In January 2018, 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. The plans were designed to work in parallel to improve care and treatment for people living with rare diseases in England.
To mark Rare Disease Day 2019, the DHSC has published an update on activity undertaken in the past year to address the five themes in the UK Strategy for Rare Diseases. Although NHS England contributed to this progress report, it does not provide an update to the twin implementation plan to be delivered by NHS England. Rare Disease UK raised concerns during the development of the plans, and at the time of publication, that two separate documents posed a challenge for their delivery and monitoring. While the progress update from the DHSC is welcome, it only paints part of the rare disease picture in England.
The update from the DHSC brings to light the work of the National Congenital Anomaly and Rare Disease Registration Service, the UK National Screening Committee, Health Education England and the National Institute for Health Research. You can read the full update here. However, there is little information detailing the progress made by NHS England.
The document was launched by Baroness Nicola Blackwood at the Rare Disease UK parliamentary reception to mark Rare Disease Day. We are pleased that Baroness Blackwood reaffirmed the Government’s commitment to prioritise the UK’s involvement in European Reference Networks post Brexit: ‘I want to stress the government is a strong supporter of the European Reference Networks (ERNs). We are keen to agree a future relationship with the EU that includes continued participation in the ERNs. We have made this position clear to the European Commission. In return, the European Commission have shown that they recognise the significant expertise of UK clinicians. Both sides appreciate the importance of maintaining UK participation’.
Over 100 patient organisations have added their logo to our open letter, calling on the Government to urgently review and refresh the UK Strategy for Rare Diseases before the end of 2020. While we welcome the comments from Baroness Nicola Blackwood, who assured attendees at the reception that ‘….post 2020, there will be an overarching framework to improve the lives of all those living with rare conditions’ and that the Minister is ‘…personally committed to ensure that the rare disease community are closely involved’ we will be seeking a firm commitment from Government that a review and refresh of the UK Strategy for Rare Diseases will take place.
Dr Jayne Spink, Chair of Rare Disease UK and Chief Executive of Genetic Alliance UK, said ‘We welcome this progress update from Department of Health and Social Care. However, since many of the recommendations of the UK Strategy for Rare Diseases fall to NHS England to implement, the report does not give a comprehensive picture. Nonetheless, the Department of Health and Social Care progress report demonstrates the scale of change over the past six years – fundamental changes that will increasingly affect the NHS and prospects for people affected by rare diseases. The case for urgently reviewing and updating the UK Strategy for Rare Disease is compelling – before its end date in 2020’.