The difference between my local rheumy and the centre of excellence

[Insomniacette]

Hi All

Sorry for the recent silence. I had my appointment at the centre of excellence rheumatology department and I thought it would be helpful to outline how I found it. The short version is that at the centre of excellence I got the same standard of treatment I'd been having in the two countries I lived in before I returned home to the UK so I'm massively relieved and extremely grateful I managed to escape my local rheumatology department. The long story is below.

Background

I knew the care in my local hospital was not good because I'd been under the care of other rheumatologists in two different countries before I returned home two years ago. If I hadn't had this experience abroad I probably wouldn't have been able to compare and contrast and I wouldn't have realised what basic good care for lupus and sjogren's looks like. I tried to raise the discrepancies in treatment directly with my local rheumy last year (pre-covid), to ask why certain tests weren't being performed in the hope of getting things back on track. He pulled a nurse into the consultation room saying he felt he needed a witness and then duly diagnosed me with developing fibromyalgia - the catch all death knell for decent treatment as it enables rheumys to say they have no idea, limit treatment and follow up appointments and shift people to neurologists. In fact, after diagnosing me with developing fibro he told me my appointments would be with a nurse and then he'd look at whether they need to keep seeing me. After covid he told me all appointments would be via video.

The looking at scaling back my care was the final straw for me - I didn't have any symptoms of fibro - I just needed basic lupus and sjogren's care. So thanks to advice from the wonderful people on this forum, I kicked up a fuss with my GP and I managed to get transferred to a centre of excellence. I had my first appointment just over a few weeks ago and I thought I'd outline what the differences are.

Before the Appointment

Centre of Excellence: A nurse weighed me, took my blood pressure and asked me to go pee in a cup and deposit it in a room so it can be tested.

Local Rheumy: Nothing for two years. I never had my blood pressure taken and I only had my urine tested once when a blood test showed my kidney function may be impaired.

During the Appointment

Centre of Excellence: I was listened to with respect, asked about the medications I was taking (hydroxychloroquine). Every concern I raised about symptoms and the dosage of the meds I take was addressed in turn and I was physically examined - the rheumy touched my body, checking my joints for movement and checking my lymph nodes for any swelling. The rheumy also checked my scalp. The rheumy also asked what treatments I was using for dryness. She asked about my eyes, my mouth and even my vagina. She also suggested things that could help that I hadn't been doing and warned me about oral care and asked how often I was seeing my dentist.

Local Rheumy: I was dismissed. Told there was nothing that could be done. He told me if I felt my eyes were blurry I should go to the optician and that it's up to me if I want to reduce the dosage of my medication as there's no way of knowing. Said I could "give it a try" and told me to reduce the dose by half so take one pill instead of two. He didn't change that on the prescription and when I started to get worsening symptoms he didn't suggest going back up. No physical examination of me was done in the whole time I was under his care, which is two years.

After the Appointment

Centre of Excellence: I was sent to get a wide range of blood tests (8 vials of blood needed). I was sent for a chest x-ray. I was referred to an ophthalmologist because I have been taking hydroxychloroquine for over 5 years. I was booked in for a follow up appointment in 6 months' time and on a day when a dermatologist attends the clinic so they can check the lesions on my back. I was told I should continue to ask my GP to refer me to a cardiologist once a year to check on my bradycardia. My dosing of hydroxychloroquine was altered so it was in line with my weight. I was given an online chart which also functions as an app on my phone and all my test results were sent to me over the following week via the online chart which meant I could see them and monitor my own progress. The online chart also lets me email the rheumatology team with either urgent or non urgent questions and provides a phone number for the front desk so if I ever end up in trouble (eg fall ill) I can get in touch and get advice quickly. I haven't needed to contact them but it's nice to know I can if I need to.

Local Rheumy: I had minimal blood tests every other appointment - two vials - and was told to visit an optician. Follow up appointments were not scheduled and I would wait to have a random letter arrive by post or text. Often the letters arrived at the last minute, so a week or sometimes days before the actual appointment, so I couldn't prepare for them easily and would have to take time off work last minute. I was denied access to my blood results - I literally had to threaten to go to PALS just to have them sent to me through the post on paper and I had to have this argument every time with each blood test. If I ever emailed the rheumatology department I was ignored or, on one occasion, after three emails asking for guidance about covid, I got a non-committal response from a nurse four weeks later. No referrals whatsoever for my skin, hair loss, costochondritis, heart and eyesight.

What has been the impact of the difference in my treatment?

For the last two years I have felt out of control, scared and I've been getting increasingly sick - joint pain, hair loss, lesions, costochondritis - literally my back is scarred permanently and far worse than it needed to be. I also developed anxiety and was prescribed medication for it. I knew I was being cared for by someone who did not care. I also felt frightened as he was in a position of power and by calling in the nurse he made it very clear that if I were to advocate for my own care I risked being painted as a crazy or aggressive person. The only reason I felt able to risk it was because my GP has known me since I was 12 years old so she knows I'm not unreasonable and I feel would have defended me.

