4. How is the Welsh Government supporting people with autoimmune diseases? OQ57098

Thank you very much. There are more than 100 autoimmune diseases and the Welsh Government’s support for these conditions is set out in a range of delivery plans, strategies and through the development of quality statements.

Diolch. During Lupus Awareness Month last month, the Rare Autoimmune Rheumatic Disease Alliance published the experience of a person diagnosed with lupus during childhood, who stated that, in England, 'Regular monitoring and open communication' kept her lupus and her own stress about her health well under control. She also stated, however, that when she moved to Wales she couldn't find a lupus specialist team nor was she allowed to remain under the care of the team in England. She added her nephritis came back, being referred to see a nephrologist was difficult even though she had kidney damage, and she doesn't have a telephone advice line or lupus nurse to contact about issues that arise at short notice. Fair Treatment for the Women of Wales also published a new report last week, stating, 

'there are no specialist Lupus Centres of Excellence in Wales, and most patients have their referral requests to centres in England refused.'

How do you therefore respond to their calls on the Welsh Government to improve care for patients living with lupus and rare autoimmune rheumatic conditions, and to the Rare Autoimmune Rheumatic Disease Alliance's call for a properly commissioned specialist centre for rare autoimmune rheumatic diseases in Wales supporting local hospitals to deliver better care?

Thank you very much. I'm aware that many people who suffer with autoimmune diseases suffer from immense pain as well, and so it is important that we pay attention to this. We have, however, engaged with the medical professional community and they've consistently advised that there is no requirement for lupus centres of excellence. But, what we have done and we're in the process of doing is we're recruiting national clinical lead roles for the development of a musculoskeletal framework and the development of pain services, and we have appointed a national clinical lead for inflammatory bowel disease, and they will be leading service change. So, what I'm hoping will happen is that, when those clinical leads will be appointed, they will engage with the third sector and with the Fair Treatment for the Women of Wales and lupus campaign.