Gutted 😞: Well my long awaited Rheumatology... - LUPUS UK

LUPUS UK

28,776 members25,182 posts

Gutted 😞

CecilyParsley profile image

Well my long awaited Rheumatology appointment lasted just ten minutes. I told him that my eyes, nose, mouth, skin, hair and vagina were all dry, painfully so. I told him that my nose had bled for 8 days following nasal sores that the ENT specialist believed was Bechets. I told him that my mouth, tongue and genital sores had been present for 8 weeks this year. That I have repeated infections of the chest, nose, cellulitis, ears, throat. I have poor balance and had ripped my tendons. That my asthma had been uncontrolled for 6 months. That I have acid reflux, gut spasms and veer between constipation and diarrheoa. That I itch and scratch until I bleed. That I have now been diagnosed with Hemplegic Migraine. That I am depressed and have not had one day where I felt well. That my hands and feet tingle constantly and burn bright red.

His response…we will put you back on Hydroxychloroquine and Colchicine?? But I still have fluid behind my eyes and the Optician strongly advised that I should not take it and the Colchicine gives me diarrhea???

He said well the Optician is not an ophthalmologist. What did the ophthalmologist say? I haven’t seen one. Why? Because no one has referred me.

So are you refusing to take Hydroxychloroquine. Yes I am. Based on what the Optician said? Yes. Big sigh from him.

Are you also refusing to take Colchicine? It makes me have diarrhea. Well you could try it again every other day. Fine.

Good I will send you a prescription and get some bloods done by your GP. Bye.

Sorry are you not going to even see me?

Do you want to be seen?

Of course. I am suffering really badly.

Right I will request your next appointment is face to face. Bye.

I feel demoralised and uncared for. This is just so wrong on so many levels. I thought he was different. How wrong was I 😞

126 Replies

That is disgraceful! I feel so sorry for you. Why do these people just dismiss us? They are PAID to deal with us properly. They seem to forget this. Why don’t you make a complaint about him? You have so many problems that you have made him aware of. Beggars belief. So sorry for you. X

My husband is angry. I am just disappointed. I had such hopes for this man. He sounded very unlike the person I spoke to last time, he was subdued and silent. I had to ask are you still there because he did not respond in any way to what I was saying until I had told him everything that had been going on for me. I apologised that it must seem overwhelming to relay all these issues but that I needed him to know how rotten and depressed I felt and that I desperately needed his help. I was shocked that his only response was Hydroxy given the issues I had with my eyes and still have and Colchicine given that I told him that my gut was very irritated and that last night I showered at 2am and 4am because of tummy upsets. I have tried the drug on two occasions. The first time they put me on three a day and I literally lived in the loo and was doubled over with the pain. The second time it was one a day and I still had issues. Now he is suggesting one every other day. So that means every other day I cannot go far from the loo. Is that really a viable option? No thought, no care, no real treatment options 😞 Thank you so much for responding xxx

probably would have shown more interest if you had mentioned covid

amc282 profile image
amc282 in reply to suzannah16

Or cancer

Have a good cry then write a stinging letter of complaint to him and those above him GMC even and copy in everyone else who treats you. They are all paid to do their job and if one of them fails the efforts of the others are reduced! It’s a disgrace and I feel for you! Well done for standing your ground! 🤗🤗🤗

I think I will write to him and reiterate everything that I told him. It was a shockingly bad consultation. I could have been talking to an admin. Thank you for your kindness xxx

Omg this is just awful! That is no way to talk to anyone let alone treat someone. Disgraceful! - I would most certainly put in a formal complaint. I’m so sorry you have been so let down :( ..

Thank you, I am so bitterly disappointed. Last time we spoke he apologised for the poor care I had received previously and said we will start from scratch as soon as I can get you into clinic. Xxx

Point that out to him in your letter! The idiot obviously did not read your file before starting the consultation. Getting more annoyed the more I hear!

I’ve posted a picture to cheer you up (at least I think I have) 🤗

Cecily, I am very sorry to read this. Unfortunately humanity and care seems to be a rare quality nowadays (let alone duty of care). I think you must ask to be seen again. Also contact your GP and see if they can support you? Thinking of you.. xx

CecilyParsley profile image
CecilyParsley in reply to LalSD

It was a telephone consultation. I haven’t been seen since early 2020. My GP does not care. She mismanaged my asthma leaving me on 20-40 mg steroids for six months and told me my asthma was anxiety driven? No apology when the ENT doctor who had to cauterise it three times said it was part of my Bechets. Apart from the Respiratory Consultant there is no care. I know they are all under pressure but I am as entitled to a service as anyone else and yet I do not get one. Maybe he was angry because when my Respiratory Consultant rang me she told me her nurse was horrified at the amount of blood I lost with the nosebleeds and she asked when I was seeing the Rheumatologist again. I was honest and told her I did not know as I had not been seen since January 2020. She said I will write to him you need to be seen. She is Head if Service and not someone who takes no for an answer and a week later I get sent a letter about the telephone appointment today. Who knows? Thank you so much for your kindness xxx

in reply to CecilyParsley

Hi CecilyParsley your probably not wrong in your assumption there they don’t like their “colleagues “ in other disciplines pointing out their shortfalls do they.I’m so sorry you’ve had such a rotten consult we put so much hope and faith in these guys but they don’t seem to get it at all do they.