The difference in how I feel today, two weeks after my appointment with the centre of excellence, is huge.

First, the upping of my dose to match my weight (the centre of excellence rheumy literally calculated it in front of me) means my hair has started to fall out less and the lesions on my back are almost all gone. The itching has lessened, I haven't had an episode of costochondritis in the last two weeks and my joint pain has all but disappeared. I also have more energy - I'm not trying to stay awake anymore. Turns out that initially I was taking too much hydroxychloroquine for my body weight, but the local rheumy failed to calculate the appropriate dose and just casually told me to reduce to half, which resulted in me taking too little. I now take the exact right dose for my weight and I'm feeling so so so much better for it.

Second, the fact the centre of excellence rheumy took the time to explain why certain symptoms are unlikely to be linked to my lupus means I no longer worry about them. The symptoms that could be linked to my lupus are now all being checked out through various tests and they're being monitored.

I feel safe and happy and able to go about my day. The dark cloud and crippling anxiety that has been hanging over me and making me live in fear for the last two years has gone.

Also, knowing I have a follow up in 6 months and having the exact date means I know when I will next speak to my rheumy and doesn't leave me in limbo.

Why did I decide to post this?

The reason I decided to post this is because this week, the local rheumatology department sent me a letter about a video appointment they had scheduled in 5 days time with the local rheumy (clearly they hadn't been informed that I'd moved).

With this letter was also a thin slip of paper which had been inserted in the envelope. On the slip of paper it said that although the letter was for a video appointment, my local rheumy, Mr X, had decided he wouldn't be doing video appointments with his patients but would be doing phone calls instead, so I should stand by for a phone call.

I called up immediately to say I won't be coming back because I'd moved to a centre of excellence and I cancelled the appointment. But, seriously? How is it acceptable to do a phone call for a lupus and sjogren's patient with no bloods or anything?

I'm so upset about it because although I've escaped this nightmare other people may well be thinking this is normal or acceptable treatment. It is not. There are clear clinical guidelines for how sjogrens and lupus patients should be cared for and this is not it. I know it's a small thing compared to what could have gone wrong but my back is permanently disfigured because the local rheumy couldn't be bothered to work out the right dose of my meds for my weight. I have felt miserable, anxious and terrified because I knew I was getting poor treatment for the last two years and felt powerless in dealing with it and with each day I was getting sicker. Fighting for basic care is not something any of us should have to do, particularly when we are already dealing with so much. I'm convinced moving to the centre for excellence has likely saved me from faster disease progression and possibly even saved my life in the long term.

While I'm delighted I'm in a better place than I was, I'm acutely aware that others might still be stuck where I was and I wanted you to know you do not need to put up with it. Seek help if your rheumy is not caring for you. Don't be afraid. You deserve at the very least to have the basics done and I'm appalled that my local rheumatology department continues not to do that.

[PMRpro]

Never mind on the lupus forum - it should be sent to all legal departments in hospitals as a comparator that their hospital should aspire to. Not just in rheumatology. And even maybe the media.

There are a lot of advantages to be gained by living in another country for a time. The NHS can be wonderful - but it isn't "the best in the world", most of Europe has at least as good and often better. It might be cheaper out of your personal pocket - but then, sometimes you get what you pay for.

[Insomniacette in reply to PMRpro]

Thank you for your kind comment @PMRpro. The NHS is wonderful in so many ways comparatively - everyone should be entitled to healthcare and that's not the case in the US for example. The two other countries I was treated in were a mainland European country and the US and I wouldn't trade the NHS for the US system ever. But, what it did for me, is give me a base line about what should be happening so I was able to recognise when it wasn't. But I'm glad to see Energy14 is also getting the basics in her local rheumy department so it's not like this everywhere. But the fact that it is like this in some places should be more of a scandal. xxxx

[PMRpro in reply to Insomniacette]

Absolutely - there are tremendous variations between hospitals, but also even within a department if you get landed with the wrong consultant. I know rheumies who are fantastic - but my own personal experiences weren't anything like as good. One diagnosed me as having OA, no imaging, she coulf "feel it". Thirteen years later the x-ray done here on the same knee shows not a trace of OA damage, despite it having been mangled in a skiing accident 25+ years ago. Another decided what it wasn't and whatever tests and response to medication showed he wouldn't budge. Luckily I moved here shortly after!

[KayHimm in reply to PMRpro]

Good point! In 2019 the UK came in 16th in Europe. The NHS used to be the envy of the world.

