Grŵp Trawsbleidiol ar Glefydiau Seliag a Dermatitis Herpetiformis

Cross Party Group on Coeliac Disease & Dermatitis Herpetiformis

Date & time: Wednesday, 12 March 2025, 10:45-11:30

Venue: Zoom

Attendees: Rhun ap Iorwerth – Chair (RaI), Tristan Humphreys – Secretary/Coeliac UK (TH), Fiona Newsome (FN), Mark Isherwood (MI), Gwawr James (GJ), Ian Severn (IS), Sian Evans (SE), Ellie Wilson (EW), Burcu Borysik (BB)

No.	Item
1	Apologies for absence: Ieuan Davies, Richard Cousins, Graham Phillips, Chloe Hutchinson, Claire Constantinou
2	Minutes of last meeting The minutes of the last meeting were approved.
3	AGM a. Election of officers RaI was re-elected chair of the group (Nominated via proxy, orally and by email – Russel George, Peredur Owen-Griffiths, Mark Isherwood) Coeliac UK (CUK) was re-elected as secretary of group (Nominated: Russel George, Peredur Owen-Griffiths, Mark Isherwood). b. Approval of Financial Statement Approval of the financial statement will follow the CPG meeting.
4	Awareness Month 2025 a. Y Farchnad TH gave an update on the awareness month campaign which will run for the whole month of May with a focus on diagnosis and common symptoms of coeliac disease. There will also be community activity which will involve fundraising around the 64% undiagnosed. Events taking place in Stormont in Northern Ireland and marketplace event in the Senedd. MSs can drop by to chat about coeliac disease. b. Senedd Activity TH asked what parliamentary activity we could do to highlight awareness month. RaI advised quick messaging around the marketplace event (30 secs on CD) and sharp elevator pitch and pamphlet. RaI said potential for a statement of opinion and some written questions if CUK could think of some relevant questions. TH and RaI office to collaborate on that. c. Cardiff Event IS gave an update on the Cardiff local group event during awareness month, which will be hosted at ASDA community room Cardiff Bay on 17 May. IS asked if there was anyone in the group who may be able to come to speak. It was agreed that the information of the event would be shared with the group.
5	Petition hand in update TH gave an update on the cost of living campaign and a petition around new guidance, petition very succesful and there are over 20,000 signatures. TH informed the group that there would be a rally, petition hand in and reception in House of Lords.
6	Gluten free subsidy scheme/Hywel Dda update FN gave an update on Cardiff University’s research looking at the impact on the scheme. Overall, it has had a positive impact, and the report suggested places for improvements.  Welsh Government had been considering the long-term options for making gluten free foods available for citizens with coeliac disease in Wales and are currently in the process of obtaining approval from the Cabinet Secretary for Health and Social Care in regard to the next steps. FN reminded the group that they had decided to write a letter to Welsh Government at the last meeting about the progress, prescriptions access and process of level and inflationary effects. CUK is drafting but agreed it was important to send soon.
7	The cessation of coeliac services in Wrexham TH gave an update about query to CUK about concerns that services are being cut in Wrexham due to limited dietetic resources and finances. TH emphasised the importance of dietetic support for people with coeliac disease. He mentioned the lack of annual reviews for some people and that changes to the BGS guidance are anticipated later this year. GJ expressed that she was also having issues with diabetes dietitians in Wrexham and asked whether it was specific to Betsi Cadwaladr or Wrexham. TH said it is a problem all over. SE mentioned that in Cardiff, in paediatrics, dietitians support gastroenterologists as they can support as well as diagnose, but when they transition to adult care, these dietitians are not able to support in the same way and this appears to be happening all over, there is a lack of resources/funding/time. EW mentioned that there are so many pressures that it would be difficult for annual reviews to take place in primary care but said that some health boards were still conducting them regularly in secondary care. RaI suggested that the group should write to Betsi Cadwaladr to get a deeper understanding of what is going on and whether there is a different way it could be done. He also mentioned that CUK could look at mapping out a new model that would be sustainable and what could work given all the pressures. GJ asked if it was worth writing to Welsh Dietetic Leaders Advisory Group (WDLAG) about what is going on and agreed to share details.
8	AOB IS asked about the Royal Welsh Show and TH said that the CUK membership team were still waiting for an update.
9	Dates for future meetings RaI said a date would be circulated closer to the time.

Actions	Member
Circulate minutes and potential dates for next meeting	FN/TH
Share information on Cardiff local group AM event	FN
Send letter to Welsh Government about gluten free prescribing	TH/FN
Send letter to Betsi Cadwaladr about dietetic services	FN/TH
Share contacts for WDLAG	GJ
Get in touch with WDLAG about dietetic services	FN/TH