Part of 2. Questions to the Minister for Health and Social Services – in the Senedd at 2:52 pm on 3 November 2021.
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?