I don’t want to see where the US ranks - probably equivalent to a third world country now.

xk

[PMRpro in reply to KayHimm]

Judging by some of the analyses I have seen in the past, they only achieve 16th because it is free at the point of care which gets lots of brownie points ...

[KayHimm in reply to PMRpro]

Makes sense. Access to care is good but ...

[PMRpro in reply to KayHimm]

Here we have co-pays, small enough although of course they can mount up. But you can apply for exemptions on grounds of income, they even come automatically since the computers are joined up, low income on the tax declaration appears as an exemption on the healthcare computer! Then there are exemptions for most chronic conditions and as soon as the big C crops up, you pay nothing for anything, Hospital in-patient and GP provided services are free - to encourage use of the GP as a pathway and an attendance at A&E that doesn't count as an emergency means you pay for going (stops Italians from outside the region using our much cheaper system for a health check when they are here on holiday!! It is a pretty good balance we think. Needless to say, polymyalgia rheumatica doesn't appear on the coding list, it's big brother GCA does ...

[KayHimm in reply to PMRpro]

That sounds reasonable. I know moving to co-pays is a debate in the UK.

We have go-pays, co-insurance, insurance premiums, up front costs, deductibles, out-of-pocket and more. The NY Times did a video of people from other countries hearing patients’ stories in the US. I couldn’t watch. I knew the shock would say it all.

I’m up to about $5,000 this year - about average for me. And that excludes premium. Oh, just had a procedure the other day - unexpected and turned out to diagnose serious stuff - and that will add another several thousand because they surgeon no longer accepts insurance. The stories you hear are real.

[PMRpro in reply to KayHimm]

Oh I know - and the NHS is definitely under threat of something similar. When you consider your expenditure for this year - there are families in the UK who have to live on that, never mind pay medical bills, There is someone on our forum who claims he has never come across anyone in the US who wasn't covered - must have led a sheltered life from what I hear from others.

[KayHimm in reply to PMRpro]

He has to define the the terms. « Covered » can still mean major deductibles. If they covered person gets in an accident or is diagnosed with a major illness, the cost is enormous. And of course there are people who are not covered. They go without their medications. The rate of uninsured in the US in 2019 was 10.9 percent. That’s a lot of people!

My exposure to the actual uninsured has been limited. I worked at a large inner city hospital. All the children got Medicaid if they didn’t have it on admission. They actually got outstanding care - taxis to and from the hospital 😅and saw the best pediatric specialists. It is one of the odd things that in the US you can be better off being a poor child on Medicaid if you live in a big city.

I just read that in the US even the rich get poorer care than most European countries! That’s right. It is because we have weak GP service and the coordination of services is terrible. We all have a ten doctors who have no idea what the other guy is doing!

So the American on your forum may not personally know of anyone without insurance but that does not mean they don’t exist. Yes, he is sheltered.

Sorry to go on and on. It is a pet peeve of mine and have had many years of anxiety over the possibility of losing my job and health care.

[PMRpro in reply to KayHimm]

Your version is the one that rings true for me - and I suppose someone who has enough to pay their overheads just generally isn't as aware of the people who just don't get the medication they need because they can't pay for it.

I know how I felt in the first 2-3 years after the Brexit vote - my husband was already retired and had medical cover here as an Italian pensioner. I'm only a year younger but that year coincided with age changes for entitlement for several things and I'd had to wait a few years more. Pension age had been 60 when I arrived, a year later it was 65, changed overnight with no sliding implementation and then they raised it to 67 for everyone. Wasn't crucial for me. I was self-employed, but there were a lot of older women about my age looking forward to retirement in a couple of years and suddenly they had to work an extra 7 years - nasty shock. And until I had my pension-related healthcare card in my hand I didn't know if it would happen in time for the end of the Brexit process - the UK government was telling us to get private insurance just in case and I didn't trust them to get an agreement. With pre-existing conditions it could have been a small fortune. For nearly 3 years it was always at the back of my mind and I rarely slept through the night, I cried when it was handed to me!

[KayHimm in reply to PMRpro]

Oh, I totally understand those sleepless nights. There was a time in my life when I was in a job transition and terrified I wouldn’t be able to afford health insurance. Being vulnerable like that with a chronic illness as we have is just awful.

I am so happy you were able to keep insurance with Brexit.

I calculated my estimated amount for this year. My share of medication - $178 monthly - is less than I thought. So it could be closer to $4,000 at the end of the year. That is still a lot of money. We have to be prepared for unexpected expenses like the big one I just had.

But at least we are both insured!

[Hidden in reply to PMRpro]

Had to add to this.My husband and I both lost our jobs last year due to Covid, we are 59 and 60 this month with the state pension kicking in when we are 67. We are suddenly minus our reasonable incomes for the next 7+ years and that’s a lot of loss to adjust to. Hubby has a small pension already paying out from 30 years service but laughingly this means I qualify for NOTHING! We have savings so won’t starve which is just as well as I used to sell advertising space in magazines covering events and that world has gone forever. Turns out I’m unemployable at 59 too so I’m learning to bake and made my first cake aged 59! Next is calligraphy, sky diving, dancing, bell-ringing .......

