SLE. Rheumatology led care or dermatology led care?

[Wendy39]

If you have SLE, which discipline leads your care?

[johare]

Hi Wendy, Ive never seen a Dermatologist despite having a rash all of the time across my face chest and back. The Rheumy has always led my care.

[Paul_Howard Partner LUPUS UK]

Hi Wendy39 ,

In most cases a rheumatologist would lead the care in cases of SLE, but this may not be the case for everyone. Due to the varied presentation of lupus the lead consultant could be different in cases that present primarily with symptoms of another specialty such as dermatology, neurology or nephrology. It is possible that over time, if symptoms change or new symptoms develop a different consultant could take primary responsibility.

[Wendy39 in reply to Paul_Howard]

Thanks Paul. I think ultimately my frustrations with being on Dermy led care is that this is the GP With A Specialist Interest in Skin - who at my 2 appointments so far has proved he knows nothing about lupus whatsoever. He just smiles inanely at me and offers no real advice. After my last big flare, I saw him and told him how poorly I'd been, he sent me on my way with a cream. No advice on flares. No comments on my horrendous 6 week headache. I told him I'd considered A&E and he still never actually gave me any advice on what to do if it happened again. No refer to explore my headaches which have been all my adult life. So this is the man leading my care. I guess I just don't feel I can trust him. He certainly does not coordinate my care. And that is why I went to London privately. But if things go wrong at home, in between London appointments, I wouldn't know what would happen to be honest. I know I am not the only one in my position but I just find it difficult to accept in this day and age. Thanks for replying. Wendy

[Tonk]

The Rheumatology department leads my care for my SLE. They liaise with ENT, cardiology, physiotherapy, occupational Therapy, my GP, the DAWN Monitoring team, pathology and a whole host of others, all of whom have been involved in the management, diagnosis, investigation and treatment of my multi faceted medical condition.

Modern healthcare within the UK, tends to use the Multi Disciplinary Team approach where, each patient has a named primary care clinician or responsible medical officer who acts as their main point of contact with and overseer, of their care team. This primary care person will arrange all referrals to other departments and practitioners and will, in theory, keep the patient informed and the patient's GP up to date. All communications, test results and care plan decisions will go through this lead clinician. I retired from healthcare over a decade ago now, but at that time the MDT and CPA (care plan approach) to patient care and management was already fairly well established.

[Barnclown]

Good question

I can only speak from my own experience in the part of GB I've lived in for 40 years.

As you know, I spent 40 years in the diagnostic wilderness being investigated, diagnosed & treated for all sorts of multisystem secondaries + emergencies. During that time, I conscientiously followed the advice of my gp. I tended to be dealt with by various hospital clinics & then discharged back to my gp's care. For me, this was a miserable era of progressive multisystem debilitation.

6 years ago when I first was taken into care by rheumatology and begun on meds for what has turned out to be infant onset SLE , I innocently assumed rheumatology would lead my care. But, right from the start, my rheumatologist emphasised that although lupus is a multisystem condition (systemic) it isn't necessarily responsible for, or even significantly involved in, every aspect of my health.

At that time, we were unaware my case combined the infant onset SLE with early onset hypogammaglobulinaemia (a Primary Immunodeficiency which is also systemic). But, 4 years into the diagnostic & treatment process, my chief rheumatologist did refer me to immunology due to sinister bone marrow blood results. Now my 2 most fundamentally important clinics (whose treatment plans are making the greatest pos diff to my quality of life) are immunology & rheumatology

But I cannot say I find either of these clinics actively leads my care. Instead i'd say I lead my care. Aside from that immunology referral, I'm the one who has had to proactively research & understand all my multisystem signs & symptoms thoroughly enough to be able to confidently insist on the referrals I've needed over the past 6 years since rheumatology took me on. My gp is my standard source of referrals. Once a new clinic has taken me on, I coordinate all the treatment that clinic prescribes direct with the dispensary at my home surgery. Over the years, there is one gp I've seen most at my surgery, but getting an appt with her involves waiting many weeks. If I need fast action, I can arrange a fairly prompt phone call from her. Likewise, I can talk to my lupus specialist nurse fairly promptly on the phone and she v helpfully gets my rheumatologist's view if necessary. Likewise immunology has a specialist nurse. But I am always the "hub" leading my care generally, I.e. I am my own patient advocate...and without this wonderful forum I'd probably not be able to cope with this difficult & demanding role