Don't lose heart maybe next time he’ll mind his pees and cues hopefully.take care xx

CecilyParsley profile image
CecilyParsley in reply to

Thank you so much. I honestly do not expect a magic wand or a cheerful disposition but I do expect some care and direction xxx

Hi CP, I’m so sorry to hear that you have been treated in this way, and such a let down too. Some excellent suggestions from the others - do get back to your GP and ask for an urgent in-person appointment with Rheumatology, you mustn’t be left like this, it’s just not right. Big hugs 🤗🤗🤗

Oh I wish it were that simple. I now have a GP that thinks my nosebleeds are caused by anxiety🙄, who badly mismanaged my asthma and left me on steroids for six months and who hasn’t checked or monitored my bloods all year. She could not care less if I am seen. I will write to the Rheumatologist just reiterating what I told him. It might trigger some interest. Thank you for the hugs xxx

This all sounds dreadful but all too familiar. Can you see another GP within the practice? Sometimes that works, believe me.

Thank you but currently you have to speak to the person on call. They are refusing face2face and advising to go to A&E. They got really irritated with me because they refused to let me speak to anyone, not even a nurse so I called 111. The nurse there told me I must be seen the following day and to call her back if they refused. The next day the GP called me and told me to go to A& E and said I was clearly very anxious which was probably causing it. I told her I was not anxious but frustrated that I could not access a few minutes of advice after days of bleeding and chocking on blood in the night. Her response is do you know what we are dealing with? I said actually yes I do which is why I waited 6 days to contact you and never bother you when I am flaring. The cheek of it how dare I be unwell or need help 🙄 xx

I worked in Mental health for years & never came across anyone that had nosebleeds caused by anxiety 🤷‍♀️

Ridiculous isn’t it? 😂

Oh CecilyParlsey 😢😢.. first of all I wasn’t surprised in the least at your post and that’s what makes it all the more shocking 😡.

I am so so sorry you were treated like this it’s really disgusting and makes my blood boil .

How the hell would he like it if his wife , sister or mother was treated in the way he’s treated you .. he hasn’t listened or basically given a flying f***. It makes me so angry and I don’t have a temper .

Your appointment sounded exactly the same as one I had a while ago .. not sure if it even lasted the length of the ad breaks .

I know it’s exhausting and you could do without it but please write it all down ..if anything it will make you feel better .

I wish I had some other advice but I know how expensive private is else I’d suggest another rheumatologist who I’m sure would run some tests .. but why should we have to pay anyway ?!?!?!

I hope someone on here can advise you what to do .. I complained about GP 2 weeks ago to practice manager and no response . Have no energy to chase .

Sending you so much love hun xxxx🌸🌹🌸🌹🌸🌹

Thank you, yes you understand only too well. I know they are busy but honestly it was so brief. I made a bullet point list of all the major issues and told him all at once. I paused after each issue and as there was not any dialogue I ploughed on. Had I not been so impressed with him last time maybe I would not be so upset now. I totally understand the pressures they have all been under but I have been untreated, un monitored for so long an extra five minutes would not have hurt. I felt he negated all my concerns about the meds. Would he like to 💩💩💩 all day ? I think not and all it does is reduce the length of flares, not stop them, not make them any less painful. As for the Hydroxy I was happily on it for 9 years until a numpty doubled it and it affected my eyesight. He even said last time that given the macular odema he would not want me to go on a full dose. Now apparently I can and I am refusing treatment. Little comfort to have fever flares yet lose my sight. I will calm down then put it all in a letter to him. At least that way it will be on file. Xxx

Hi, long time no chat but I honestly have been so saddened by your post. I once did the following with a really positive result. Perhaps it might be worth a try.From experience I would email the consultant. Couch the language very carefully so as not to place anyone in a corner and keep it very factual, rather than a letter of complaint. Emphasise that this is the only life that you have and am entrusting it to care of the hospital etc and am reaching out for clarification and reassurance, given the magnitude of your distress and the short time that you were given.

Then a series of very factual bullet points on areas you are seeking clarification:

Re-emphasise the list of Sjogren symptoms and how debilitating they have been. Are there any alternative treatments to HYD etc...

The impact of HYD on your eyes and ask for an urgent referral to an opthamologist prior to potentially restarting, as you need to be confident that there will be no irreversible damage.

Reiterate the impact of the other drug on your stomach. How is this to be managed if the side effects reappear? What other options might be worth exploring?

Ask for a F2F to resolve outstanding issues.

I would be tempted to state how marginalised and unsupported you are feeling. You might cite the research that shows how some professionals labelling of you with Health anxiety has already had a significant impact on your health and the quality of care you have received and you are reaching out to them for reassurance etc.

Try and keep it to one side of A4 (I always get someone to edit mine). Email it to the consultant's secretary and hopefully....

Do ignore all this if it seems completely inappropriate to you. My thoughts are with you, I think many of us will have experienced a little of what you are going through. xxx

P.S Any hope of a second opinion from another Rheumy?

Tiggywoos profile image
Tiggywoos in reply to RosieA

Fantastic practical advice RosieA.. wish I could take you into appointments with me ! Oh and Dr 👩‍⚕️ Himm of course 🌸😉😊

KayHimm profile image
KayHimm in reply to Tiggywoos

I’ll come with my IPad and Rosie with her two by four card. 😜

Horsewhisper profile image
Horsewhisper in reply to KayHimm

Love this! 👍🥰

Tiggywoos profile image
Tiggywoos in reply to KayHimm

Didn’t someone else express an interest in a “sit in” protest 🪧😉💋

Omg that would be amazing. We could be rent a mob and travel to support one another. Rheumatologists beware lol xxx

Tiggywoos profile image
Tiggywoos in reply to KayHimm

Dr 👩‍⚕️ Himm.. can I put something out there ? Worth lovely CP getting tested for pemphoid (I know I’ve spelt that wrong ) . I just know that it can cause awful mouth ulcers 🤔xx

