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LUPUS UK Community Survey - Question 5 - Your experience(s) of inequality

Hi everyone,

I believe this may be the last planned question for the research study. As with all of these questions please do feel free to comment on each other's responses as you do for other posts as getting a conversation going about all these issues is also really helpful. For information about the research this is linked to, please go to healthunlocked.com/lupusuk/... or contact MelanieSloan .

We have identified that many people think there is an inequality in care in the following ways;

A) lupus and other connective tissue diseases being less well understood and catered for than other diseases.

B) geographical inequalities of access to specialists and out-of-area referrals refused in some places.

C) some people perceiving they are treated unequally due to their gender or personal characteristics.

D) people feeling that a previous mental health or psychosomatic diagnosis/misdiagnosis on their records influences their care.

E) those who are seronegative or have unclear blood markers feeling they may not be given the same care/treatment options.

If you feel that you have been subject to an inequality listed above (or another not mentioned) and are happy to share your experiences, please comment below.

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I can definitely relate to C and D in this survey, and thank you for putting this up.

I have a long history of mental health problems, and prior to official diagnosis of Lupus, it was this issue on my file that a lot of my consultants seemed to fixate on, so frustrating when the reasons for my MH problems bore no relation to my actual physical problems. I lost count over the years that I came away with a diagnosis of stress, your depressed, you need counselling, it was an easy get out clause for some of the doctors. I have tried and failed to get MH removed from my files, as it is still mentioned today.

More recently C has very obviously come to my attention, I cannot say much as this a new experience for me, it I think, comes down to the fact that I stood up for myself, and it was not received well.

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Thanks very much for responding lupuskaren. When you say standing up for yourself was not received well, did it change the way you were treated/ Drs behaviour with you? (If you’re not comfortable sharing on here, please do message me - but only if you’re happy to)

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Yes Melanie, because I questioned my consultant about a medication change, which turned out to be right/detrimental to my wellbeing, I got the 'I am the doctor, you patient' line. The consultation was cut short and I got very short thrift, which made me feel totally deflated. I stand by my decision to rightfully have input and ask questions when it comes to my care. Sadly things have taken a downward turn in a big way since then, and it is hard not to feel I am being punished for daring to question.

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Thanks LupusKaren, sounds a difficult situation and as you say, it was necessary to question when the treatment was detrimental to you. Do you feel that then became an inequality of power rather than teamwork between you and your consultant? Why do you think questioning the consultant was taken so badly when you knew their decision was wrong?

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Spot on Melanie yes good words inequality of power. I think my questioning was taken badly because I didn't just leave it at that, I had some written evidence that a trial was suspended due to events on the drug they wanted me to take for my medical condition, it was at that moment I think the dynamic and indeed mood changed between us.

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Me too, Karen. But you're the expert on your body … Yeah?

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I fall into the C, D & B category.

With me I cant escape the fact that they just don't see me as quite an equal patient - and you add a complex illness and it just seems too much like hard work for them. I believe they have to - depersonalise the patient to a certain extent to do their job in the first place, but if you've been further marginalised by a somatic or mental health label then you're rendered into something sub human to them. It gives them the perfect excuse to do nothing - and worse still they scapegoat the victim as the one who's to blame which I think accounts for a lot of the bad behaviour. This isn't just an interpersonal matter - I believe its also a legal safeguard for them. A Doctor saying 'its anxiety' is legally ambiguous.

When I was suffering under way too many mental health labels - unlike any other human being - when I managed to assert myself - this was seen as aberrant psychological pathology rather than a valid comment that required respect and action.

Recently my Doctors had to totally shift focus from the mental health perspective to an underdiagnosed neurological injury from a 2003 car accident. This has changed their whole perspective as to who I am and I'm now been treated with more dignity and faster medical action.

But unfortunately yesterday I seem to have graduated into other vortex. Being from an isolated town - I turned up to my very first medi - skype specialist appointment thinking - like all other appointments in my life, it would be private, confidential and I'd have some control at least. I was also told I was going to see a car insurance Doctor representative for some form filling - to get some help with multitasking that's recently become more difficult.

I ended up with my GP sitting in on it ? to help ? - which he did at times...… but at other times he just knobbled me. I understand the good intention for him being there - 'short term memory fails when multi - attending possibly getting worse ' - but I didn't give any consent for this. Nor did I give consent to speak to the particular type of specialist that actually ended up on the computer screen. I felt totally ambushed. I had no real opportunity to prepare for any of it.

When I suggested - better funded outside specialist assistance for neuro rehab - that I'm actually entitled to due to road accident insurance - my GP piped in and recommended the local 'under his direction' OT services that I know are useless - and requires way way less paperwork on his part.

Also a lot of the questions the specialist asked me put the GP in a compromising (oops I didn't do my job properly there - situation) - so he was in very subtle defensive mode and I found myself having to hedge my words. It eventually lead me to not speaking about many of the things I desperately needed to say. I doubt the specialist understood the dynamic that was happening at our end and I must have come across as more peculiar and neurologically compromised than I actually am. The appointment just went in a totally wrong direction.

After all this - instead of much needed paperwork for some hands on help get me some long awaited neuro rehab - the first - and way to quickly suggested - solution from the specialist was - "how about an antidepressant" ie. lets just warehouse you.

I'm actually getting more respect and being more quickly believed with SLE symptoms now - but if my memory gets worse - I've got a possible future loss of human rights to look forward to ?

Thankfully...….sort of...…. some of the recent poor memory issues are probably due to low iron / lymphocytes / white blood cells etc. and should get better. It was a real eye opener. I'll be getting my power of attorney issues properly sorted after this.

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Freckle what a fabulous post, thank you so much for sharing, I can relate to almost all of it, apart from your experience yesterday, I am so sorry you had to go through all that, and had to endure the feelings that it has undoubtedly invoked. (((Hugs)))))

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Ooooowph and whooooph. Thank you Lupuskaren. And thank you for you're wonderful post too. I was actually still a little bit in shock and didn't think I'd respond to Pauls post until I saw you're reply. It got my blood up ! Our experiences are just too horribly familiar. I'm sorry you've been through this traumatic cycle too. I wish I could rip those labels right off you're medical record.

