North Wales MS Mark Isherwood has urged the Welsh Government to respond to calls for improved care for those living with Lupus and Rare Autoimmune Rheumatic Diseases.
Speaking during Wednesday’s meeting of the Welsh Parliament, Mr Isherwood highlighted problems Lupus patients in Wales are experiencing because of the lack of specialist care for the incurable immune system illness and asked what action, if any, is being taken to improve care for patients with these conditions.
He said:
“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 Diseases, 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?”
The Minister Eluned Morgan replied:
“We have 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.”
