoring the impact of the soon to be published Rare Disease Insert. The insert will be a single document attached to every highly specialised service specification in England, and will be split into three pillars: for every individual to have a care coordinator, to deliver an alert card, and support transition from paediatric to adult services. In regards to the alert card, PEG discussed what this might look like, and how all the necessary information could be included. Members suggested that Rare Disease UK look at existing examples of alert cards produced by patient organisations, and the impact they can have on accessing emergency care for rare disease patients.

Rare Disease Day

Rare Disease UK provided members of PEG with an update of the 2019 Rare Disease Day activities across the UK.

Genomic Medicine Service, NHS England

Ahead of the launch of the Genomic Medicine Service, representatives from NHS England presented draft patient information on genetic testing for consultation from PEG.

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