Horsewhisper profile image
Horsewhisper in reply to RosieA

Just brilliant! I hope you don’t mind Rosie but I’m going to copy this for future reference should I need it 👍🥰

RosieA profile image
RosieA in reply to Horsewhisper

You're very welcome. I think sometimes we just need to politely put our foot down. I know in my heart of hearts that sometimes in my professional life I didn't do as well as I could, often through tiredness or other issues. If I didn't recognise it myself a gentle nudge by someone always did the trick. We are all fallible and as long as we give people wriggle room and maintain grace then most people will want to do their best and will respond. x

CecilyParsley profile image
CecilyParsley in reply to RosieA

I do hope so thank you xxx

CecilyParsley profile image
CecilyParsley in reply to RosieA

Hi Rosie, not a chance in hell of a second opinion sadly. I have complained about one when I was first diagnosed and it has been thrown up in many consultations with his colleagues.In Wales we are no longer able to be referred out of country either and as many here including Wendy have been referred to my area ( and got no real help and support) it is doubtful that I could get help in another authority. Your suggestion is very good and now that I have calmed down I do intend to write to him. I have the bullet point notes I made in preparation for the appointment so I will use them and just elaborate on a few issues.I think any other Rheumatologist and I would have been annoyed but this one I thought was wonderful. He gave me hope that things could get better for me so I waited patiently. He is a human being, and the NHS are under such terrible pressure , that said it simply is not good enough so I will be polite but ask that he reflects on what quality of life I would have on a drug that causes me to live in the loo, get Little sleep and be too scared to go out less I have an accident. Thank you so much for your kindness xxx

So sorry, CecilyParsley. You must feel so let down and not listened to, especially after waiting for so long in pain and miserable. I suppose a good thing is that he is suggesting treatment, even if it is unsuitable for you (!), and not saying you don't need medication. Could you research what drugs are used for your condition and ask about alternatives? Maybe when he has some blood test results and seeing you in person it will be a different story, especially if you can write to him in the meantime. Sending hugs. Xx

Thank you Choccy. I will write to him. I really hate Colchicine as I suffer with gut issues as many of us do and it really makes me live in the loo. I took three a day the first time it was prescribed and thought my stomach was going to explode. The pain was awful. My GP had to prescribe Imodium, Anti emetics, Gaviscon and Diorelite sachets. I was completely dehydrated. The second time I took one a day and was not as bad but I could not go anywhere and sat up all night rushing back and fore the loo. It gives me Little comfort to have to do that every other day. I bet he would not want that either.Thank you for the hugs , very much appreciated xxx

That sounds awful! You shouldn't have to put up with that. There must be something else that's better for you out there somewhere. Xx

Choccy8 profile image
Choccy8 in reply to Choccy8

Hi again CP. I expect you know this already, but I've just had a quick look on the Versus Arthritis site, and they mention many different drugs that are used, including a couple of alternatives for Colchicine that are used for ulcers. Also many of the usual lupus drugs, Myco, Azathioprine,bsteroids, etc. Posting the link here, hope it works versusarthritis.org/about-a...

Oh this is really helpful thank you so much. I have lumps under the skin that I did not know were a symptom, I have been diagnosed with migraine again I was not aware it was a symptom or the visual floaters. At least now I can ask why Colchicine? I suspect the answer is cost but perhaps I am too cynical xxx

Cecily -

I think it is the cost in both senses - money and risk. One problem with these phone sessions is it is harder to have a real dialogue.

The doctor needs to have a fuller picture of how you are doing - see you in person and monitor bloodwork - to know best where to turn. I don’t see how he can move to biologics or steroids without knowing more.

I am not able to see the alternative medications article but it sounds hopeful.

xk

Hi Kay, yes I agree. He has no blood tests results to look at as the only ones I had were from the Respiratory specialist and she was looking at very different criteria. I will definitely look at the alternatives, it gives me some hope xxx

You might want to emphasize in your letter how discouraging it has been to have side effects from the first medications. Ask if he has ideas for a medication that could help with your symptoms. He has to try to keep you off steroids because you need them for your asthma. And you are prone to infection.

He is in a tough position because he is going to have to justify higher risk drugs. You need to work together. This is another problem when patients get a new doctor every six months! If he had been the one prescribing the colchicine, it would be right there.

I agree with PB that it may be worth working things out with this doctor. I have had poor first sessions with doctors and ultimately learned their quirks and appreciated their knowledge. I was ready to leave one recently but rheumatologist said I wouldn’t find anyone more knowledgeable. So I just accept he’s a bully and scream when I leave his office. 😫

Hoping you will move forward. Know it isn’t easy after being shaken up like you were.

Yes I agree Kay but only because I have little alternative in the way of Rheumatologists. My last long term Rheumy actually never examined me in the five years I was under him. He was defensive and inconsistent but I stayed with him because the alternatives were dire and for all his faults he would refer me on to other specialisms. I will be as succinct and focused as I can and give him the flexibility to offer help. I will try the Colchicine every other day but I am not willing to persevere with it if it means that 3 days a week I am toilet hugging. My quality of life is limited enough now so further encroachment on my ability to function is not acceptable to me. Hopefully we can reach some compromise. Fingers crossed 🤞🏻 Xxx

No, don’t take the colchicine if you have side effects. If the every other day dose produces the same awful symptoms, the rheumatologist can document it. That allows him justification to move to another drug.

We are all here for you

xk

Thank you Kay. I have chatted to people on the Bechets site and many have similar issues with the diarrheoa but some have overcome this by building it up very gradually at half a tablet with food each day. It is worth a try to ease these terrible genital sores. I have had them for eight weeks this year so far and all I have to combat them are syringes of local anaesthetic to numb the pain for a short while. Xxx

Cecily, I agree with what everyone has said. No words of wisdom, but when the docotrs don't have answers, some of them can't handle it and, disgracefully, take it out on the patients. Don't give up.

