On Tuesday evening (17^th September), we took another step on our government campaigning journey with a reception held at the Scottish Parliament in Holyrood, Edinburgh.

The event was another opportunity to raise awareness of EB and to garner support from the MSPs in attendance. Our specific asks of them were to support us in raising awareness of EB within their constituencies both to aid diagnosis of all types of EB and referral to specialist EB healthcare services, and to raise awareness of the support that is available for the entire EB community through DEBRA UK. We also requested their support to ensure that people living with all types of EB within their constituencies can access the specialist healthcare services they need locally.

Speeches on the night included a powerful first-hand account of the challenges of living with dominant dystrophic epidermolysis bullosa from DEBRA UK member, Lisa Irvine, and a speech from Jenni Minto, Minister for Public Health and Women’s Health who urged DEBRA UK to seek funding from the Scottish government. In her speech Jenni said:

We have a new financial year coming up and we know the situation is challenging on the public purse but one of the things I want to do as a parliamentarian is ensure when monies are distributed that DEBRA UK finds themselves in a position where they can bid for those funds to try to win research budgets.

Other speeches on the night included an update from Professor Gareth Inman about the project that DEBRA UK is funding with the Cancer Research UK Scotland Institute that seeks to develop pre-clinical cancer models that will help increase understanding around the progression of skin cancer in patients living with recessive dystrophic epidermolysis bullosa. With better understanding it is hoped that this will aid the identification of potential drug treatments.

DEBRA UK’s new ambassador, ex-Scotland international and Celtic midfielder and current Ayr United manager, Scott Brown, also shared his frustrations about the lack of awareness and dedicated healthcare support for the EB community in Scotland. In his speech, Scott said:

There is still a lack of awareness out there, unfortunately there are a lot of doctors who don’t even know what EB is. There is not enough being done for EB patients. With only one centre in Glasgow for the whole of Scotland I can’t imagine how much it is costing people to come all the way down to Glasgow, especially during the cost-of-living crisis. The health aspect of EB is huge. It’s not just the physical side of the condition, it’s also the emotional side, it is being stuck in the house 24/7 and being reliant on your parents to do a lot for you.

We would like to thank all our members and the MSPs who joined us in Holyrood, our speakers on the night including the Health Minister, Jenni Minto, and particular thanks to Bob Dorris, MSP for Maryhill and Springburn for kindly sponsoring and hosting this important event on our behalf.

You can get involved and support our government campaigning too by writing to your MP, MS, or MSP.

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