On Wednesday 3rd November, Mark Isherwood MS submitted a plenary question to the Senedd asking “How is the Welsh Government supporting people with autoimmune diseases?” (OQ57098). Mr Isherwood, who is Chair of the Cross Party Group (CPG) for Disability, followed up with a longer question referencing FTWW’s report, Making the Case for Better Lupus and Rare Autoimmune Disease Care, which you can watch here:
Patients with diseases like #lupus, #vasculitis, #Sjögren‘s and #scleroderma are missing out on better care in Wales.@MarkIsherwood is right to ask the Welsh Government to improve care for patients living with these conditons. pic.twitter.com/yz6pN28MzD
— RAIRDA (@RAIRDA_org) November 8, 2021
The Health Minister, Eluned Morgan MS, responded as follows: “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.”
Here is our response to the Health Minister’s statement:
‘FTWW’s concern is that this approach continues to side-line patients’ own views about their healthcare needs which is not in line with the principles of shared decision-making – a process now recommended by NICE guidelines to which Wales has signed-up. It’s vital that our voices are heard so that service providers can learn from patients’ experiences and ensure efficient, effective, person-centred care.
‘The apparent reluctance to invest in specialist multi-disciplinary centres, much like those successfully developed by LUPUS UK in England, comes up time and time again with regard to the various conditions with which our members live and on which we campaign. Our research tells us that specialist clinics are exactly what patients want and that they are willing to travel to them. Technological advances mean that day-to-day monitoring and treatments can be provided with the support of local professionals so this is an approach we would like to see providers explore further.
We note the Minister’s hope that clinicians will work with organisations like FTWW and LUPUS UK on future developments. We would like a firm commitment to this, not least so we can continue to convey our members’ preferences for specialist multi-disciplinary clinics – we consider anything less a step backwards in terms of research, innovation, and will continue to campaign to this effect’.
You can watch the full exchange below, and we’ve also provided a transcription.
Mark Isherwood MS: “How is the Welsh Government supporting people with autoimmune diseases?”
Eluned Morgan MS: “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.”
Mark Isherwood MS: “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?”
Eluned Morgan MS: “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.”
Cymraeg 
English (UK)