Hope and healing hugs.

Thank you so much. He wasn’t rude just appeared depressed and uninterested. Had I not had such huge expectations of him I would have been annoyed but shrugged it off but he was so lovely last time and so different to others I have seen. He is only human so although he made me feel really gutted I will write to him and hope that the caring doctor I spoke to initially will come through for me xxx

Maybe he is demoralised already. Such a switch in his consultations. Still this does not excuse your lack of care and compassion. I do not visit this site much these days as had a terrible time pysically and mentally. Maybe some time in the future I will post but for now I need to follow the journey I am on. Nothing has changed from a rheumology point of view except I do not have Lupus. Take care my lovely Ceciliy, I really feel for you . xxxx

louise-a profile image
louise-a in reply to louise-a

Sorry "his lack of care and compassion". xx

Hi Lou It really is so lovely to hear from you. I am so saddened by your situation. I wish that I could win Lotto and book all of us that needed it into a Centre of Excellence. I am so very sorry my lovely friend. Thank you for taking the time to respond to me. It means such a lot. I too have hit rock bottom and am having counselling to try and lift my head again. My in box is always open to you. Sharing your feelings helps I promise. I will message you my email and if you ever feel like a chat, a moan , a vent or a giggle I am here for you lovely. You deserve better xxx

Oh CP, I am gutted to read this report 😢. He seemed so helpful the last time you spoke to him. One of the things I find so hard with these conditions of ours is how we always have to be on our guard, as consultants can turn on a sixpence and leave us reeling, even the good ones. I wonder if he was grumpy because your respiratory consultant wrote to him to chase him up? You have been under treated for so long, it's all just incomprehensible.

You've had some great advice here. Writing a letter seems like a great plan as that way it is all on the record. I know it is not easy to do but is there any way for you to find a new GP? You have come to the end of the road with your current one and you really need someone in your corner now. Also I wonder if your optician can make a referral to an opthomologist? I'm not sure how it works in Wales where you are but my optician at Vision Express said she could refer to an opthomologist should I need one. I know all this takes energy which is in short supply. You shouldn't always have to fight so hard for every little bit of help. Sending you big hugs to get over this latest set back and strength to help you come back fighting when you are ready. Xx

Horsewhisper profile image
Horsewhisper in reply to Salzer

Yes absolutely a good idea Salzer for referral from opti to opthal - my chappie at Vision Express got me an urgent referral - it seemed to be a fast track which was really helpful. 👍

CecilyParsley profile image
CecilyParsley in reply to Salzer

Hi Salzer. Thank you for your kindness. Yes you have worded that so perfectly that we have to be on our guard and sadly I wasn’t this time. That will teach me. Why is it always Rheumatologists? I have consultations with Urology, Neurology, Respiratory all absolutely civil and constructive. Sadly at our surgery now ( which is one of the best in my area) they are not seeing patients and you cannot choose who you speak to. I have ended up with the same one who is just useless. Although I am sure the diagnosis of “ hysteria” and my current referral for counselling for depression has coloured her perception of someone she has never met, once I can again choose a GP I can start afresh.. As for the Ophthalmologist, again, here in Wales the system is different. Referrals have to be made via Specsavers and are made to their clinic. You attend their clinic, they do the same scans and they are sent directly to the hospital. On two occasions this has happened with me but the Opthamologist said I did not need to be seen as the fluid on the back of my eye was not severe enough to risk treatment with a needle. On two occasions Specsavers have posed the question is it safe for this lady to go back on Hydroxy. On both occasions this question has been ignored. I cannot see an Opthalmologist in any other way. My GP advised they can no longer refer so I am stuck. It sucks really xxx

Salzer profile image
Salzer in reply to CecilyParsley

Oh Cecily you really are stuck between a rock and a hard place. Until you can be seen in person you are not getting the help you need. Is there any other way to contact the opthomologist to get a simple yes or no answer on the hydroxychloroquine at least? You have been so let down, it is just dreadful. And with all the other things you are coping with too. Feel so much for you. Xx

What meds were you hoping to be offered? Maybe directly ask for those. Also he is correct that you should see an retinal specialist before ruling out HCQ. He can likely initiate the referral. He offered you options that is something and he might be able to explain why those are the only options at this time if you request other specific treatments. Good luck.

CecilyParsley profile image
CecilyParsley in reply to Roarah

I honestly do not know re the drugs because when I spoke to him last year he said he was aware than I had received poor treatment as the Rheumatologists could not agree on a diagnosis. He said he would see me as soon as clinics were open and start from scratch. He said whilst he felt I may well have Fibro, my bloods indicated autoimmune disease as did my symptoms. I therefore expected to be called to a face to face, scans and bloods scheduled before he came to a definitive diagnosis. I think he just wanted to know whether an Ophthalmologist had advised to not take Hydroxy after the macular odema but despite the Opticians at the macular unit asking for a response on two separate occasions they did not answer in their reports. Thank you for you good wishes, much appreciated xx

Roarah profile image
Roarah in reply to CecilyParsley

I hope you will get a face to face in the very near future❤️

Oh, Cecily, I had such hopes for you with this new doctor. I know you are majorly disappointed.

Since you are unable to take the medications the rheumatologist prescribed, would you be willing to ask him whether a referral to a Behçet’s disease makes sense? You suffer so much from the oral ulcers. It looks like there is a new drug called Otezla that could be helpful. I don’t know what the guidelines are in terms of prescribing it in the UK.