Stuff joints allowing of course 😁

[PMRpro in reply to Hidden]

It is a terrifying feeling isn't it? I hope you find something - although mercifully, you do spend a lot less when retired which helps!

We had calculated retiring early on the basis of the dates at the time but were also very lucky in that he gets a small German state pension from our years there - which for 7 years contributions is 2/3 of mine after a lifetime in the UK! Because I was never in a longterm contributary scheme I have almost no pension, I was self-employed for years and didn't have that much income to pay into a private pension - I moved to follow his career - and if he were to die tomorrow I would suddenly not have the best part of £2K per month altogether. Since he eats next to nothing the costs wouldn't fall much! At least we have other income.

Are you old enough to remember the days when people lived on the interest from their capital? My MIL did, refused to spend her own capital and couldn't touch what her husband had left her. I'm so glad we bought the small flats our daughters live in (in the absence of suitable accomodation to rent where they live) and they pay rent because while it isn't princely it's a darn sight more than anything in the bank! And one so-called high interest account has just cut the rate to 1/2%!

[Hidden in reply to PMRpro]

Ha ha yes, my parents now 85 used to talk about living off their interest. I have two sons 33 and 35, one married with two children and we were able to help them with their first house. The other rents by choice and we help out when needed which is most months. In 1981 my first husband and I bought a house for 20k - seems incredible now!

[PMRpro in reply to Hidden]

Our first property was a flat in Arbroath, £3,900 in 1974. We were going to help the younger one and her husband to buy under the first government scheme - but they were turned down. Both essential workers - something really stank about that set-up so I suspect we were well out of it.

[Energy14]

Good on You Insomniacette 👍🌼🦋🌻 You Stood Up for What You Know is Right and True to You 🤗

Interesting how Hydroxychloroquine is calculated by weight.

I have been very fortunate incomparison.

My Rheumatologist is caring, listens, thorough, goes above and beyond. Always has my back. Not all UK hospital's are the same.

All my follow up appointment are given with plenty of notice, referrals onto Opthalmology, Lung fung/blood tests are done routinely.

I am happy for you 😊 now you can Relax, and Calm your system 🌈🥰😘💝

[Insomniacette in reply to Energy14]

Thank you! I'm so glad you're being well looked after Energy14 ! The reason I wrote this post is because I wanted to make sure people were aware of what good care looks like. As I wouldn't have known if I'd just had the experience of my local rheumy all my life. xxxx

[Energy14 in reply to Insomniacette]

A massive achievement 👏 credit to you for Sharing as it is very taxing when battling with illness everyday ♥️

[KayHimm]

Your detailed post which contrasts attentive care from what sometimes feels like sub-standard is likely to help clarify feelings for many people.

I live in the US where we have no universal system and different problems. But I recognize everything you state here - have heard the deficiencies in many people’s accounts.

You see to feel comfortable and confident in your care now. So important!

Best of luck to you.

Xk

[Insomniacette]

Thank you so much KayHimm xxxx

[maggielee]

Bravo you(also thank goodness).... So glad you were able to escape poor treatment & that the centre of excellence is doing their job....

This is the kind of feedback the Welsh government needs as they think we do not need even one centre of excellence as all our needs are met...I would like to use this to send to my local welsh rep...all up for elections...

PM is right....if we could tour some of these folks into a real medical examination ooohhh could be even virtual, since this the flavour of the day for my appt. and sadly by phone to!!!!

Thanks for sharing...

[Insomniacette]

maggielee I had you Welshies front and centre in my mind when I wrote this. It weighed on me and still does that someone in Wales wouldn't have been able to escape like I did. 💔xxxx

[maggielee in reply to Insomniacette]

Bless....It does Stink here...nicest word I can write....

If Wendy was not taking her spare energy (spoons) with the huge support from our chair & CEO (lupus uk), it would look very hopeless here....having to reach out to get medical support in England is not good, especially when you feel awful which is why we need to see our docs in the 1st place....

I am sure my health would be better now if I could get better coordinated treatment. It hard to explain at work why it's so slow to recover.....if I do... So appreciate your thinking of us here... There are some gem doctors here, just not with the power to make things better...they too give me some hope....

ml

Ps that's for letting me express my frustration....off to a sunny day before the storm 😎...with my 50 factor...hug ml

[maggielee]

Thanks by the way

[RosieA]

Well done you and your GP. What an incredible difference. It shows that we need individual and collective strength to get the care that we need. It is nevertheless a tragedy that some will read your post and sink into a deeper despair as they relate personally to your previous poor treatment. I have just read a very interesting article on the BRS website on rare diseases. It notes that non genetic rare diseases (making up 20% of rare diseases) have slipped through the latest initiative in improving care but a raft of new recommendations have come out subsequently. Let's hope that they enable everyone to access the care that you so deservedly have got and are the right for all.

