Link to BBC interview on lupus that was aired last night

[MelanieSloan]

Hello, here is the link to the interview that was televised last night

youtu.be/XqmyKWiEF4w(Not working as expected?)

Sorry he cut quite a lot so we didn't get it all in, but hopefully enough to raise some awareness.

You can share that link with friend and doctors to get some more understanding!

[Barnclown]

🤗 GRRRRREAT interview: you come across as a TOTAL media NATURAL ...you communicate all the important points BRILLIANTLY without missing a beat...TAKES MY BREATH AWAY👏👏👏👏👏💐💐💐💐 🤩 the work you valiantly undertake on our behalf despite being so extremely unwell yourself is HEROIC...can’t thank you enough for EVERYTHING...am off to share this link PRONTO!

❤️🍀❤️🍀❤️🍀 Coco

[Cathyan]

Melanie really well done. Thank you for posting the link, and thank you for all your work on this. Knowing how limited our energy capacities are, this must have taken a lot out of you. Really appreciate it.

[svfarmer]

Thankyou x

[daisydayz]

Excellent Interview once again🤗so informative. Hopefully so much will be learnt from this.

Very well done & thank you for sharing.

& please take care yourself💜💜

[Hidden]

Great interview Melanie well done you!

I have to say I’m feeling quite emotional today already - having phoned my rheumatology Helpdesk to ask when I might expect a date for next phone review only to be told that my rheumy and most of the department has been redeployed to Covid critical care - only one duty rheumy covering my very large area of Scotland.

I have a new and worsening rash on my face so I did want to try and get some steroids. I was due to be phone reviewed again this month but she said that won’t happen as the backlog is massive now.

They said patients now must phone GP to discuss worsening symptoms so they can write on our behalf using a special portal.

But my GP practice is totally on its knees due to deep snow and phoneline down plus still doing vaccination clinics daily as priority.

Abandonment is vey real and a FB friend from our local group posted about 2 of his friends who have just died from Lupus in his area. I can’t say I’m surprised after what I’ve just been told by the hospital.

So thanks from me too. I don’t officially have Lupus - more of an overlap scleroderma family CTD.

But actually most people have heard of Lupus so it’s much easier saying Lupus-like than Overlap CTD or systemic sclerosis - especially a my new rash looks very much like a butterfly rash. Is it okay if I share this excellent radio interview on my social media? X

[RosieA in reply to Hidden]

I felt very saddened when I read your post and am hoping that you get the help you so obviously need quickly. It is indeed a postcode lottery as I have discovered since coming onto this forum. I have often said that upon retirement I would like to go and live by the sea, but to be honest I wouldn't want to move away from the rhuematology department near me now or that pipe dream is ended. It shouldn't be like this, we should all have equal access to quality and timely provision. Please let us know if you feel able when you are successful in accessing care. My deepest and kindest regards to you. x

[Hidden in reply to RosieA]

Aww what a lovely reply. It’s not been a great time for many of us - especially in devolved parts of UK. I think what upset as well as helped me was that I was able to speak to an eminent rheum in south of England about some of my symptoms privately -for a very minimal charge as it was a follow up. They contacted the UK’s lead scleroderma prof on my behalf unprompted at Royal Free and he came back to them with info they then gave in their letter to my nhs rheumy here.

The letter says how glad they are that I’m being monitored closely by local rheumatology and how I need to be alert to potential risk symptoms.

But I’ve no one to ask now what symptoms to be alert for and I’m not going to be phoned by my rheumy this month, let alone closely monitored. So it is indeed a post code lottery of highly patchy care.

As it happens my hospital is attached to a leading university medical training school. But I have my suspicions that all their research funding is going into Covid and long Covid now.

So everything Melanie says here in this interview is very prescient and resonates worryingly with my own experiences locally.

However I’m glad I’m on Mycophenolate and Iloprost infusions and have had my first Covid vac. and will phone my GP practice early Friday when they are back on track to see about getting another depo to tide me over if my symptoms worsen. I’m probably just worrying unnecessarily but, like everyone here, we want to feel there’s someone there watching out for us as we know how easy it is to fall through the net.

No please don’t move to the seaside if you’re getting good care where you are! X

[RosieA in reply to Hidden]

Having someone to contact is undeniably essential. Do you not even have specialist nurses? I can't imagine your despair and frustration.I am in the process of being diagnosed with new symptoms appearing over the course of the year. I am slightly dreading the spring/ summer as I became very photosensitive at the end of last summer and am wondering what impact a full season will have on me. Still, I have in mind a little project for the only part of the garden that is north facing and suspect that I will have to admire the rest of the garden from this little point. Keep us posted and all good luck to you. xx

[Hidden in reply to RosieA]

Thanks. No I’ve never yet been assigned a specialist nurse. I have only seen two local rheumies 5 times in 6 years face to face and been passed about a bit as a “very complex patient”🙄 I asked yesterday if there was a rheumi nurse I could speak to but she said one is off because of ill health and the other can’t get in because of the snow. But I’m okay it’s just a minor rash and extra bad eyes.