Lots of hugs.

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Thanks for sharing this freckle, some very key points in there that sum up what many posts on here are saying. In particular, that a previous mental health diagnosis/ misdiagnosis means people are feeling that not only are their physical symptoms mis-attributed to mental health but also, like you say, asserting yourself can then be used as further evidence of mental health/ health anxiety etc?

Sorry to hear about the Skype appointment, a great idea in theory but not without your consent for all the participants and then feeling you couldn’t say what you needed to say.

With the memory issues, which are common to so many with lupus, when you say that could lead to a further reduction in human rights, can you explain a bit more about what you mean please?

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I think the less cognitively alert I am - the more dependent I am on the good will of those around me. With lupus this could be anything from mild brain fog - to entering a mild or more serious delerium either from illness or medications - all the way through to some of the more serious end neurological involvement. I think the less neurologically competent you are - the more prone you are to all forms of abuse. Technically were all meant to have equal human rights but I've watched how my severely brain damaged brother - and others in his predicament get treated - sometimes with breathtaking sadism. Without advocates with a strong mental compass by his side he'd literally be dead from lack rehab physio and propper care by now. I really wish this was an exaggeration.

I fear that if I can't easily speak for myself - organise my thoughts well or perhaps even end up not remembering everything I need to - then absolutely anything can happen to me. It's the ultimate vaulnerabilty. I could become the victim of whatever whim somebody else has and this includes my GP and specialists.

This may sound a bit to far gone with cynicism - but without enough money ( here there's a nasty growing gap in private and public health services ) and without you're own voice - you loose you're human rights. The police won't turn up to save you when you've been referred to the wrong section of the hospital and can't speak co - herently.

It's part of the reason I hid some mind altering delerium when my kidneys and other bits of me - possibly the brain ? - was being effected by SLE and I couldn't get help due to shallow psychological labels. I would have ended up in a psychiatric unit instead of a renal unit. I still wonder wether I'd still be alive if I wasn't able to conceal just how neurologically unwell I was.

One of my most searing memories is when I did make the mistake of revealing how mentally unwell I'd become as a 15 year old. I was preyed upon by an ambitious young psychiatrist who managed to set me up in some extremely traumatic unethical research while I was an inpatient at an adult renal unit in a large public Hospital. He well and truly mislead me regarding what was going to happen when he took me to his section of the hospital. I was too young and too unwell to give any form of real consent. One small system failure and I fell victim to an ambitious high IQ. psychopath calling himself a Doctor.

I'm actually thinking of putting the human rights of that 15 year old girl to the test - via a royal commision into abuses within the mental health system. There were some very appalled witnesses - (and footage taken)- but it occured to none of these adults thought to put a stop to it.

Onlookers have even less time today.

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That’s awful freckle, so sorry that happened to you as a child.

You’re definitely right that more research (and more openness) is needed into NPSLE. Recent research shows that 50-80% of us are affected in some way with it.

Thank you so much for sharing your stories; I’m sure they will help many other people but please only share if it’s not too upsetting as the trauma of reliving these things can be so hard.

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"warehouse you" … brilliant expression. Thanks for that. No wonder SLE patients are so angry. Or, maybe that's just me.

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.....very angry.

Around the 1990's when the internet was first put on here (Australia) I read the term in some benzodiazapine drug marketing literature aimed at Doctors. I think the sentence went something like - " effective for wharehousing sub normal patients " Back then you could find many gems like this.

One of my first Lupus (googles) ever was an American rheumatological society - article on lupus. Three quarters of the way through I'd never been so angry - confused and horrified by a any article in my entire life. I was wondering why do they hate Lupus patients so much ??!? - then when I got to the bottom paragraph - I saw they where attacking African American sufferers and making racist assumptions about how they lived - and blaming that as the cause of their lupus. ( this was late 1990's I think ? ) In sociological terms - really not very long ago.

I think as long as Doctor's don't know the cause- they'll blame whatever small minded thing they can conjure up.

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I'm beyond shocked by what you've told me from just 20+ years ago.

I have far more respect for those very few Doctors who've admitted "I don't know" than the majority (in my experience) who need to make the patient feel that they're the problem.

In a rough patch just now ..... can you tell!! 😀

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Same here - Tend not to look through rose coloured classes when were in this state.

Yes...…..Its always bewildered me that instead of Doctors saying I don't know - let me refer you on to someone who might - we get blamed. Its possible they exist in a culture that just doesn't have any budge room for them not knowing everything - which is technically impossible.

: )

x

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Oh, yes .... yes .... yes. So true. Living the dream!

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That's a very good idea. I can see from what happened that I've let things get a little bit out of control by taking an overly discreet & cautious approach. I'm going to work on being more open and assertive with them about some long standing issues face to face - see what happens ? I've sent written reactions to some of the more empathetic Doctors when appointments go astray. But in the end it doesn't seem to make much of an impact.

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I don't know if there is an inequality all I know is the doctors are wearing me out by making me do the research into helping my pain and naming my symptoms. They don't volunteer anything unless I have researched it and ask point blank about it.

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This is exactly how I feel right now, worn out!!!!! They do not want to listen , or try and understand the daily struggles. I’m taking a step back so I can muster the energy to continue my quest for a more decent life x

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Same here.

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Interested there is a vast survivorship programme for cancer and not for diseases like lupus which affect young people lifelong ...very inequitable support with benefits etc. and employment support

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Thanks Milliecox, do you think the benefits changes have impacted all disease types or been different for diseases like lupus?

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it is definitely harder for people with invisible health problems.