I agree with Rosie that you need a plan for better control of Sjogren’s symptoms.

Really hope you find a better way forward.

🥰 Kay

Hi Kay. Yes I really am gutted. He hardly spoke to me. I was really taken aback with that as he had be so affable and constructive previously. The problem is my diagnosis has changed every time I see a consultant. The Rheumatologist who I saw for 5 years had me down as definitely Bechets, probably Lupus, possibly Fibro. The next one was the Fibro and hysteria diagnoses. Then it was MCTD but they did not specify which. Then it was UCTD with Bechets and Lupus ruled out. I have not been seen since. He would not comment on what the ENT Doctor thought. He would not comment on whether Sjogrens was a possibility. He just did not answer me just sighed heavily and kept pressing on about Hydroxy and Colchicine. I told him that the three in one mouth wash he told me about is effective with regards pain and longevity of my mouth ulcers but that the ones on and around the base of my tongue are particularly nasty. Again no comment. I will look up Otezla now thank you so much and ask on the Bechets site. Unfortunately I seldom get a response to my posts there xxx

Hey CecilyParsley,

I am so sorry that you're feeling disappointed following your appointment. There has been some really useful advice that people have given - I do hope that this does help! Sending you lots of healing hugs and hope you are feeling better soon!

Xxx

CecilyParsley profile image
CecilyParsley in reply to Simbob

Thank you so much. Yes this community is just fabulous.I will write to the Rheumy so that he can see in print what he obviously did not hear or want to hear xxx

Oh no 😡😡😡

This is a blatant disregard for you and your health. You explained the problems very clearly - and he very clearly didn't listen OR (even worse) he did listen and dismissed you anyway 😡😡😡

I don't have the words to tell you how very angry this makes me feel.

Perhaps you can make a complaint about him via your GP (or is he useless too?) or directly to the hospital by way of his secretary?

All I can offer are heartfelt hugs (I wish I could do more)

🤗🤗🤗😘

CecilyParsley profile image
CecilyParsley in reply to MEGS53

Thank you so much. I will try writing just reiterating what I said as I do not believe for whatever reason he actively listened to me. If I get no response then I will consider a complaint because I really have received a lack of care xxx

MEGS53 profile image
MEGS53 in reply to CecilyParsley

That sounds like a good approach.

Keep it brief factual and without direct criticism ( for now).

Thinking of you 🤗🤗🤗🤗

CecilyParsley profile image
CecilyParsley in reply to MEGS53

I will let you know IF I get a response Meg xxx

This is a bit left field. But have you ever considered taking a daily antihistamine such as certirizine incase it can help your symptoms. I'm not suggesting you have hayfever, but my consultant out me on certirizine because she was concerned about my nasal and mouth ulcers. She wondered if I had a level of mast cell activation syndrome. I was just thinking that you could try it for a two week period and see if it helps? It's OTC so no prescription??

You might consider getting a second opinion, although they may say the same thing. HCQ and colchicine. It's such a shame you can't take colchicine as it's really helped me.

Do you always take it on a full stomach??

So sorry you are going through this

HT 🌷

Hi HT, I take two antihistamines daily prescribed by a GP. They seem to make no difference to the ulcers. I can cope with the mouth ulcers it is the genital ulceration that absolutely floors me and now that I have had issues with nosebleeds that the ENT doctor thinks are vascular and linked to Bechets, I really needed some advice. Yes I took the Colchizine with food as I do with all my medication. It is just one of those things that made me so full of gas and gave me diarrhea. Thank you for responding to me xxx

Such a shame that you can't take colchicine. I take it for recurring pericarditis. I was told by the hospital pharmacist that people either tolerate it or they don't. It seems bizarre that your consultant wants to try you on it again if you don't tolerate it.

I wish I could be of more help. As you know I have had some fairly awful experiences in hospital and almost didn't go in last time. The thing that changed my care last time was that I wrote an email directly to my consultants secretary saying a "this is how my treatment makes me feel," sort of this. I wrote from the bottom of my heart, very factually pointing out my expectations of my care and the way in which the care had fallen short. My consultant was very keen to sort the situation out pronto.

The difference in your situation is that your consultant seems to be the cause of the problem, whereas my consultant wasn't, it was another team. But I do wonder is a personal email would help, possibly pull at his conscience? I don't know him so it's impossible for me to say.

I just know that going to PALS never seems to achieve anything and other than a second opinion I don't know what to suggest.

Could you go for a private second opinion with all of your blood results etc?

Sorry, trying to be helpful but I have terrible brain fog tonight x

Bless you for trying to help. I honestly do not know why he is persisting with the Colchicine but I will try again. It is even more implausible as my gut problems have got so much worse lately. It started in January with a terrible virus that made me double over with pain, diarrheoa and a temperature of 102.Since then the IBS symptoms, acid reflux, have increased. Adding Colchicine to the mix is going to be interesting .We do not have PALS in Wales and right now because of huge vets bills ( Brodie has arthritis, Dylan has a heart murmur) going the private route is not feasible for us.I will try the letter and hope that he was just having a bad day 🤞🏻 Xxx

Oh gosh, I forgot you are in Wales. That is going to make it even harder. Stay strong, keep posting.

When I've been at my lowest points this forum has always seem me through.

As regards to your bowel problems. It's a wonder that you haven't been considered for an endoscopy/colonoscopy.