Deepest congratulations to you and hopefully your experience may nudge others to follow your example. xx

[Insomniacette in reply to RosieA]

Thanks RosieA really hope I don't cause people to despair. More than anything I'd like people not to feel like they are losing their mind. I honestly thought during those two years, maybe it's me? Maybe this is normal and what I had before wasn't normal? Maybe I'm being difficult? etc. Then I started to research - I read the clinical guidelines - and realised no it's not me and I need to push or this is just going to get worse. I also hope to increase awareness about the wide variation in treatment that is out there. In many ways an academic study looking at what the baseline for treatment is in rheumatology departments across the country would be enlightening. What standard tests are done on first visit? What standard tests are done on subsequent visits? How are results communicated to patients? Do rheumatologists make referrals or tell patients to go back to their GP? Are appointments in person? How frequent are appointments? etc. xxxx

[RosieA in reply to Insomniacette]

Oh, please don't get me wrong. I meant in no way were you placing people in despair but that your experience may help people to expect more through your example. It is so very easy to accept what is often poor practice as normal because you may never have experienced anything else. We had one member of our family who was at the brunt end of a hospital heart scandal. It taught us many things. sadly the hard way, so I can empathise with experiencing the best and the worst. I remember both the sense of despair and ultimately relief when you met the Dr who would turn your life back on course.I am fortunate to have a very caring consultant, who listens and answers all my questions. There are some great guidelines for Lupus on the BRS website from 2017, recommending number of appointments, test etc but you really have to dig deep to get them. I should imagine that a great weight has been taken off your shoulders. xx

[Insomniacette in reply to RosieA]

Thanks so much RosieA you get me totally! I'm so sorry to hear about your family experience. Honestly I can't even begin to imagine how difficult that must have been. xxx

[stiff19 in reply to Insomniacette]

You will not cause despair, the health service does that, you offer guidance and hope 👍🙏

[baba]

Thank you for posting this, very well presented, I'm sure it will be helpful to many.

[Oshgosh]

Thank you for posting this.

[svfarmer]

I so pleased for you that the centre of excellence has really helped you - I’m very fortunate that my local rheumatologist is fabulous, he is very thorough and I get regular appointments with him but know that this is not the case for everyone xx

[stiff19]

So pleased for you and you are receiving help you deserve. I’m the ‘fibro labelled’ by rheumy who didn’t care less and used to get witnesses to sit in as if I was some sort of criminal. Fibro is not fitting and neuro dismissed the diagnosis saying it’s a complicated area. Neuro has now left the trust.

When it’s a department ie rheumatology rather than single rheumatologist it’s worse. I thought rheumy getting colleague to see me was to help, it was a dismissive 5 minute appointment with hand out leaflet ready to diagnose fibro, (despite urgent appointment beforehand and being told the symptoms requiring urgency were definately not fibro and being told by others it’s not but no other diagnosis met so easy option.

Hydroxy had helped for the short time I took, my hands at least , and to be told they’re not helping, well , an answer is needed for why things are now worsened. But where you are oh so lucky to still have the gp you’ve had since 12, is great but now a rarity and when your gp will not make referrals and despite what she sees says well you’ve been diagnosed fibro by specialist you have hit a brick wall and the nhs leaves you faith and trustless.

The nightmare is normal for many of us, it’s also a postcode lottery and many of us can’t afford private help the same as insurance,

Choosing between paying bills or eating let alone healthcare which of course the need for is not a choice.

So nice to hear your positive post, in outcome anyway, and no nobody should have to fight for care but it is reality. The avoidance of diagnosing is now reality to not have to meet clinical care guidelines, starting with gp surgeries not referring to save surgery money.

The nhs is good in many ways but you are right it’s failings and postcode , department failings are a hidden scandal.

Long may your good care now continue 👍🙏

[Insomniacette in reply to stiff19]

Ah I'm so sorry stiff19. I know the feeling all too well. I hope you manage to find some help and that things improve. Yes I was very lucky to have a supportive GP practice.

I should say Fibro is a very real and important illness and I'm sure most diagnoses are completely accurate, but in my case I knew I didn't have fibro, I had zero symptoms. He only raised it when I started to question him and it really felt like it was happening because he wanted me off his service instead of just listening and addressing things. The fact none of my previous rheumies, nor my new rheumy have suggested I have developing fibro just makes me feel it was a lazy diagnosis on his part in my case.

