In September 2023, LUPUS UK conducted an inspection of the Kellgren Centre at Manchester Royal Infirmary and are very pleased to conclude it should retain the LUPUS UK Centre of Excellence award.
You can read the full inspection report, including how it met our criteria and what we recommended for improvements, on this page of our website in the Kellgren Centre section: lupusuk.org.uk/centres-of-e...
It would be really interesting to know which Centres of Excellence treat UCTD patients. Some Centre of Excellence websites include UCTD in their webpage list, others don't .
If these patients have symptoms of Lupus but have not positive bloods, they might have been diagnosed with sero negative lupus in the past.
So many of us UCTDers are having to go private for help.
At my local NHS hospital, I was told I did not have autoimmune disease as I walked into the room, before even discussing symptoms. They had blood results from my GP. (This just kept being said again and again throughout. It was obvious the doctor did not think I should have been referred and my life was aweful because they symptoms I had.)
I can only conclude that the 2019 SLE criteria, intended for research, had been adopted for diagnosis also, meaning caseloads could be restricted - based on bloods.
In their GP letter they added UCTD was too difficult for them to diagnose.
I got discharged.
ncbi.nlm.nih.gov/core/lw/2....
My strong ANA and many lupus symptoms were not sufficient for me to be taken seriously, without an anti dsDNA/ Sm or equivalent. Meaning kidneys would have to be affected to score the required 10 (Joints etc only score 6, only one symptom is considered).
I hope it is different in the Centres of Excellence. However, no inspection question covers UCTD, or asks rheumatology departments to make it clear on their websites that they standardly treat UCTD patients.
(This means including "UCTD" on their website list, not just referring to "Connective Tissue Disorders" as this can include or not include UCTD depending on how they feel. The hospital I went to included the wider term but it was obvious they were not interested, even saying UCTD was too difficult to diagnose).
I'm sure Centres of Excellence offer more comprehensive care, but might it be possible to include a criterion in the survey to check this.
There are a lot of us, and maybe some of our GPs, who might be very grateful. Thanks 😊
Hi StriatedCaracara
Sorry for the delay in getting back to you, I wanted to check this out with the team as I'm not involved in the Centre of Excellence scheme.
You are correct that there isn't anything in the criteria that relates specifically to UCTD or MCTD. As these conditions can vary a lot in presentation, which clinic sees people with UCTD/MCTD may depend on whether the person's individual case presents most like lupus, rheumatoid arthritis or systemic sclerosis.
A LUPUS UK Centre of Excellence may be better suited to providing good quality care for people with UCTD/MCTD, as these centres will see more people with suspected lupus and so should have experience in accurately diagnosing and effectively managing these diseases. However, there are also Centres of Excellence for other rheumatic diseases, which may or may not be in the same hospitals as our Lupus Centres of Excellence. If someone has UCTD which presents most like systemic sclerosis or Bechet's, for example, rather than lupus, it may be worth trying to get a referral to a centre recognised for having a specialist interest in those diseases.
I hope that's helpful to you, but let me know if you have any other questions.
Take care,
Debbie
Possible specialist lupus centre at Aberdeen Royal Infirmary?
SEASON’S GREETINGS from LUPUS UK
London lupus centre
Dr Bickerstaff -London lupus centre