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I have to agree. Both my parents have recently been treated for cancer. They have had a hard time of it BUT the treatment and care pathways are clear and supportive. What's more, it swings into action automatically. Despite the complexity of some of their symptoms and the erratic way the diseases progressed, they didn't have to present and re-present themselves to their GP for every variation in symptoms. They didn't need to seek multiple referrals and re-referrals. Instead, every stage of their treatment was explained, they have Macmillan nurses who made home visits on a regular basis without having to be contacted. They were helped to feel cared for and welcomed at every appointment for chemo- and radio- therapy. Follow-ups and monitoring was scheduled automatially and well in advance. No-one expected them to be responsible for raising questions like we have to - "Isn't it about time I had my CK levels checked?", "Shouldn't someone have considered my adrenal function by now?" etc etc. That doesn't mean at all that they have had an easy time. But it is such a contrast to my own care, where I have the definite impression that no clinician wants to take responsibility for sorting out my problems. I feel like I'm the parcel in a game of "Pass the Parcel" that no-one wants to win. And if I don't raise a possible line of enquiry or investigation, no clinician will. The variations in our care and treatment seems (from this forum) to reflect that. Very few clinicians seem to want to take ownership of patients whose disease is "complex" and poorly understood and we suffer as a result.

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Excellent response, thank you x

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This is it exactly well said. xx

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👏👏👏👏🌟🌟🌟🌟🌟 Well Said!

Eg. On monday i was at my univ hosp for a 3 monthly immunology appt...on the way to clinic i pass the big Macmillan area in oncology which is created via a tall curving partition cum bookcase. When i have time, i stop to check out the SUPERB patient info & advice & support services etc literature on offer.

Because i’m about to have instrumented spinal fusion surgery (mainly needed due to my Hypermobile Ehlers Danlos scoliosis etc, but the lupus etc join the party) & am in Intestinal Failure on Enteral Nutrition with severe bowel control issues (all caused by v early onset lupus + sjogrens + small vessel vasculitis + antibody deficiency disease + hEDS), this time i decided to study the nifty, fat booklets re Eating Probs, Regaining Bowel Control & Going Home from Hospital. OMG: pretty much EVERYTHING in these booklets is relevant & helpful in my case (thinking about it: cancer patients & immune dysfunction + connective tissue disorder patients have a lot of stuff in common eg soft tissue damage to immunosuppression etc etc).

Yes, the highly specialised Gastroenterology Bowel Retraining & Biofeedback clinic + Gastroenterology Nutrition & Dietetics Clinics i attend are giving me their own info leaflets etc,, which are truly pretty darn good, but none are as beautifully produced, well worded, empowering etc as these Macmillan publications. From now on, i’m going to try hard to ‘think outside the box’ & make the most of this sort of specialist cancer patient stuff.

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Thanks barnclown, yes I’ve seen all those cancer stands too. Do you find lupus specific information in all the clinics you attend?

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Other than in my rheumatology lupus/connective tissue clinic, NO i don’t find info specific to lupus or my other lupus-related conditions in the many other clinics i regularly attend eg eye clinic, gastroenterology, immunology clinics etc etc.

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Thanks whisperit, that’s very clearly explained. Why do you think it is so different with cancer and other diseases compared to lupus/ CTDs?

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Short answer is I dont know. I wonder if one reason is because the diagnostics are less clear - or less widely understood. Cancer is a kind of black-and-white diagnosis based on histology these days, isn't it? SLE and related things require a lot more interpretation. Other factors might include the fact that cancer treatments often involve SURGEONS (or have done historically) - a high status group of medical profession, so what matters to them must be important ;) Whereas our symptoms (like faitgue and brain fog) are often approached from a mental health perspective (by contrast, the lowest status branch of medicine) ....? Related to that, of course, cancer holds out a prospect that the doctor who treats it has a decent chance of CURING you and SAVING YOUR LIFE. What doctor could resist? With us - well, it's a long term, never-ending slog, with little or no prospect of a cure. Who wants to be involved in that? x

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Thanks whisperit, interesting, valid points. I read an article about dementia not being as well funded, researched or supported as cancer. One of the conclusions was that there are no cured survivors to then passionately advocate and ensure improvements for the next generation of sufferers. I wonder if that is similar in SLE/CTDs? That despite so many people helping each other on forums etc, no one is cured so most won't have the spare capacity/ energy whilst fighting the disease (especially in these diseases where extreme fatigue is so common) to also then help ensure improvements?

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Hi Paul with regards to E. I have a strong family history of auto immunity. This factor has always been ignored

I have sat in front of many doctors with visual symptoms that are well documented but because my bloods are not giving a true picture I’m not getting the help I need.

I am in continent during flares, no doctors will look into this and recognise this is really happening to me. I can’t work because of this embarrassing problem.

No will will acknowledge the pain I suffer from in my legs and feet. So much so I can’t consider taking my children out for long walks or a journey to the coast, I can manage 20 mins before I’m in a lot of pain. No doctors are acknowledging this or offering help even though a recent mri showed swelling and tendinitis. I’m not into physical exercise so I can’t understand how I would be open to tendinitis!!!!

I am being medicated , but I feel like they are not listening to how bad my quality of life has became because I don’t have the supporting blood works.

I wish I could be put in a clinical trial for a couple of weeks just so they can see what this is doing to me!!!

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Thanks for sharing this Lisalou, so hard that you don’t feel your symptoms are listened to yet your quality of life is so badly affected.

That’s a very good idea for a clinical trial. A lot of the trials only accept people with certain blood results but maybe what’s needed is some trials that look at the significant number of people with lupus who don’t have the ‘typical’ blood results (or they have other blood markers that just haven’t been identified yet).

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I do feel there is some sort of grey area. Many people I speak to on here mention antibodies for scleroderma but don’t have the symptoms for it 🤷‍♀️ And they get diagnosed with UCTD. I’m no doctor but I see a pattern.

If a clinical trial comes up, they can have me! My main worry is for people like myself, how do we know if and what internal damage maybe being caused if doctors are dismissing us because of bloods.