Really what I hope is that the standard of care I experienced at the Centre of Excellence becomes normal across the country. Now that doesn't mean all the tests and chest x-rays will be necessary all the time for everyone. As we all know Lupus and Sjogren's impact people differently so there is inevitably going to be a difference in practice between people. Some people will not need all the blood tests or x-rays or referrals. But in my case it was a difference in the management of my personal condition. The way my local rheumy was managing me was completely different to all the rheumys before him and, it turns out, completely different to the centre of excellence.

I do hope things improve for you!! xxxx

[Hidden]

Thanks for posting this - the comparison in care sits like a yawning chasm doesn’t it?

A few years ago, last time I was well enough, I travelled from my home in Scotland to London to attend a gathering hosted by the London Lupus centre with presentations about Lupus, Sjögren’s and APS. I actually had to sneak out of the presentations a couple of times to go and stare at the Thames from mega wealthy London vantage point and take deep breaths.

It just became distressingly apparent to me, from listening to the various guest speakers, that the standard of care most of us in the devolved regions and other remoter parts of U.K is beyond sub par.

I returned home with a letter from one of those eminent speakers requesting I be referred to their NHS counterpart in another area of Scotland. This was refused flatly on the grounds that there is enough rheumatology expertise available to me locally not to warrant referral outwith my area healthboard.

Fortunately Lupus and RA patients here are fairly well treated. But those with the rarer rheumatic diseases like mine, including Sjögren’s and systemic sclerosis, often have a terrible time getting specialist care here.

The bitter taste that conference/ symposium in London left me with lingers on. Good and ambitious Rheumatologists with a special interest in the rarer rheumatic diseases are obviously going to want to work in centres of excellence if they have the choice to. Which means that a proportion of the ones we get are going to be duffers. Luckily my latest one isn’t and she has a special interest in Lupus - which I don’t have.

I’m very tenacious and proactive so I am at last getting quite good follow up care but I know so many here who are not. A lupus friend tells me that his EDS is completely ignored/ disregarded by our rheumy - and don’t even get me started on the misinformation we’ve both been given about Sjögren’s here.

Whenever I’ve attended clinic I’ve been asked to bring a clean urine sample, get weighed and had my BP tested before seeing the consultant. So this sounds quite comparable to your CoE and prior to the pandemic we were all given follow up appointments at least.

But the content of these consultations has been very patchy. My last rheumatologist actually googled Sjögren’s in my husband’s eyeshot and local health economics and Scottish politics and related egos seem to play a massive role. As someone with rare overlap CTD I know it’s very easy to slip between the net here because they just aren’t seeing enough patients like me.

Scotland doesn’t have a CoE either - which is shocking considering its size and the fact that Glasgow hosts a world class university research centre for rheumatic diseases.

[Insomniacette in reply to Hidden]

Thanks Hidden you're absolutely right. The difference was absolutely mind blowing to me. Though I do note lots of people on here have said they have excellent local care and a rheumy they trust so I think it largely depends on how lucky or unlucky you get.

I think for me the key lesson was that I needed to be exactly as you put it "tenacious and proactive" in my own care. And that was something other people on this forum taught me how to do.

The only thing I'd say about googling - at least they made the effort and didn't fake knowledge!

I think what would be really helpful is clear guidance for patients on how SLE/Sjogren's should be managed.

What are the basics we should expect if we have been diagnosed with these conditions? That's still not massively clear to me - I had my baseline from my treatment abroad. EG I knew every time I went to see my rheumies abroad I needed to pee in a cup, my blood pressure was taken, they asked about my symptoms, sent me to an ophthalmologist, they physically examined me, so the fact my local rheumy wasn't doing these things stood out to me as different and I asked him why which is where our relationship broke down. He didn't explain why - if he'd given me an explanation I may well have accepted it, maybe these things weren't necessary? Instead he called in a nurse and diagnosed me with fibro 🙄. Then when I went to the centre of excellence they did all the things that my abroad rheumies did and they listened to me so it felt like I was back to normal and in a safe place again.

[Hidden in reply to Insomniacette]

Yes completely agree that once a precedent has been established we know what to expect and can recognise both good and bad practice as we experience it. I actually know, having previously been misdiagnosed with RA, that all rheumatic autoimmune disease patients should have their pee, BP and weight routinely monitored. In an ideal scenario we would also all be able to access our blood tests results online and be sent copies or written to directly for all clinical letters.

