At the recent Rare Disease Day Westminster reception, hosted by Rare Disease UK, Baroness Nicola Blackwood, Minister for Rare Diseases made the following announcement:
‘On the issue of care coordination I have asked NHS England to implement a rare disease “insert” from April 2019. This refers to a set of provider criteria to sit alongside NHS England specifications for services treating patients with rare diseases and allows NHS England to hold providers to account for the way in which they treat patients with rare diseases.
There will be up to 3 criteria (depending on the nature of the service):
- ensure there is a person responsible for coordinating the care of any patients with rare diseases
- give every patient with a rare disease an ‘alert card’, including information about their condition, treatment regime and contact details for the individual expert involved in their care
- ensure that every paediatric patient has an active transition to an appropriate adult service, even if that adult service is not the commissioning responsibility of NHS England
I hope that this will make a real difference for patients on the ground. I will be keeping a close eye on whether it does.’
This is great news, though versions of this proposal have been announced as long ago as 2016.
To explain some of the details behind the announcement, and answer your questions surrounding it, we hosted a policy webinar. We were joined by Fiona Marley, Head of Highly Specialised Commissioning at NHS England, who will deliver a presentation and then take your questions. Nick Meade, our Directory of Policy, will be moderating the Q&A session.
This webinar was open to Genetic Alliance UK members and Rare Disease UK supporters, and a recording is available for replay below for Genetic Alliance UK members.