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My experience is that most doctors and health care professionals just don't seem sufficiently knowledgeable to deal with the intricacies of Lupus; they only know about the 'typical' symptoms, if they know much about them. They either don't consider my Lupus as a possible explanation for certain symptoms, unless I prompt them, or they ask 'When are you next seeing the rheumatologist?'. Quite possibly this state of affairs is as frustrating for them as it is for me. As result I tend to get a lot of bloods taken and urine tested as an interim measure - more frequently than would be the case, I think, were doctors given better training re Lupus and felt on more solid ground. However, despite the bloods, etc, I always feel that I can only really rest easy, or otherwise, after an appointment with my rheumatologist.

So yes, I do think there is a health inequality here compared to many other illnesses and this needs to be addressed, particularly during medical training.

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Thanks MrsMouseSJ, so you think there is inequality due to lack of knowledge and training regarding lupus compared to other diseases? Do you think this is specific to GPs or with other specialities too?

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I think it's probably across the board, Melanie. Over the past six years I have seen a number of consultants - including vascular surgeons, cardiologists, gastros, gynaecologists, a haematologist - and the impression that I have been left with is that these are excellent medics but that they are on unfamiliar ground with auto immune issues. I might go so far as to say that with some of the older doctors rheumatology is seen as somewhat of a 'dark art'. This is merely my impression of course; I have no data to support this.

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Thanks MrsMouse, do you think that although you say they are excellent medics, their level of autoimmune disease knowledge has affected how much/ well they can help you?

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This is a difficult one to answer. Again, I can only give very subjective thoughts. To me, good doctors seek an opinion from my rheumatologist if they deem it necessary. So, for example, prior to deciding to go ahead with my hysterectomy, my gynae got in touch with my rheumatologist to discuss potential complications (I have other auto immune issues, too) before she decided to proceed.

But if a doctor isn't very knowledgeable about Lupus and other auto immune issues then how can they be certain when it is (and isn't necessary) to speak with a colleague who is a specialist in those areas. I imagine there are, for example, Lupus patients who have undergone hysterectomies without their gynaecologists first discussing the issue with those patients' rheumys - have some of these patients experienced unforeseen/avoidable Lupus or other auto immune complications? Obviously I can't answer that. But I do know that knowledge is power!

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A.I think there's a lot of evidence to suggest autoimmune and connective tissue diseases are less well understood and catered for than other diseases, we read about this every day on the forum.Long diagnostic delay , treatments which are not fully effevtive, rationing of more expensive newer treatments a complete lack of support for patients living with on going symptoms.I think there needs to be much more on going support provided patients who survive cancer get this, patients living with autoimmune diseases dont.

B.I live in Wales where I live there's a problem getting suitable consultants so currently my appointment for my autoimmune liver disease pbc is 9 months late it is likely to be 3 more months despite the guidance for people at my stage needing 6 monthly ultrasound and blood monitoring.Having lived in England and Wales I would say my experience of the nhs in Wales is way behind that in England

Furthermore low population means the chances of doctors getting experience in rare conditions are low,despite this I have read on this forum other patients being unable to get referrals to England's centres of excellence.

C.I feel women particularly middle aged women have difficulties in what at the top is still a male dominated profession.The menopause is blamed for everything.I took my husband to appointments so he could back up what I was saying and found it made a difference I was taken more seriously that is completely wrong.There have been studies and books written to show inequalities in outcome in various conditions with poorer outcomes for women because they are taken less seriously or present with different symptoms to men for example in heart disease.I think this is part of why connective tissue diseases are not well treated they tend to be much more common in women than men.

D.a fibromyalgia diagnosis delayed me getting proper treatment for years.

E.I was told my blood markers were negative for ANA and because of this despite other markers being positive, photographs of symptoms and already having a liver autoimmune disease and a strong family history of these diseases that there couldn't be anything else wrong.After years of suffering and getting worse it finally transpired that my ANA test was positive but the hospital had only tested for common ANA, and mine was rare!

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Your thread very much mirrors my experience in every way. plus I have lived in England and Wales. I had to get to a really bad state of health before got help I needed. Still feel not being heard in some areas. x

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Thanks so much for such a detailed helpful response. When you say that A - the comparison with ongoing support is there for patients with cancer but not autoimmune diseases, what sort of ongoing support do you think would help the most please?

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The sort of support which I think would be most helpful would be some type of a centre where you could go where you could have activities to help perhaps either physical help gentle group exercise or walking group gentle paced exercise I couldn't go to my local exercise group I wouldn't be able to keep up with the much older healthy ladies and they wouldn't understand. Also other activities maybe art or craft based could be provided .Somewhere you could meet other people with this type of disease socially to get mutual support and understanding.Finally some access to citizens advice type service , and counselling if wanted.These diseases are isolating, you lose friends, often work which has a social aspect you may need specialised advice about finances, pensions early retirement etc and currently patients are not helped or advised about any of this.I have found the experience of autoimmune diseases to be exhausting, frustrating, lonely and unending and because the diseases are often invisible and people don't understand them there is little to no support from society generally this leaves a gap which needs to be addressed Doctors should be able to refer patients to some sort of support programme.

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A tick of agreement for every question during my journey to diagnosis. Not good.

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I do find there is a lack of understanding of lupus and other autoimmune disorders. However, my GPs state clearly they do not have the training to be able to deal with them and always insist on rheumy advice only. Then chase the rheumies if an appointment is not near enough.

I’ve no geographical problems, I don’t live in Wales, which is a disaster zone for lupies. I have the fortune , by chance, of living in a city with two large university hospitals. The research study I agreed to take part in has uncovered Sjögren’s and scoliosis, the latter of which should be taken into account by my physio.

As I’ve mentioned elsewhere, I’ve had bi polar disorder for a long time, it’s pretty well controlled, some of the meds involved are a mystery to all but psychiatrists, and I see my shrink regularly . He has known me a long time and is not complimentary about body experts because he’s seen me shrivel away. However, being officially crazy (no pussy footing around, I personally prefer to call myself that) means that no medic can ascribe any physical problems to it being in my head. For once, bi polar is a plus!

I do wish there was a controlled pathway as Whisperit has said, or that consultants worked as a team rather than each one focussing on the part of my body they are interested in.