It’s just such a postcode lottery and this just isn’t right. X

[Insomniacette in reply to Hidden]

Preach Hidden ! 🙌🙌🙌

[Hidden in reply to Insomniacette]

😉😊🙌🏻

[BonnyB]

Brilliant post. Thank you for highlighting this. Pleased to hear you are on the road to recovery now and have faith in your new hospital to guide through any bumps along the way. X

[Insomniacette in reply to BonnyB]

Thanks BonnyB ! 💕💕

[Hidden]

RESPECT!Well done, excellent outcome, thanks for sharing, an inspirational journey. Very pleased you feel better 😉

[Insomniacette in reply to Hidden]

Thanks Hidden !! I find your story inspirational! 💕💕

[Jpmoore]

Wow! This was a real eye-opener, thank you for sharing your experiences. I’m just about to start my journey into determining whether I do have a confirmed diagnosis of lupus and Sjogrens - so this was timely! I think I’ll run with my first local rheumatologist consultation (26th May) and then decide whether to transfer to the local centre of excellence, 60 miles away but would be so worth it if treatment is better, like your experience showed us so dramatically!

[Insomniacette in reply to Jpmoore]

Jpmoore I would just emphasise that local treatment is not all bad! Lots of people have had great experiences and if I'd had a better rheumy I would not have tried to leave! It largely comes down to the individual rheumatologist. Not if it's local or a centre of excellence. Some people have really excellent local rheumies so I definitely don't want to put you off your local team. In my case it was very obvious to me that something wasn't right and I was too frightened for too long to do something about it. This forum is what encouraged me and gave me the tools to push for better. I really hope you find your local team are awesome - that certainly seems to be most people's experience! xxx

[lufibabe]

Thank you so much for taking the time and sharing with us your experience.

Can I just ask where the Centre o excellence is? And how do you get referral there?

Wishing you all the best

Thank you

[Insomniacette in reply to lufibabe]

So I asked to be transferred to a centre in london. I wrote my GP a very long letter explaining why I was concerned about my care and how I'd lost faith in my rheumy. She referred me, but this had to be approved by an independent rheumy from some sort of central NHS type triage centre I think (?). I had to have a conversation with him. Which I did. The independent rheumy then approved the referral.

The Centres of Excellence are listed on LupusUK's website: lupusuk.org.uk/centres-of-e...

[Jpmoore]

Thank you for the support - it’s much appreciated ! 😊 xxx

[lufibabe]

Thank you so much.👍

[CecilyParsley]

Hi there, firstly I cried reading this. You express so eloquently how many of us are stuck with uncaring, uninterested and lazy Rheumatologists who treat us as an inconvenience and get defensive and abusive if we try to fight back. My diagnosis if Fibro and Hysteria two years ago has meant that I now receive worse care than I had before. Like you I had no BP, no urine tests, no physical examination in five years with one Rheumy. He said your GP can monitor your bloods once a year? I totally identify with the crippling anxiety and depression poor care causes. I am so so delighted for you that you are now getting the care you need and deserve. Thank you for posting. I read it out to my husband and he is angry for you, for me and everyone else who has been treated with such disdain. Xxx

[Insomniacette in reply to CecilyParsley]

I'm so sorry it made you cry CecilyParsley !! Don't despair! I really believe things can get better. I'm hopeful that LupusUK, the work they're doing in educating us and helping us talk to each other will give us the tools to ask for better.

The first thing that would be helpful is to know what should be happening. I think a lot of the anxiety comes from not knowing and I suppose that can be difficult because every lupus case is different, but perhaps if we could have some help figuring out what standard practice should be. Also I really think we shouldn't have to fight for our test results every time. I don't understand that at all.

Anyway, change starts with open conversations about the state of things and I hope that as we all share and talk more about our experiences we can try to help each other improve things for both ourselves and for others. I had the courage to try for better thanks to the conversations I'd had with you, Spanielmadlady , stiff19 , Krazykat26 , svfarmer and many others on this forum. Without you all giving me the strength and encouragement to push forward I likely would still be where I was. So it's me that should be thanking you. xxxx

[CecilyParsley in reply to Insomniacette]

Bless you. I feel too exhausted and low to fight currently. I am now doubting whether I have Lupus or Bechets or just Fibro. I need to recover, pick myself up and fight again.My GP has known me for ten years but since the Fibro and hysteria diagnosis I am being patronised, gaslighted, ignored. They now have me down as an unstable person. When my asthma resurfaced having had to come off the Hydroxychloroquine because the Rheumy doubled my dose to 600 mg because of my “ bulk” causing macular oedema , they constantly tried to relate it to my mood or a chest infection when I knew it was asthma. They repeatedly refused to give me inhalers or nebules to the extent that I ended up blue and needing a blue lights ambulance. Thankfully I saw a Respiratory Specialist two months ago who was so horrified by the care I had received she called the nurse it to tell her. She said your surgery have not got a clue have they. Since then my peak flows have gone up, I am no longer breathless and I have nebules as back up. Huge difference in care and it makes a massive difference to my life xxx

[Insomniacette in reply to CecilyParsley]

All it takes is that one medical professional to take you seriously, look at you as a person and treat you with respect to make you feel human and safe again. I'm so glad you found the Respiratory Specialist and I hope things continue to improve and you find specialists who treat you with respect dearest. xxxx