Take care xx

They would have to see me for that lol Sorry it made me chuckle thinking of an over the phone colonoscopy a bit like the air stewardesses place the tube here and here and in case of an emergency use the emergency chute 😳 xxx

😂😂😂😂😂at least you've got a good sense of humour!!x

It is essential for us I think 😂😂😂

Hi CP! Just a brief reply regarding PALS, that hopefully might be of help. Each hospital in Wales should have its own PALS contact, otherwise PALS@wales.nhs.uk should be able to assist. Although I am England, I found them a marvellous resource when changing a consultant for my partner last year. As others have said, a dedicated eye hospital with A&E facilities can be a real help for eye concerns. We have always found them to be extremely thorough. Big hugs for what you are going through; I know how hard it is to prepare for battle when you already have so much to cope with. Good luck.

Really I honestly believed we didn’t have them. Thank you so much I will look into it now and if he fails to respond to my letter I will reach out xxx

Hello. I’m so sorry you’ve been treated like this. Not only is it dereliction of duty, it’s down right ignorant. Some of them really are in the wrong job. Is there another consultant in the department you could see instead? If not then as you said get it down in writing to him, if nothing else it might make you feel a bit better getting it off your chest. Take care, sending you hugs and best wishes. X

Oh I wish Froggie. I made a complaint about one 11 years ago. Another said I only had Fibro and “ hysteria” so this new one is it for me. As I said he was just superb last time I spoke to him so maybe he was having a bad day? Let’s see what my letter achieves xxx

Best of luck🤗🤗

Just an idea but have you posted anything like this on the HU Bechets site? They may be able to advice you. I know you do t have a formal diagnostic but I'm sure they must have a lot ok knowledge and some of them might not be able to tolerate colchicine and HCQ? We don't know what we don't know so it might be an idea to ask??

Hi HT I have posted on the Bechets site a few times and never got a good response, sometimes no response at all but I will try again thank you xxx

I know I'm posting late on this thread. Sorry - been struggling.

I think this is where you would benefit going and being seen by Professor Farida Fortune.

behcets.nhs.uk/our-centers/...

I don't know how to get you there if you cannot be referred out of Wales. Are there exceptions as to when you can have a referral outside?

Everything seems to point to Behcets in your case. Prof Fortune ruled it out for me over a telephone consultation last year. She was extremely thorough and tied up what has consistently been described as a minor immune deficiency by my immunologists with my experience of repeated viral infections and shingles. She's old school, methodical and engaged (although I get the impression she doesn't suffer fools gladly).

I know you cannot afford a private referral right now, but could you at least contact the hospital secretary to find out about costs going forward?

Please also check whether there are exceptions to you being referred out if Wales. You have suffered enough!!

Apologies if someone has already suggested this- I'm not fully up to date.

Take care and hang on in there 🌈🌺🍀🍀🍀

Thank you so very much for responding and your advice. I truly appreciate it. I will definitely check this out. I hope that you are on the road to diagnosis and treatment? Xxx

I wish I could do more to help you.I'm getting there hopefully, thank you. The Addenbrooke referral will hopefully be accepted and a second opinion gained.

I feel awful that you cannot have the same right now. There should be no borders where healthcare is concerned.

I support Doctors of the World with my pocket money (😆). They do a lot of good work in the UK too. Shame they can't take us all up as a cause!! 🌺🌺🌺🌺

There never used to be here in Wales I was very fortunate to be referred to St Thomas’s Lupus Unit in 2011 when my new Rheumatologist disputed the diagnosis. Sadly they saw me twice then discharged me. I think for me it is a process. First I need to find myself a new and helpful GP at my practice. Then I need to try the Colchicine. If the Colchicine can be tolerated, which having taken it twice I am sceptical, then I need to monitor how it helps my flares. If it cannot be tolerated then I will need to challenge my Rheumy and depending on his response request that the GP support me with an out of area request. If I asked now the response would be unfavourable I think. Good luck with the Addenbrooks referral. Please let me know how you get on and thank you once again for your kindness xxx

I will keep everyone posted about Addenbrookes 👍 And good luck- it's sounds like you have a roadmap and I hope you get to where you need to be quickly 🍀🍀🌈🌈🌈🌺

Wonderful, yes a solid plan at last . Take care xxx

So sorry Cecily, I so feel for you, I’m dismissed and ignored in the same way and if you’re like me it’s scarey. The system is so shattered, some people get treated good others not, unfortunately we are in the latter. I was promised face to face but still not been seen for urgent referral and told to contact outpatients now and make appointment (start over) because neuro left the trust. It’s a joke but not a funny one.You deserve better than this, just be careful making a complaint as it can be held against you. Maybe wait for face to face first and see their attitude then but it’s disgraceful. So much harder when like me not a go to turn to. You are so much better than that, stay strong and I hope your letter brings you better treatment from them.

Much love and 🤗🤗🤗🤗🤗xx

I know you have been so badly treated to. I know you understand the sheer despair of not being seen or taken seriously. I honestly have Little good to say about Rheumatologists I have seen, even at St Thomas’s but I really thought this one was different just like you did with your Neurologist who then left and made no provision for you. You wonder what is it that they see when they look at our files? I think somewhere on mine in block capitals is time waster, hypochondriac, nuisance. I won’t make a complaint yet but I will write politely just reiterating what I said. At least that way it is on record. I am truly gutted that you have to go all through the Outpatient referral again. In Gods name why? It makes no sense whatsoever. It is wasting their time and yours. So much easier for them to read what has already been ruled in or out and start from there. You must be so fed up? Huge Cwtches to you, it is just not right 😞 xxx

Good idea cecily , write so it’s on record 👍It’s madness, people ask me or family , what was my diagnosis and cannot believe I’ve still not been seen, given face hands the things that are seen they can’t believe I’ve had no help, add to that what can’t be seen 🤷‍♀️ I’m past fed up, I will just plod on whilst I can.

I don’t know what’s on my records, probably the fact I complained.