Over the decades, I've only once come close to the Multidiscipline approach Tonk mentions (this has been during the current protracted 20+ month investigations into my abdo/Pelvic flare)...and I was totally gobsmacked to discover MDTs exist in the NHS. now my impression is that MDTs rev into action most commonly in high profile illnesses like cancer....and maybe diabetes. E.g. back when my lupus was rediagnosed in 2011, I endured 2 years of nightmare investigations & treatment into osteomyelitis in my upper jawbone...now I realise this should've been managed by a MDT...instead I had to coordinate treatment between several different clinics myself: ENT + Maxillofacial facial + oral surgery. Of course, immunology should've been involved too, but at that point the system hadn't spotted my chronic Immunodeficiency.

Currently I'm coordinating my care at the BIG handful of hospital clinics I regularly attend. My gp surgery has told me that my case is too complex for them to keep track of all this. It is what it is

Apologies for going on at such length. But this subject is close to my ❤️. Am v glad you've brought it up

🍀😘🍀😘 coco

[Wendy39 in reply to Barnclown]

Thank you for replying. It is an interesting subject. I think it depends on the hospital you are under and the Health Board's policy - and the country you are in. I know someone with lupus locally who has never been under the same local hospital as me - she was referred to a big teaching hospital in Cardiff and has a MDT there with immunology, dermatology and rheumatology. But I have never heard of this approach locally for lupus patients. Like you, I think it will be me taking the reins. Which is OK when you are able to, but what if you get so poorly that you cannot do that? That you cannot advocate for yourself? I'm lucky to have my husband who would fight my corner but what about others who don't have such support. It all seems very hit and miss. Such a shame, as it adds to dealing with the illness itself. I hope you are having a good morning. xx

[Barnclown in reply to Wendy39]

Exactly!

I tell each of the consultants at the hospital clinics I attend regularly: if my daily combined therapy lupus meds weren't helping as much as they are, I wouldn't be able to "present" my case in clinic as effectively as I now can & do...and just to stress my point, I tell these consultants: i.e. I wouldn't be capable of stringing words together comprehensibly.

This is not an exaggeration. For years before my lupus was recognised & treated I was mostly a mumbling, bleary eyed zombie.

I'm ok thanks, dear...only thing is: just got home from a week away to discover a computerised letter saying my Aug rheumatology appt is moved on to Feb 2018....SHEESH: gotta phone our specialist nurse & get this sorted out 🤷‍♀️

💐❤️🍀

[Wendy39 in reply to Barnclown]

Wow! From August to Feb? 6 months later. That's not good. X

[Barnclown in reply to Wendy39]

Yep: this date is a year on from my last clinic appt with the chief...she insisted on seeing me again in August....am doing my best not to overreact....😂😂😂😂....YET....it's probably a computer screw up

[Wendy39 in reply to Barnclown]

Yes, let's hope you are right. X

[Barnclown in reply to Wendy39]

Am ready for anything....we need to be,...🤷‍♀️

[Barnclown]

👍👍👍👍 it's the BEST...and an August date was key for me & her because she is advising me to have iloprost infusions for my simultaneous raynauds & erythromelalgia...which ideally should start before autumn grows colder...

Thanks Lou

🍀😘

[Wendy39]

I'm so sorry to hear that Louise-a. How are you now? Did you end up in hospital? Are you Rheumy led care? Or MDT? x

[chrisj]

Rheumatology in charge of my SLE and osteoarthritis

[Wendy39]

Oh gosh, you poor thing. I've never heard of sight loss with a flare before. Was that with a migraine? Or a separate symptom? I really hope you at being taken good care of. My very best wishes. X