[Pumpkin2009 in reply to CecilyParsley]

Cecily, You stated that you have been with your GP for 10 years and it does not sound like you are being given the correct care you deserve. I know how hard this is, but I just left my GP that I had been with for over 20 years and actually diagnosed my lupus and I had gotten good care. The last few years, the care was not as thorough. When I recently broke multiple ribs, he did not send me for scans until a month later. There are many more details of things that weren't right, but I felt very comfortable there and not a fan of change. That made me change my mind. I have just started with a new GP and already am surprised at the difference. You may need to start over with someone new who will take you seriously. Doctors who we have been for a while seem to get complacent. The Covid situation did not help. you need someone who is listening to you and validates your concerns. I know we still aren't going to get any miracles with so many health issues, but it can be at least a little better.

Healing hugs.

[CecilyParsley in reply to Pumpkin2009]

Thank you yes I realise I have to see a different GP. I recently had a telephone consultation with a locum and she was very thorough and made a world of difference. She actually rang me concerned that I had been diagnosed with hemiplegic migraine over the telephone and went through the medication. She prescribed local anaesthetic for my genital ulceration and gave advice on my vaccine. I have her name now so I might see her again. Thank you so much xxx

[Pumpkin2009 in reply to CecilyParsley]

Cecily, That is great. My new GP has been in touch several times since my visit. Hopefully, we are both on the right track.

Healing hugs.

[CecilyParsley in reply to Pumpkin2009]

That is wonderful. All we need is someone who gives a damn and tries to help xxx

[Hidden in reply to CecilyParsley]

Well said 😊

[EOLHPC]

Great post & discussion 👏👏👏👏. Many thanks! Every detail rings true to me...am totally relating to all your comments, cause this is how my LUK C of E rheumatology clinic has cared for me too❣️& my immunology clinic @ the same Univ Hosp is equally excellent...this care has been consistent at both clinics for years 🍀❤️🍀❤️Coco

[Insomniacette in reply to EOLHPC]

This is so great to know! Thank you EOLHPC 💕💕💕💕

[Pumpkin2009 in reply to Insomniacette]

I totally agree. Great posts by all.

Healing hugs.

[Jumper99]

Thank you so much for posting this, it gives me some hope! I have scabby type lesions on my back, sort of wart sized I think, but no one has ever been bothered about them. I recently had a 5 day course of steroids, first time ever, and it has affected them. One on my front has gone from brown to white and a couple of others started to fall out! I am also having problems finding a rheumy (or a GP) who will do anything for me. A recent one did get me referred for a few things and was understanding but he retired. So back to local rheumy who says he doesn’t know how to treat me because I’m too complex. And that was over the phone.

I had a Zoom meeting with a London lupus man who has at least put me on an 8 week steroid course as I’ve reacted so badly to the Covid jab (not allowed the 2nd one now though). But of course no examination but also no blood test requests which he could have asked my GP to do.

How did you find the centre of excellence? I don’t know anything about them. Are they all over the country?

I’m so pleased to hear that you found someone who would listen to you properly and think about your case and know what to do. I’m also pleased to hear that you are feeling better both physically and mentally and I hope it continues like that for a long time xx

[Insomniacette]

Hey Jumper99 Sorry to hear about the lesions and the unhelpful docs.

So Lupus UK list the Centres of Excellence here: lupusuk.org.uk/centres-of-e...

They are all in England at the mo. Wales, Scotland and Northern Ireland don't have them sadly. But local rheumys also provide excellence level care - a lot of people who replied to this post have said they have a great relationship with their local rheumy and are well cared for. I think the trick is finding someone you are comfortable with.xxx

[Jumper99 in reply to Insomniacette]

Thank you x

[Paprika60]

Thanks for posting your very informative post. I too have had many difficulties over the years and I just looked it up if there is one in London as I have never heard of Centre of Excellence until now. I see that Louis Coote Clinic at St. Thomas' is one such...except I had very negative experience, one cordial but aloof doctor after another. After five years of that I finally left. I think you are lucky to have found a good one. I am about to try Addenbrooke's. Fingers crossed. My current doctor has been ignoring my complaints on Sjogren. He is yet to examine me since he has started seeing me over a year and half. He only goes by blood tests. Why are there so many doctors who do minimum? I don't understand why they even become doctors...but I know there are some genuinely caring and wonderful ones. One has to be persistent in searching for one. It just gets very tiring after so many years. Thanks once again

[Insomniacette in reply to Paprika60]

I really hope things improve for you Paprika60 xxxx

[StriatedCaracara]

Thanks for posting this Insomniacette.

It is what I'm expecting of my NHS referral 🥶

Will let you know how it all goes...

[Insomniacette in reply to StriatedCaracara]

Fingers crossed for you!!!