14 March 2019
Our Parliamentary Affairs Officer attended Rare Disease UK’s Annual Reception to celebrate Rare Disease Day. Rare disease patients and their families are invited to join politicians and other stakeholders in the rare disease community to mark Rare Disease Day 2019, officially held on 28 February.
The event was marked by Baroness Nicola Blackwood, the Parliamentary Under Secretary of State at the Department of Health and Social Care, who alongside the Department of Health and Social Care (DHSC) and NHS England published implementation plans to deliver the 51 commitments in the UK Strategy for Rare Diseases.
Importantly for rheumatologists in England, NHS England signalled its intention to implement a rare disease ‘insert’ from April 2019, which will be a set of criteria that will sit alongside NHS England service specifications for services that treat patients with rare diseases. These criteria will allow NHS England to hold providers to account for the way in which they treat patients with rare diseases. There will be up to three criteria in the insert (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.
This could significantly improve coordination of care for conditions such as lupus, scleroderma and Sjögren’s, all of which fall under the care of rheumatology MDTs.