I had all the best advice on this forum from you all but no amount of photos or diaries has helped ( I have many) as it’s a docs interest which I have no control over , and since pandemic started I’ve got no chance of answers. None of it makes sense, I worry if my kids got ill, what help would they get 🤷‍♀️, it’s scarey.

It’s awful when you think you’ve found a doc who sounds different and interested to be hit with that blow. I knew it was too good to be true that neuro sounded interested and he listened and then he left, he said he didn’t want me at hospital for face to face in height of pandemic now I wonder was that for my protection or a cop out. I can’t believe no one has picked up where he left off, that team I see way back who urgently referred have done nothing that ent not got back yet and that I just seem invisible. 🙈

I don’t even trust what’s been ruled in or out to be honest when based on bloods and nerve tests which may show nothing obvious yet I suffer the things I do. Being seen, I’m told and damn obvious things not right, is that not why tests done yet nothing shows so oh well 😡 .

Keep on cecily you deserve respect and help and care, it breaks my heart you’re treated this way but as much as you shouldn’t have to you will recover his ignorance and arrogance and 🙏🙏 get the care and respect you so deserve.

I don’t think any doc having an off day with regards a patient is acceptable , you’ve been through so much of late I send much love , best wishes and strength 🤗x

I feel for you lovely. I understand how demoralising it is to be just left. You start to believe that you are not worthy of care. No one can fight forever. It is exhausting mentally and physically. After the “ hysteria” diagnosis I said to Neil am I making myself sick? I am bringing this on myself? Am I lazy. My self respect was zero and then such a glimmer of hope with this new one. I felt validated. I am better today. He can either help me or get out of the way. I will give him the benefit of the doubt once. Do I sound strong yet? Lol I am trying it with not a lot of conviction. I truly hope that the next Consultant you see is a keeper. We cannot expect magic wands or miracles but we can demand courtesy and respect and a desire to help. Much love to you xxx

Keep your hope up cecily , yes you sound 💪 strong 🙏😂 it’s hard isn’t it to have to be respectful when not receiving it. I am keeping everything crossed that your next experience brings all the good you deserve, at least respect ✊ I think an apology would be nice too but I wouldn’t hold your breath for that one .🤗🤗xx

No I think that would be too much to ask for lol xxx

So sorry to hear of your experience. As others have said l must admit I tend to go now with very specific questions and if possible a " this is what I want to happen". You might find it helpful to speak to a really good pharmacist they often know more about drug options than the doctors. We all have off days and let's hope he was having one and will be much more helpful next time you see him. You may already be doing this but I have gone on an anti inflammatory diet and l am amazed by the results. I was very sceptical but it has made a huge difference.

One other thought are you taking vitamin D as itching is a common symptom of vitamin D insufficiency.

Thank you yes I take Fultium D two a day since St Thomas’s said I had hardly a trace of Vitamin D in 2011. I have a food Bible so I will have a look at an anti inflammatory diet . I am pleased that you have found something that helps you xxx

I’m so sorry Cecily , your post has saddened me as you have been going through hell this past year - all I can offer is a virtual hug 🤗 and you are in my thoughts often ❤️

Thank you so much. You are so kind. Good luck with your pre op lovely. I hope all goes well for you. Sending huge Cwtches and lots of love your way xxx

Thats really awful treatment, especially by someone who calls himself a professional & is being paid thousands. Its so unfair people's lives are in the hands of someone so uncaring.

It was very cold and unfeeling. I felt uncomfortable and so different to my first telephone consultation which lasted 40 minutes. I will write and hope to get a better response thank you xx

Get a second opinion or come to pals nhs.uk/nhs-services/hospita...

I had to wait over a year to be seen by a rheumatologist

CecilyParsley profile image
CecilyParsley in reply to Mystik

Thanks This is for England only and I am in Wales but I just was advised we have them here to so I will look on my hospital site xx

Hi CecilyParsley. Wow. I thought i had medical crap. But my God you’re going through even more. I have all the dry things going on with arthritis & serious eye conditions. So i have a rough idea of how awful you’re feeling.

I think you should complain too. Disgraceful manner. I had a very rude a&e dr once. Id’ been waiting the usual 5/6 hrs to be seen. I had a staphaloccocus throat infection. Was awful. Like swallowing glass. This dr kept flicking his pen. Very distracting. Then implied i was a drama queen. He said he’s had infections like these. But he just pushes through it. He hadn’t read my notes. That i’m immuno supressant. Made me feel weak & pathetic. I was too ill to say anything. Otherwise i would have laid into him infront of the full waiting room. No bedside manner at all. A few months later. I read he was punched by a homeless guy for taking his can of beer away. (Cheered me up!)

But i do agree. You should complain. It’s bad enough when you’re not feeling well. You need some empathy & understanding. The fact he SIGHED???? You’re the patient. They should listen to you. This dr needs to be reminded, needs to be told he needs to ‘find’ his bedside manner. Especially on the phone. It’s more frustrating when you can’t physically see their reaction. Good luck with everything. Hope you can get a nice sympathetic dr who understands everything you have to put up with. X

CecilyParsley profile image
CecilyParsley in reply to Vixen2

Hi Vixen, I do wonder why more of these arrogant sods are not assaulted. Not that I would condone it but you can understand why. think when you are sick you just do not have the energy to tell them off. I used to be assertive now I present as pathetic and I know it. It almost is a green light for them to be dismissive.I will write to him first. He has never seen me so it might just get a better response. If not I think I have been patient enough for long enough and I will have to complain. I am so pleased that you got your definitive diagnosis even though you should not have had to go the private route xxx