Sometimes it helps more to take a male with you to consultations. I think that women can be fobbed off.

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Thanks Lupiknits, can you explain a bit more about the part where you say ‘women can be fobbed off’? Do you think that is the consultants more likely to try to fob women off or that women are less likely to stand up for themselves and more likely to accept being fobbed off?

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I think that what I mean by women being fobbed off is that it can be easy to attribute a lot of symptoms to hormonal problems before full investigations are made. I call it the “don’t worry your pretty little head” syndrome. I hope this is improving with more and more female doctors. I had an enormous amount of it right into my 30s.

As to not standing up for ourselves? Well, a lot of this kind of syndrome can lead to medical PTSD which makes it harder. It’s not impossible to overcome the fobbing, just by practicing responses to likely remarks such as “That’s interesting. Why do you think x is the answer”?

If all else fails, rant on here and think of rude words 😉

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Rude words are good. 😁

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I believe I've been victim to sexism from both male and female Doctors. ( There's been a lot in the news here ( Australia) lately about Doctor to Doctor abuse ) The females have had to not only get through long difficult degree's and training - but have been so bastardised by the process ( along with having to deal with pervy seniors to keep their career ) that by the time they meet poor quivering me - I get the distinct impression that they think I should toughen up and go away. It's an - I'm weak - they're strong - why should I bother with you kind of attitude.

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Being a middle aged menopausal woman with two mental health diagnosis, I often feel that I shouldn't even bother going to appointments as the judgement is made before I even open my mouth. Not right and not fair. Completely agree with others above about physical dr's getting completely focused on MH diagnosis, and generally being treated like you aren't worth or deserve their efforts. Sadly we sometimes start to believe them too, this is when you stop fighting - I'm ready for the battle now though, so bring on that rhem appointment, however planning on taking my husband along now after reading the posts above. I SHOULDN'T HAVE TO, and I don't want to but anything that helps even if it is going against my principles.

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Thanks poppypig, is there anything specific that’s happened that’s made you feel this way in appointments please?

Good luck with your rheumatology appointment, I really hope you get some answers and help.

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Just as soon as you've been involved with MH services, you are then seen by most health professionals as one sandwich short of a picnic and everything you say must be related to your poor mental health.

In fact I've recently asked to see my mental health records as self discharged nearly a year ago and wanted to put the whole sorry experience behind me. Cmht refused to give me their records, and that is how you are treated by most health professionals - like a child.

Worryingly I've only just sussed that after reading fanwheelie comments below, all this could actually be directly related. My symptoms sound very similar, with the hypomania. So why don't psychiatrists know this??? They are medics first and surely should rule out physical issues first, prior to dishing out their "non additive" medications.

Sorry I know that is a bit of a rant but best out eh!

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Definitely best out and we’re the ones to rant to on here as so many have similar experiences.

If your mental health symptoms started at a similar time to your other lupus symptoms, that would be quite key information for your rheumatologist as so many people have misdiagnosed/ undiagnosed brain/ nervous effects directly from the lupus. If you go on PubMed and look up NPSLE you will find a list of symptoms and descriptions of NPSLE which might help you see if it fits before you see your rheumy. I think fabwheelie has posted a list in response to one of the other study questions too.

I have NPSLE with a variety of odd symptoms but my rheumatologist assures me it is all the lupus and it shouldn’t be at all embarrassing or treated by other Drs as less important than any other lupus symptom. It is very poorly understood but sharing the details with your rheumy may be some of the key pieces of you getting a diagnosis and the right treatment? My NPSLE symptoms are very well controlled when I’m on 10mg + steroids and biological treatment so I wonder how many other people who have been given mental health treatment actually would benefit from a trial of steroids/ immunosuppression to see if the brain/ behaviour/ cognitive problems are directly from the disease. I won’t go into full detail here but if you want to message/ email me please do as I’m sure there are many of us with lupus affecting the brain in various ways, it’s just harder to talk/ write about maybe.

Definitely need to do a research study on the patient’s experiences of it!

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If I had a husband - I'd bring him too.

x

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That made me chuckle. But you get to be a starfish in bed every night, and no snoring, or anyone to moan when you switch the light on for more eye drops. There are perks both ways 😁

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With kidney stuff I wee a lot at night and I had one ex that would tell me "he would be the only man stoic enough on the entire planet to survive observation of such a phenomena " 🙄🙃😁 I hope he's OK.

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I think that drs treat you differently when you have mental health symptoms. For example most of my poor / bad experiences have been with mental health professionals. Such as one psychiatrist who spent 20 minutes quizzing me on my first hypomanic episode why was I in Yorkshire at the time, ( My first hypomanic episode happened when I was visiting family in Yorkshire, so I was dealt with by NHS there) .... I mentioned my family / originally being from there, but he didn't seem to get that I'd moved away as a student at aged 18, and mention of my family just prompted questions about what my relationship with my family was like, what was my family's mental health history like, (including something that then triggered me very upset as my brother died accidentally at 24 years old and his mental health was a contributing factor, not related to my issues, not helpful for drs to quiz me on, not helpful that drs then note I'm upset, aggitated, etc at the appointment) ..... All this questioning was totally irrelevant to my reason for appointment with that psychiatrists. Yes I know they want a medical history ,/ idea of why you may have mental health issues, but at the time I just needed my medication sorting out. I'd had involvement with mental health services over 12 years at the time of appointment, so going back over things that should be on my record and were so long ago really just took up my energy, and my time, and resulted in "rushed" final 5-10 mins sorting out why I was seeing that psychiatrist

I've also had poor experience as initially my hypomania and some previously reported episodes of depression resulted in for many years mental health services treating me as if I had bipolar disorder, not acknowledging that my mental health is very likely to be part of neuropsychiatric SLE (NPSLE) symptoms, as is now believed. With the "bipolar" / 'I get depression" label it always made it difficult to discuss fatigue symptoms due to my lupus with the mental health professionals as they automatically defaulted to the "fatigue is due to depression episodes" (I can usually tell the difference, but they do treat you as if "the crazy mad one" cannot possibly be reporting symptoms correctly, or they go the other way and say you're getting too "obsessed over is there a pattern to your fatigue" if you show them that you've been monitoring sleep, fatigue, stress, flare ups in other Lupus symptoms, in attempts to distinguish "Lupus fatigue from "depression fatigue")

