Extract from: We need national debate on rare diseases to offer the best possible care
Speech by Baroness Blackwood at the British Paediatric Surveillance Unit rare disease summer tea party at the Royal College of Paediatrics and Child Health, 10 July 2019
NHS Insert
"Another very exciting initiative I want to share with you is the NHS insert, which I announced in February and the NHS are now implementing. The insert gives NHS England a way to hold providers to account and improve services for rare diseases. I have met with NHS England just this week, who have assured me that the insert has been included and will be monitored through the Quality Surveillance Systems, with trusts reporting on it for the first time this September.
There will be up to 3 criteria providers report on:
- care co-ordination
- an alert card
- transition
Let me explain these each in turn.
Firstly, the provider must ensure that there is a person responsible for co-ordinating the care of any patient with a rare disease. Secondly, the provider must give every patient with a rare disease an ‘alert card’. This will include information about their condition, treatment regime and contact details for the individual expert involved in their care. Finally, the provider must ensure that every child has an active transition to an appropriate adult service, even if that adult service is not the commissioning responsibility of NHS England."
See
Implementation Plan for the UK Strategy for Rare Diseases, NHS England January 2018
"We will develop [2017/18] and implement [2018/19] a rare disease ‘insert’. This will be a set of criteria that will sit alongside those NHS England service specifications (see enablers) for services that treat patients with rare diseases. "