Hope you’re north facing patch works out. We should swap - my tiny Scottish garden faces north! I’m very photolight sensitive so have to wear dark glasses all the time. Also an nearly albino so patches of skin cancer on face so have to be covered up always. But otherwise I just adore sunshine - looking to move somewhere warmer and dryer abd south facing one day soon as windy, damp and humid weather are all my enemies.

Despite Raynauds I even love this total freeze as long as there’s no wind and I’m extremely well padded! X

[MelanieSloan]

Oh so sorry to hear you're experiencing that lack of care. I had hoped this wave would be better in terms of them learning to keep departments running but still seems very unequal depending on area.

Yes of course, share away. If you link to the papers even better

doi.org/10.1093/rap/rkab003

doi.org/10.1093/rap/rkaa072

[Hidden in reply to MelanieSloan]

Melanie I suspect a lot of it’s about NHS funding priorities. I have absolutely no idea whether this hunch is correct - but I very much doubt my entire rheumatology department (bar one) volunteered to be redeployed.

I could be wrong but I’m guessing that they would have dreaded what they will have to come back to - ie a huge clinic list of people suffering all sorts of additional physical and emotional damage.

I think it’s because they all have GP training and understand the MABs used for severe Covid better than others. And I think similar applies to other specialisms such as dermatology and neurology not to mention renal specialists. I’m guessing that they and other university teaching hospitals made this decision because they want to be seen to have made an indispensable contribution to finding a cure and Covid research.

I hope at least way perhaps senior level admin and governments will be more appreciative of how important rheumatology actually is as a specialism and start training more medical student grads?

This is my hunch. Bit maybe I’m being naive and they just wanted to prioritise Covid because it’s feels more noble to be on the critical care front line than dealing with outpatient clinics full of patients with our rheumatic diseases all day everyday? I have wondered hard about who makes these kinds of decisions and why - but no real idea. Have you? Xx

[Singing_fairy in reply to Hidden]

This was a great interview and I do worry about what happens when my daughter becomes an adult as her paediatric team is excellent and when admissions to hospital come our GP’s are rapid and A&E are often waiting for her on arrival.

However it really saddened me to read that you feel NHS staff (those of us who have chosen to work in less noticeable fields and put hours and hours of studies in to our training often at our own cost) - suddenly decide in a pandemic to dump our patients and head of to critical care because it feels ‘more noble’!!! Critical care always is seen as noble so why would they go into a less noble cause in the first place?

During the first wave I was redeployed to covid wards (with a shielding daughter) to clear wards as quickly as possible by delivering care a quickly as possible.

This time I fought to stay and continue treating my normal caseload - because I worried about my patients. Dr are slightly different and especially rheumatology specialist - because of the nature of covid and what kills patients rheumatologists are the ones who most likely have the answers. Most junior doctors (anyone who isn’t a consultant is considered junior) have been redeployed to acute wards and this has left consultants running clinics - except of course rheumatologists who are trying to solve this disease.

My daughters care has continued well but that’s because children - thankfully have a tiny risk to covid - but her paeds consultant changed as the original one was taken to the university hospital to be on the covid team - he isn’t back yet.

So I see this argument from both sides and a patient’s relative and a health care professional. It troubles me when poor NHS staff cause harm to patients - I really do but please do not tar us as a group of people who jump on the first band wagon for recognition - because very little ever comes from NHS service and if money and prestige where important to you - health care is the wrong profession.

I hope you get everything sorted soon. It’s a tough time for everyone but maybe having explained the situation and why and how decisions are made it will help slightly.

X

[Hidden in reply to Singing_fairy]

I’m sorry - I really didn’t mean to come over as doubting the motives or integrity of staff who are redeployed at all. I was just asking/ wondering that’s all. Your reply has reassured me that it’s not because we chronically ill patients are of less importance to our doctors.

When shielding for so long, with no face to face interactions with our families, GPs or specialists or work colleagues - it’s all too easy to lose touch with reality you see.

So inevitably we start to speculate about what our redeployed doctors are up to. I do have a daughter in law who is a nurse on the Covid front line. But we tend just to chat about things other than her job or my health. I know from my son that she was relieved to get back to her regular patients and has found losing so many of them to Covid - directly or indirectly, distressing. But she did choose to leave them in the first wave to be an ICU nurse and I just wasn’t sure if my doctors have a choice about redeployment. You suggest this is not the case and that helps give me perspective.

