Hello, some of you may have seen that we've published research on medical relationships, misdiagnoses etc, and recently on COVID, including the impact on our care, and discussing shielding etc
The research has been very well received, and the BBC is interviewing me (and possibly Prof D'Cruz as he co-authored the papers) at the weekend in order to raise more awareness.
This is a great opportunity to raise awareness in general and I very much want to represent as many of us on this forum as possible. It is only a few minutes zoom interview (if he can fit my large steroid face on the camera!) but I am going to try and include the following points:
1. The diagnostic difficulties, misdiagnoses and the damaging impact
2. Invalidation and invisibility - both from society and clinicians
3. The importance of trust and medical security and how we need clinicians to be: Available when we need them, BELIEVE and validate symptoms and give consistent, compassionate care
4. The impact of COVID on most people's care - cancelled appointments/ tests, difficulty accessing help in an emergency, disparity in that some people have still received very good care. Impact of feeling medically supported on many aspects of mental health and wellbeing.
5. Shielding allocations and how some people weren't included and the impact that is now having on position in vaccine queue.
6. Long covid clinics - How we need that support for lupus and related disease patients too. How many of us live with 'long covid' symptoms all the time and have received no/little support.
Please can you let me know which of these you feel are the priorities to include and anything else you think is important?
They obviously have their own agenda and will cut the interview so I can't promise that everything will be included but they've said they would like to follow it up with a film including more of us and the impact of the disease on our lives so lots of opportunity for awareness raising.
Thank you
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MelanieSloan
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Thanks for your continued support Melanie, please know how much we appreciate this. All of your points are of supreme importance but prioritising them is so tricky, all relevant but for varying degrees amongst us.
I feel sure the BBC will steer in the direction of Covid so the fact that our day to day symptoms mirror those experienced by the Long Covid sufferers, will most certainly be pertinent. Also the deep unease felt by so many of us, knowing that our usual autoimmune response mirrors the oft publicised covid/long covid symptoms despite the fact that our care has been dramatically impacted and to some degree cancelled albeit temporarily.
A sunny day or a rose thorn in my finger will send my immune system into overdrive, what the heck would covid do? It's a real worry and yet I bet few of us have had a conversation with a medic about this. Another appointment cancelled this week and of course I totally understand the necessity of that and realise that this is across all specialisms, it's a horrific situation, but it mirrors the sense of lack of support so many on here feel as the norm.
Thank you for fighting our corner and send our thanks too to Prof D'Cruz, our star doc!
I think this is a very good list. Good luck with it. Any chance of a heads up in advance of the interview ? I never seem to find time to watch telly and miss all kinds of things as a result.
Good luck Melanie I’m sure we would all love to see your interview, it looks as if your list is a good one. Here’s hoping someone out there will listen and take note of what Lupus is all about and how it affects different people and make some relevant changes going forward regarding diagnosis and long term care. Take care
Hi Melanie, great you are getting to do this...we need your voice. 😃😃I feel strongly that they need to understand this illness better and know just how debilitating it is. ( I can’t work for example) it can flare at any time, it’s invisible, most people say you look well( make up and a haircut hide a lot) the effects on mental health as you are unable to do what you want to almost every single day. The fact that if you don’t take care of yourself it gets worse ( my sister died if it) and it runs in families has a string of other issues like vb12 deficiencies and thyroid problems.. it can be fatal.
Thank you so much for doing the interview, will you post when it is on air. Xx
Thanks Bellissimo and MelanieSloan You have explained it perfectly. I find the unpredictability of it very frustrating, the amount of events I have had to miss due to a flare up. My daughter is trying to organise her wedding and my instant thought, which it shouldn't be is I hope I dont have a flare up 🙁 xx
Hi, I feel your pain.. I’d a wedding to attend in Austrailia 2019 and I was dreading it which is not normal. My advice is rest, rest and more rest the full month beforehand if possible, get good sleep and don’t over do it and you should be fine. I’m at the stage I’ve learned to pace myself or I’ll flare so I do everything possible to rest and not stress. Lupus can only cope with so much ...hope you have a wonderful day xx
Superb! ALL of the above plus education for GP's and specialists on identifying, diagnosing treating and managing autoimmunity...after all, a comprehensive guide for long-covid was produced by the BMJ within a month or two of it being recognised as a separate entity!
Ohh, what a super opportunity to raise awareness. Great, thank you! I am in the process of being diagnosed. Not the fault of the great Rhuemy team who look after me but the disease continuing to manifest itself as the year goes by. You have produced a very comprehensive list. When I read about Long covid clinics in the news, I did jump up and down and howl what about us!! What a missed opportunity it would be if research, facilities, expertise, centralisation of multi-professional teams in hubs, quick access to support (you'd hope) etc - were not joined with AI disease as appropriate. Like the Nightingale hospitals - I do wonder who is going to work in them and at what cost to other departments.
Hope that is the sort of thing you were looking for.