Final point I'd like to make is that I get treated as an intelligent person who understands my conditions, my medication etc by most of my drs but not so by some mental health professionals. For example it's totally accepted that I dose my pain medication according to my pain levels , and Drs never question that I "self medicate according to symptoms", and they know that I understand not to exceed certain dosages that could be 'dangerous' eg my paracetamol and codeine amounts, trust me to seek further help if I need to etc. However at one time I was taking my mental health medication "as I needed it" and none of the mental health doctors liked that at all, yes I did understand it probably wasn't a conventional way of taking that particular drug, but a "daily dose" would just "zonk" me out too much, and at the time I was trying the "dose myself regime" I did have very good insight into my symptoms, and if I needed to refer back to GP or mental health services

I also think people with Lupus and chronic fatigue issues get treated with inequality by DWP for purposes of social security benefits, but I think that would need a whole seperate area of community involvement research, as the system in general is a disgrace, and in particular they don't really assess people very kindly when you have invisible disabilities / symptoms

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I really think it's time that more effort and education is put into neuropsychiatric lupus as well as more research.

It's such a huge issue for so many of us - including me - but it's such a taboo subject to speak about.

On behalf of me on the other side of the world ( Australia ) - thankyou for speaking up about it. Its not fun recounting this stuff. These issues so desperately need to be achknowledged and looked at propperly and without voices like yours this wouldn't happen.

Sending you as much love and solidarity in you're struggles as I can muster via an internet connection.

I hope you're ok after that post. I'm a bit wobbly after mine ?

xoxoxoxoxoxox

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For some time I’ve been very aware of how my moods fluctuate, I find it difficult to live with and I know my children do too. I know it’s this illness because I have other symptoms at times of low mood. I’ve been on antidepressants since January and I can not see any change in these fluctuations. Like today , it started ok but as the days gone on my skin is starting to flare and fatigue is kicking in. Now I’m snappy, miserable thoughts, feel like I can’t do this anymore!!!! I find it so difficult to try and understand how this all affects me mentally. I don’t feel like this during every episode but when I feel like this I just want to give In to those doctors who think I’m mental and ask them to lock me away!!!!

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The disease definitely directly influences the brain and mood in many people so you’re not alone in this - added to the feeling so poorly and not getting quick answers and treatment too.

I was told if steroids improve the mental health, mood etc problems then it points strongly to it being a part of the disease.

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Indeed, my family keep politely reminding me how much better I was on the steroids. Now they just moan because I’ve gone back to my old ways because gp wanted me off steroids.

I did get a 3 week course last week from dermatologist as I was so desperate for respite. I actually said to him with this illness my steroids are how I’d imagine being dependent as a heroine addict. They are my only route to respite at this moment in time. We are all aware of the long term side affects but when you feel this bad it’s so worth the risks and the dreaded weight gain x

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Thanks, yes these days I do fairly well. My lupus is under "good control" and that in turn has a big impact on NPSLE symptoms, as I tend to get them worse when my Lupus flares up.

Also depression is very rare for me, and even rarer now I've "accepted my Lupus life"...... Some of my worst mental health episodes were linked to "grief" such as coping with diagnosis, coping with my "limitations", hypomania not accepting I was not well, thinking I could "force myself better" if only I did X ,Y or Z etc, depression because I had to give up a career I loved and take ill health retirement (including dealing with getting "dismissed due to my health" whilst awaiting the medical retirement decision).

I do think it's important to speak up about mental health, it's just as important as the physical.

I also think newly diagnosed should be automatically referred to counselling services

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I’m just waiting on cbt under the nhs x

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It is so important to speak up but I won't be mentioning anything other than my mental health is now perfect at my rhem appointment as will they will completely dismiss my physical symptoms so just darent risk it. And that is sad and selfish on my part, as it certainly doesn't help others who follow me but I just want a better life.

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That's so sad Poppypig I do hope my experience with the mental health services hasn't deterred people as personally I've found my GP and rheumatology team supportive of my mental health issues ( but poor attitude from psychiatrists)

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Not at all fanwheelie, I'd already decided not to mention it, as want to appear the strong woman that I am, as I turn somewhat pathetic when talking MH. but that's not to say I won't mention it at a later date.

Think I was in complete denial that these psych problems could be all related until I read your post and yes it was shock because I just want to stop these highs and lows (I do love the highs though!) But then we know what follows... My GP is completely supportive now after seeing me so physically unwell and I feel she believes me now, so fabulous to have someone on side. Please don't feel bad, as I have found these research questions so helpful to me and I know I wouldn't have been so honest if I didn't think it would help others. I'm certain that all you would say the same, it is also amazing to have you guys on side.

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Thanks for sharing this fabwheelie, so sorry you had such a difficult appointment. Yes very good point about welfare changes and the invisibility.

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I can definitely relate to A, B & E.

Poor Melanie has had lots of info from me and my members, so I probably don't need to say much more.

But lupus raises many issues across the board and I struggle with this, it's so unfair and unjust that on top of everything else, that we have these battles to face.

And I find it shocking that there is such a lack of awareness and education amongst many rheumatologists in 2019. Some doctors are stuck in the dark ages with their attitudes towards this illness. As most seem to deal mainly with RA, that is their area of expertise. Many seem to think that as with RA, every lupus/sjogren's flare will show in the bloods and we know this isn't right. So, normal bloods and then dismissed as imagining things.

You never expect this when diagnosed with a chronic illness. You expect the NHS to take good care of you. It's very difficult to then realise that with lupus, that doesn't apply because you live in Wales.

I think many rheumatologists could learn a thing or two, just by coming here and reading our posts!