I am struggling with 3rd bout of cystitis in 6 weeks as part of a flare up so maybe didn’t sound quite rational in the way I phrased this question. But it was just a question - not what I think!

I guess it’s like being left behind in a war - there are those who are there on the front line or helping behind the scenes and those like me left at home struggling with relentless, mundane worries and self managing complex conditions - not really knowing what’s going on.

The news and social media are our main contact with the wider world and all we see is Covid and negative impact on cancer patients, as conveyed well by Melanie. The sense of abandonment and being invisible and forgotten is magnified by the redeployment of our medical teams.

The impact of this on our mental health shouldn’t be underestimated either because it makes us feel pretty useless/ redundant/ burdensome.

Q: “What did you do in the Great War granny?”.

“Ah well I just .. er...let me think? I guess I spent a lot of time ill in bed, became paranoid and struggled to stay positive, missed my children, friends and work colleagues horribly. My life revolved around having enough money to pay my bills, food I could eat, enough meds, my monthly blood monitoring, tv and staying safe inside or finding remote nearby places to exercise in order to not get sicker or burden the NHS”.

I think this speculative conversation. would sum it up quite well and Melanie does speak excellently for many of us.

I’m so pleased that your child is getting good care but really understand your concerns about her going into adult services. X

[Hidden in reply to MelanieSloan]

PS you might be interested to know that my husband was in our hospital outpatients today and said the place was deserted. All outpatients clinics, neurology, rheumatology etc seem to be completely closed. It was 11.55am and he walked right through with barely a soul in sight. We have had heavy snow but still it seems eerily significant?

[RosieA]

Congratulations. Succinct, punchy and beautifully put. Let's hope it perks up some ears. x

[KayHimm]

Melanie -

Although the sadness of what you described made me tear up, I want you to know you did a fabulous job. What an advocate you are for all of us.

You highlighted the painful reality that I suspect exist in both our countries: health care is not equal whether we are in a pandemic or not. I hear the suffering of people here on the forum, and the pandemic has exposed huge deficiencies in the American health care delivery system.

Keep doing your good work.

Kay

[MelanieSloan in reply to KayHimm]

Thanks KayHimm, yes I read a very sad article about how a US lady with lupus had ended up with permanently damaged kidneys because she didn't have insurance and couldn't afford her immunosuppressive medication. I was deeply shocked and saddened. However much the NHS is on its knees and the issues we all have here at times, organ damage and death because you can't afford care or medication just seems incomprehensible and so very wrong.

[Willow1414]

Hi Melanie

Thank you for this link , managed to watch this one , just a big thank you 🌟

I was wondering what time was it on the BBC . ?

🦋❤️

[MelanieSloan in reply to Willow1414]

Thanks Willow, the BBC said it was several times and clips were shown on regional channels but I'm not sure when. 630 was the intended time for regional but I missed it! Someone said they saw it on BBC one in the evening.

[CSLO]

Oh very well done Melanie. Articulate, fluent, precise. you presented yourself and the facts brilliantly.

How sad that the interview was cut, it just illustrates the need for full length documentaries about Lupus. There are /have been , many famous folk with Lupus, if the producers feel the need to funk it up a little!

Thank you again, this publicising of Lupus can only aid the battle for increased awareness and better care.

[MelanieSloan in reply to CSLO]

Thanks CSLO, well if it had been two weeks before as he intended he would not have received fluent answers as I was in a neuro-flare and telling my children to put their trousers in the oven rather than the washing machine! And the week before that I was in hospital with meningitis but again that's not what healthy people watching this would know. I received some emails saying 'but you don't look sick'. Exactly our point often...

The BBC now want to do a film on our lives - and challenges - with lupus once Covid is quieter. They are very keen to film me in a neuro-flare which could be extremely embarrassing but again good for awareness raising. I am hoping that other people on here would like to be a part of the film and together we can show people quite how hard things can be and get more understanding and support for everyone.

That's a great idea about the celebrities. I keep seeing Miranda Hart talking very articulately about living with a chronic disease but can't find any reference to a specific one. Does anyone know? She would be perfect.

[CSLO in reply to MelanieSloan]

I've read that Miranda struggles with anxiety and depression but has publicly supported charities for the chronically ill. See the link. astriid.org.uk/s/news/miran...

It shouldn't be the case but so often a 'face' is needed to elicit interest.

I further applaud your continued perseverance to raise these issues, being so unwell yourself. Yep we've all heard that phrase, 'but you look so well'. Heard it from my dentist just this week!

[Hidden]

Thanks Lou. Yup she’s a good ‘un indeed! X

[Benne09]

Brilliant!! Well done x