Great news Melanie Do think that employment and benefits difficulty, - little research Ito effective employment support and then people have difficulty getting benefits and often deprived of income for long periods of time - rehab as you have said - with similarities to long covid especially fatigue not noticed in past (and may not be in future)
Diagnostic difficulties would be a priority as so many people struggle on a hell of a journey The list is great and certain things will all be of different priorities to individuals. I’m sure your face will look lovely 👍 good luck 🙏🙌🏻
This is amazing, thank you so much! Your list is great. As you say, they will pull it into covid so I think your best turning the angle over and comparing long covid with lupus and on the positive side, now long covid has become immediately recognised and understood this should herald the same (plus more funding , recognition and research) for lupus - who's sufferers don't even get free prescriptions!!??? That shows how little this disease is understood and recognised. Can you let us know when it's running? Thank you x
Living in Scotland I'm very lucky to get free prescriptions. It would cost an absolute fortune if I was living in England. Is there no 'season ticket' type of thing for people who have to have lots of prescriptions? I know there used to be, not that that's the best solution. If diabetics can get free medication then, surely, other conditions that aren't curable should have the same priority?
I agree. We should get free prescriptions. There is a season ticket solution - I think it is about £150 p/year. I have a friendly GP who gives me 3 months worth of medications so the saving wouldn't be worth it.
Hi MelanieYour list sounds just right and as others have mentioned I guess the angle of the interview will be COVID related. As all your points are pertinent anything you can mention will be worthwhile. Those sort of interviews are scary, go for it! Good luck.
How exciting! I wonder if the diagnostic difficulties you plan to start with could roll into the Long Covid point possibly?
For me I think point 4 would be the most important. Who decided to redeploy rheumatologists and neurologists for Covid critical care and what they expected to happen to their patients as a consequence? To me this raises the need for more rheumatologists to come out of medical school and much more focus on the rare rheumatic autoimmune diseases because, apart from ruling out Lupus, I’ve never had a GP yet who knows anything about mine.
Specialists in rare rheumatic autoimmune diseases are almost impossible to access and someone on a scleroderma group I’m on said that she was told it was a “heartsick” diagnosis as there are no treatments and her prognosis was bad due to pulmonary hypertension. Her only treatment for PH, iloprost, had been stopped due to the infusion facilities being turned into more ICU. I think this was in or near London.
But also the link between infectious diseases and rheumatolgy -regarding understanding the immune system better and the use of our MAB drugs - is probably why they’ve been redeployed and aren’t available to us now.
I feel they could be learning so much more about Long Covid from our health stories and from researching us rare birds. Maybe this is happening in the centres but in the devolved areas it’s really lacking.
Well done for this work our Melanie and good luck with the interview! X
Wow !!!! Congratulations for getting the issue to the BBC - and a film.
That's absolutely brilliant 😁😁😁😁 I'm so happy I could pop.
***We need our own specialist discipline*** ( who are psychologicaly screened for the job )
I know it will be hard to cut through the pandemic but you could try some blunt sharp messages. e.g..
- we've been dying alone for many many years from this illness and will continue to do so long after the pandemic is over unless (we can stop (Doctor abuse).......obstacles.
It's one of the few illnesses that's compounded by being driven to mental illness - by chronic ( narcissistic 😁 ) projections from Doctors - and then being written off as hysterical after they do the damage.
Dont know if you have numbers - but - you could talk about suicide - suptle forms ( people not taking medications - or stopping Doctor visits due to burn out ) to active suicide.
Praps emphasise the less worthy of care issues. Given a lot of healthy people have thought about ER's potentially overloaded with Covid and being left without care:
(any stat's on being turned away from ERs - Doctors ( and the outcomes of this ? )
Unfortunately I have a new personal stat. Two years ago I went to a Neuro department - due to deteriorating memory and after being told I was too stupid to understand my own symptoms - I managed to get a MRI that was lupus normal. I was turfed out with a large essay sent to my GP regarding me 'putting on' symptoms - and Somatisisation and so my GP has acted accordingly for the two years since without me realizing at all - the not realising being the dangerous part. I was just plain lucky that a new Rheumatologist thought it might be worth a look again ( because I mentioned an Occupational Therapist who works for my brother had noticed a decline in me ). Someone else's observations are always more worthy than my own.
I've just had a MRI with demyelination protocol and I've been left with a sizable chunk of white matter damage. I now have the attention span of a gold fish.
I wasn't flaring over the past two years. I'm always very sero - positive. ( still trying to get a totally accurate diagnosis ) perhaps sticky blood ?
What gets me is I don't think one Doctor has ever really sat down and asked whats actually going on in my mind. They just assume. Unfortunately they also assume I'm not worth the effort.
So go get them !!!! ✊
( Once I get a clearer diagnosis for the neuro issue ) I could send you the paperwork - letters - etc. for future research if you like. The Somatisisation essay is an astonishing read. I had a pretty good email arguement with him afterwards back and forwards - could be helpfull ?
............
It might be a good time to bring it up Class, race, gender - neuropschological status.
A slow motion deadly ' triage' that silently go's on behind some very genteel closed doors. The quiet pandemic ?