Wendy x

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Thanks Wendy - yes we are going to ask rheumatologists to read these survey responses. The ones I’ve spoken to definitely care very much about listening and helping improve the situation (and have been shocked and saddened at many of the difficult stories). I think perhaps the very good ones don’t necessarily see what happens in the less than good appointments and patients don’t always feedback to the Drs in the same way as here where everyone is very open?

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I dont think we should omit what's likely one of the biggest areas of inequity, which is related to class and wealth. Had I not had several hundred quid to spare, I would have been waiting for an intial rheumatology assessment for at least 15 months - my first referral was to caridology (waiting time 9 months) and it was only after onward referral (a further 5 months) that I saw a rheumy. Post diagnosis, I have also benefited from having some money to spare - to buy supplements and home test kits (that's how my adrenal insufficiency was detected).

On top of that, it seems to me this forum demonstrates that we have to have a formidable amount of confidence to persist in the face of unhelpful clinicians - often high status consultants, obstructive nurses and so on. There's plenty of evidence that being middle class helps patients get access to better care and/or to work the system to their advantage. It seems to me that the opacity of the SLE scene is precisely the kind of world that operates to the disadvantage of people who are less able to challenge consultants, use patient rights legislation and so on. x

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Well said. Very sad but true.

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Very good points, thank you whisperit

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The Nephrologist who is essentially in charge of my SLE care - will not speak to me in-between appointments if I get into trouble. The reason for this is that I'm a public patient. I found this out not so long ago when the receptionist asked - "Do you see her privately" I told her I was thinking about seeing her that way - I got through immediately but before I could speak I was met by a gigantic abusive rant that rendered me less able to speak so I was hung up on. Unfortunately this woman is one of the few well qualified Lupus specialists here (Australia) so I endure her. I directly told her during an appointment - no witnesses - that I would pay to see her privately but given I'd well and truly seen through her - she refused and has been stunningly pleasant during appointments since. And its amazing how much better I do if I flatter her and her medical skills.

But I still cant contact her in-between appointments. I have to write a letter - and the letters I get back are - Go meditate, do some yoga - absolutely ignores everything. Then when I see her - she's very effective.

Unfortunately characters like this believe they're entitled to more money because they see themselves as extraordinary beings and this is their real worth. My own GP dismissed her as a narcissist and not to take it personally. None of them seem to understand that I don't take it personally. I just want to stay alive.

Another GP was good enough to tell me outright that this is the way the system is going now. You cant get treatment unless you have private health insurance. I'd be homeless if I paid for that - so inbetween apointments I just hope for the best.

Because of these changes - my GP has gradually taken on the responsibility for some of my SLE care. He's not qualified and I'm in a bit of a mess now because of his good intentions.

Were meant to have the same sort of public system as the UK. Its a dirty little secret here that more people are beginning to see through.

I'm at a point where I'd love to be able to be assertive with my Doctors and say exactly what's on my mind - but I feel like I'm now a charity case and have to hedge my words in order to keep them pleased. I know from past experience that they can totally withdraw care if they feel threatened by me in any way. Having to see them so often - it does nothing for my sense of dignity or self respect. I feel like my soul has been destroyed by the humiliation I have to endure to stay healthy.

I hope this kind of erosion of the public system isn't slowly creeping up on you there.

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Sorry to hear this freckle. In the UK you can definitely access referrals much more quickly privately. I’m not sure whether standard of care is always better privately though, maybe just depends on the individual Dr? I know some people get very quick helpful inbetween appointment advice etc from NHS Drs but some don’t. Another inequality I think as it’s so important to know that help is available when you flare which is mostly very unpredictable.

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From my experience, the standard of care here is about the same between public and private. Good, bad and in-between. it still depends entirely on the morality, mental health and skill of the Doctors.

Here some of the more ambitious and better qualified Doctors are to be found in Public hospitals because of their relationship with education and research branches of the system. But its much quicker to see a Doctor and have non urgent surgical procedures done if we have private health insurance - or pay for a money gap ourselves.

From what I can gather from some of my relatives who have total private health insurance Doctors seem generally way more pleased to see them - even amazingly charismatic. But these reports come from people who don't have lupus.

I do have an Aunt who has Lupus - but she seems to just be fobbed off with just a lot more manners. She see's a GP who tells her to come back - a little too often - dealing with just one tiny issue each consultation. I think this is probably to get more money out of her . It makes the whole picture for her a little more confusing. She's quite wealthy and a bit of a snob and is too easily convinced that she's getting 'nice service' - but it doesn't mean she's getting better medical treatment.

In reality over time - she's fared just as badly - if not worse than me - in fact spectacularly worse at one stage. They weren't watching her bloods / immune suppression and she caught a bug that she couldn't fight off. She ended up in a hyperbaric chamber in Melbourne due to delays in treatment - followed by being ejected from the same local ER I totally avoid now. She was falling unconscious - with her entire family telling the staff - "she's falling unconscious !!!" Unfortunately she was still just able to speak and said - " no I'm ok. " They had to take her home until she fell totally unconcious. It's a miracle she managed to survive.

But the excuses for what happened surrounding this are obscene, polite, respectful lies. One from - a friend of that branch of the family - GP - covering her colleagues saying " Doctors are trained to listen to the patient - not their family members "

ps. Me driving 100km to a larger - better equipped ER didn't help when I couldn't breathe easily. Dangerously low iron. (and lymphocytes a bit low) Nor did a new GP or top notch Melbourne Rheumatology department. Psychological help was suggested.

I've never been offered an explanation for medical stuff up's in my life. In a way its a good thing because I've been forced to look at pathology and Doctor correspondence myself. But this is always an extremely traumatic thing to do - and while now I can recognise when my pathology numbers are off - I don't always understand enough about the broader medical context of this - which can freak me out - and takes a lot of 'convincing' on the part of my GP that its OK. But it does force him to monitor my pathology when I pick something up. Helps with preventative medicine.

