DEBRA SLT members visit Scottish parliament

We took a further step on our government campaigning journey today (Wednesday 22nd November) with a meeting held at the Scottish parliament with Jennie Minto MSP for Argyll and Bute and Minister for Public Health and Women's Health in Scotland, and our meeting sponsor, Bob Dorris, MSP for Glasgow Maryhill and Springburn.

The meeting attended by DEBRA Chair of Trustees, Jim Irvine, CEO, Tony Byrne, and Director of Research, Dr Sagair Hussain explored several topics including the need to establish an EB population register using the data held within NHS Scotland in a similar way to what we are doing with NHS England, so that eventually we have data that covers the entire UK EB population.

Feedback from the EB insights study was also shared in the meeting including the difficulties that some members of the EB community face in attending the existing NHS EB healthcare centres of excellence due to their location in the south of the UK, and the need to improve the healthcare provision available to people with all types of EB in Scotland including offering enhanced services through the Office for Rare Conditions in Glasgow.

The team from DEBRA spoke about our drug repurposing programme and the minister provided some helpful guidance on who we need to liaise with within the NHS to help accelerate this, as well as recommending that we join a rare disease all-party parliamentary group and presenting to the Scottish Rare Disease Implementation Board.

We very much appreciate the time given by both the minister and our sponsor, and we will follow up on their recommendations as we seek to ensure that the entire EB community in Scotland gets the care and support and access to specialist EB healthcare they need.