Could also speak about medication making us bonkers - and then diagnostic overshadowing following this.
Totally with you on the race side of things. I was told the other day by an eminent rheum that people of African American extraction usually have the worst prognosis with Lupus and Scleroderma. So there’s a BLM aspect to this similarly as with severe Covid
Yes - definately. I've seen lot of online studies overemphasising DNA differences - and creepily- so long ago (1990's) in history- some gross racist assumptions about lifestyle differences contributing to Lupus outcomes. Nothing is examined on how Doctors react to people that don't look like themselves.
I'm so sorry about your neurology experience Freckle, so awfully damaging when we get these types of misdiagnoses and sadly still so common. Awful that damage has to happen - and show on tests - sometimes to validate what you knew long before.
Yes, putting all these misdiagnoses letters together is a fantastic idea for a very eye-opening educational study. I'd have to get approval from the University ethics committee before being able to use any letters and it might be a difficult ethical issue as could identify patients (obviously we remove names etc but the doctor may recognise the content of the letter). I'll have a think on the best approach but definitely an idea for a future study.
This is a very insightful comment you made Freckle 'A slow motion deadly ' triage' that silently go's on behind some very genteel closed doors. The quiet pandemic ?'
Again well worth exploring in studies and possibly a very apt title. Thanks for all your input with feedback and ideas for these studies - together we all can and WILL make a difference
Thanks Freckle, I'm OK thanks, ups and downs like most of us but hoping for a good phase for a while. Not sure about superbug, it's not causing any problems but think it's still there quietly! The hospital have it on my notes and said I'll have to be isolated in hospital every time I'm an inpatient as can take a while to be clear.
Hi Melanie,I'm very glad that superbug has decided not too mess with you and will continue to take a peaceful holiday until the little bludger takes permanent retirement. My Dad had one that became a little feral, but antibiotics easily took care of it and he recovered well.
Feeling a tad wonky and deranged here - sometimes it hard not to loose perspective when an unexpected diagnosis is thrown at you suddenly. I'd momentarily forgotten that I've been in this situation many.......many times and have came out the other end and managed to heal and adapt. So - like you - hoping for a better phase soon.
Again - Congratulations ! You've done so well and achieved so much for us all - its amazing ! I hope you can get more opportunities to get out there and speak.
Also hoping you're taking some time off to look after yourself - out of hospital.
Oh...ps. I used you're research paper to apply for a government disability service here (National Disability Insurance Agency)- that I thought I had absolutely no chance of getting. You're study really helped to explain and clarify my situation and needs - and I almost fell over backwards when I was placed on their books - (pretty much for life).
They're also funding an advocate to go in with me to Doctor appointments - which they said is un - usual for them but they thought it important enough given my situation. My advocate's a - time and date noting pit bull. An ex social worker who's absolutely tearing a hole through them.
: )
So another thankyou !
Wow great! Let's us know when it's on. So many things are important! Most if us loose our jobs and receive no form of disability! So we trudge on with work! Rheumys do not listen to our personal illnesses they just lump us in or out. Or worse diagnose us then years later remove that diagnose. We need specialists lupus speciists not rhuematologists! Oh and I agree we should of been having all this help thrown at us like long covids are having thrown at them! And they have the nerve to contact US and ask US to help the long covid suffers??!!!! Where is our help??!!!
That is wonderful news Mel. All the points you list are important to all of us so any that you can get in will be amazing. Thank you so much xxx
That must be harder than I can imagine for you.
My own husband is awaiting “urgent” cancer tests but is conflicted about having hospital investigations just now in case he gets Covid of brings it back to me as a CED shielder. His GP did recognise this conflict between the need to know and the need to avoid Covid.
Thanks so much for doing this! For my part, please can you highlight this as much as possible:
"Long covid clinics - How we need that support for lupus and related disease patients too. How many of us live with 'long covid' symptoms all the time and have received no/little support."
There is no preventative care in this country. It's all reactive. Other countries work with lupus patients through a holistic approach (rheumy, dermatologist, cardiologist etc) who all communicate with each other and whose findings are shared in order to prevent progression. Also there's strong training in how to communicate with patients. Here in the UK it's all reactive and paternalistic so they wait to monitor us closely or holistically till there's something very wrong with us. That's not only bad for the patient but also bad and short sighted for the NHS as with decent preventative care we're likely to be less likely to need serious nhs intervention or can stave it off for longer at least. The paternalism is bad because communication of symptoms is key and extremely important in the rheumys ability to spot problems... So why are so many rheumys so bad at it!?!
Thank you everyone for your very helpful feedback and suggestions. I will do my best! I'll also let you know when it's on air - I think he said it will be on regional news and the BBC website.
Is there a link to view the interview? Dr D ‘Cruz dx’d me oh so many yes ago. I’m forever grateful to him and Dr Hughes (when at St Thomas’). Been downhill for me treatment wise since they left but that’s for another post. Well done on your work. I look forward to viewing and keep up to date Thank you x
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