: )

ps. My GP clinic is a private one. But my GP takes a lower public rate to see me. Three quarters of his colleagues - who Ive dealt with - were not of a very high standard at all. Didn't make much difference what the bill was.

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I can relate to A, C, D and E and what I'm going to say will cover those categories.

It's definitely the case that lupus and other CTD's like sclerodermaa re much more complicated illnesses to treat than RA. Specially the sero negative types. Lupus has also lost out in research and development of new treatments compared to RA as well. The newest treatment for lupus Benlysta is the first new drug in 50 years to be developed for the illness whereas there have been many more biologic treatments for RA. RA is easier because the inflammation shows up readily except for sero negative cases, and the Rheumy knows to target it fiercely in order to prevent joint damage. In lupus there isn't the same damage so Rhrumy can be reluctant to treat inflammation as he doesn't want to over treat and cause unnecessary side effects!. Get the balance wrong and we can end up not being treated enough and still suffer with the pain and inflammation!. Also we can be made to feel we're not as bad as RA and making a fuss as there is no lasting damage and any changes like tendon tightness rectify themselves with the right treatment!. Those of us like me whose bloods stay stubbornly negative despite obvious symptoms are at the mercy of an understanding Rheumy who has the confidence to treat empirically and not rely on bloods solely!. There aren't that many who do so if we find one , we have to stick to them like glue!. A lot of Rheumy's have admitted to me how difficult lupus is to treat compared to RA!.

I can add the experience I'm having now with having to go to fracture clinic which is run by the Orthapaedics. When ever I've said I have lupus the surgeons have rolled their eyes as if to say oh not that difficult illness. A few years ago now an Orthapod said ' lupus, a disaster, one minute it's controlled the next it flare up' I didn't know what to say as I thought yes I'm living with this on daily basis!. He said you come and see us when it flares and we'll sort you out!. This was if ever I needed a hip replacement!. Luckily I haven't!. I've also found doctors to be very judgemental and have found some new ones do think I'm weird because I'm not married with a family or have had children, living at home with parents and I'm middle-aged. There's been a feeling I've got when questioned that they feel this way!. I wonder if others have had this too?. I've also found it hard to shake off like others the 'all in the head' inference that Fibro was at the start of my illness. It's taken years and many new symptoms to get better recognition from doctors which I have now but whenever I go to a new Cinsultant who looks back over my file I dread how far he'll go and am always on my guard!. It never leaves you when you have bad experiences!. I've had a lot. I guess that's good as your always prepared but sad too that it will always affect us.

Gender bias is definitely alive and well in the NHS and wider world. Caroline Criado Perez has written a book called ' Invisible Women' that has stayed in the top ten for a number of weeks and she highlights a lot of areas where women miss out. A lot others have touched on here. There was also an article in the I paper that openly admitted when it comes to treatment for type 1 diabetes women lose out in care to men!. That was a surprise and also how more is being written on this gender difference which is great to see.

Sorry for long post but these categories have really got me thinking about my own experiences. Hope they're helpful for the research. X

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I think that a lot of people underestimate that women caring for elderly parents and not being able to have equal access financial independence because of their unpaid social roles is a core feminist issue.

We seem to have to be a good little economic unit to be recognised as worthy.

I've tried my best - but its just never really been possible for me to work for very long periods and this has put me into an on and off family caring role. Now I can't work at all and can barely help my family which is causing tension.

Its horrific that society has become so far gone that just being with family is so misunderstood. Its an era of scary level massive social change and I'm just a little terrified of it.

(I saw on the news that they re- animated a dead pigs brain and after reading up on it - and all the potential good it could do in the future - it still gives me the willies)

Were having a housing crisis - and a lot of the women in trouble are middle aged, divorced - and fit exactly into the unpaid - looked after family all their life - category - and have either been estranged - or - don't want to be a burden on their adult children.

I'll be buying 'invisible women'

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It does seem so unfair how women are caught out as you so eloquently describe freckle and marginalised. We've also got women having to work longer to secure their state pension as they've put the retirement age up again for them!. Many won't be well enough to enjoy what they've worked so hard to accrue!. It's awful!. I'm sorry too you are struggling to cope with your own health and care for family members! It's a desperately stressful situation that I hope you can find a way forward in. . I'm in a similar situation now my parents are older and are unwell and I need to be able to do more but can't and feel guilty about it etc. I do push myself and then regret it and if really needed I just forget myself and do what's required!. It's a tricky tightrope!. I do hope you enjoy the book, let us know how you get on with it and TAKE CAREX

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Thanks misty - that is so useful to get your perspective

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Glad it's helpful for your research, Melanie. It took a lot out of me to write it so I'm glad it's useful!. X

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In reply to your survey .

I feel that people I have come across do not know enough about this illness , and just take you on face value , as you look well . I have had to give up working as an interviewer due to the many many problems with my health . I applied for pip and felt they had not a clue and put down I look well with good complexion , I was sat under fluorescent lighting 😡.

Also feel like my age of 58 gives me a lot less respect of services from the NHS . It’s almost as if I have to beg for a needed scan. Ive also got severe trapped nerves in my cervical spine , my treatment I feel is delayed due to doctors not sure if my arm pain and finger numbness is related to lupus or not . I’m still not been tested after nearly 2 years . I don’t feel confident in seeing doctors . I feel like a nuisance all most like what now .!! . I feel there needs to be more understanding in society and awareness , I feel like an outsider in this life .

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I'd crowd fund an ad with Hugh Laurie in it - doing the 'House' thing - only this time saying what Lupus 'ISN'T'. I felt like the only person on earth who hated that show. I believe Doctors loved it. Full of seemingly rational - high IQ assumptions about patient lives.

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I have SLE. For many yrs. my doctor visits are frequent. UTI’S, sensitivity to many medicines, environmental, & good allergies. Hives, rashes etc depression, anxiety. Digestive issues etc some Drs are tired of seeing me. They don’t believe I can have so many sensitivities. ie: I can’t take statins . I have high cholesterol. Dr wanted me to try again! Retained much h2o. I’ve grown tired of Dr s & medicines.

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