Awful. I have recently been diagnosed Sjogrens and Lupus and that was all due to Bupa and private paying. Without it I would still be undiagnosed and struggling I'm sure. GPs often have no idea what to do and make you feel a nuisance like your making symptoms up. I don't know where you live in the country but my Rheumatologist takes referrals from many areas of the UK and people travel to her at Swindon DGH. Dr. Elizabeth Price who is a Sjogrens expert. There are specialist Lupus clinics dotted all round the country. Might be worth finding out as I think you can choose who you are referred to, it always worked that way when private paying. Don't let the GP always decide. Do your research on who you want to be referred to, what's their special interest then get your GP to write a referral letter to them for you? A private appointment cost me £200.00 for an hour with Dr. Price and it was the best money I've spent. Private healthcare no longer covers me with a chronic condition unfortunately but if you need to talk to a consultant for longer £150.00 - £200 for half hour to an hour is worth more than gold. You can go back to NHS anytime but unfortunately your consultation time seems to be limited to the magic 10 mins or so which is not nearly enough.

CecilyParsley profile image
CecilyParsley in reply to dg70

Hi dg here in Wales we cannot be referred out of area . I had a referral to St Thomas’s Lupus Unit in 2011 and they confirmed SLE but unfortunately local Rheumys have now “ undiagnosed me” the last one said the St Thomas’s Consultants bogged themselves up but their advice was “ crap”. I asked about a Sjogrens lip biopsy and was told let’s concentrate on what you do have rather than what you might have 🙄Right at this moment the last few Rheumys have diagnosed Lupus possible, Bechets, probable, Fibro definitely. Then Fibro and Hysteria. Then MCTD. Then UCTD. This one said we would have to go back to square one and re test everything. He gave me hope then came yesterday’s call. I will write to him and see how he responds. Thank you for the advice, much appreciated xx

dg70 profile image
dg70 in reply to CecilyParsley

Sounds like you've been going round in circles for a while. I got a neuropsych evaluation, told to pace myself the exhaustion will get better (12 years and counting now) but not even a mention that I may have an autoimmune disease!! Took a big lump on my eyeball and an experienced Ophthalmologist to put me on the right path. Even privately you can't be referred out of Wales even through an online GP? I've used Babylon online GP, got me on the path mentioned above. Not sure if its operating in Wales. Not easy for you and gutting as you're not too far from Swindon. Bath has a specialist Rheumatology department too. My Rheumatologist used my symptoms not tests as they can famously be negative. I am ra/lo negative but she said I have so many Sjogrens symptoms she was certain even without positive tests. Didn't even bother with a lip biopsy. Did get a borderline positive Lupus dsdna test though. I hope you find someone to listen its a minefield. Have you tried messaging Lupus.org or BSSA to see if they can help with a specialist in Wales? Again if you can raise the money and pay you can go where ever you like. See whomever you like. The private Secretaries of consultants can give you a list of fees prior to visit and your GP shouldn't refuse as it doesn't cost them. If they do, try the online GP route for a referral or ring a hospital direct for private referral info i.e. the London Bridge Lupus Centre. Sorry going on used to work in administration in a hospital and you need a definitive diagnosis by the sounds of it.

CecilyParsley profile image
CecilyParsley in reply to dg70

Oh yes I have been on a real roundabout. I remember the diagnosis of Lupus in 2009. It felt like a life sentence. I had only just began to accept it when a new Rheumatologist said no not Lupus but Bechets. From there things got worse as a CT scan showed swollen lymph nodes around my heart and lungs. Before I knew it there were Haematologists and Oncologists saying I had low grade lymphoma. I was on my own and said well at least it is only low grade. Their faces worried me. I got home and googled it. Omg I saw my GP and said how long have I got? She said roughly four years, I was 48. I kept mulling over the symptoms had only started when I was taken off the Hydroxychloroquine so I asked my GP to refer me to St Thomas’s. I got an appointment quickly. They said definitely SLE and put me back on Hydroxychloroquine. I had a repeat CT scan in two months and my lymph nodes had gone back down. I was discharged from Haematology and Oncology. For the next five years my Rheumatologist was pleasant but never once examined me. I complained during one appointment that I had awful rib pain and asked would he examine me. He refused and said he knew it was just Fibro. A day later I attended a pre op appointment for knee replacement. They sent me straight to my GP as I had pleurisy in both lungs. When he left I saw the arrogant hysteria Rheumy. I saw two others one said Fibro and MCTD and the other said no Fibro and UCTD. I really do not know where to go for a second opinion to be honest. Back to St Thomas’s or a Bechets hospital. I am just confused now. I will write to him and explain my feelings and go from there. Thank you so much for your advice and kindness xxx

I am so sorry you had to go through that. Perhaps worth speaking to PALS? Sending you lots of hugs..hang in there

We don’t have PALS in Wales sadly but thank you so much for your kindness xx

So sorry to hear about your poor appointment.

I think using the limited energy you have in the most constructive way might be the way to go.

As others have said, writing to your consultant just stating your symptoms and what you would like done to improve them or asking his advice on what he thinks needs to be done might be a good idea. Complaining takes an incredible amount of time and as you live in Wales like me the procedures are different and there are other sensitivities which can make it more difficult. I recognise that complaining might help others but you have been so ill you need to get the right treatment for yourself first.

You are absolutely right, there is a problem in Wales getting an opthalmologist appointment. And your consultant is correct - you badly need one. Despite referral I have not managed it even with pushing from my GP. Our local hospital finally admitted they had many referral letters re hydroxychloroquine use tucked away in a file and were unable to deal with them. Maybe you could push your consultant to sort out an opthalmology referral. If you could take hydroxy safely it would help you.

Alternatively some of us take another anti malarial like hydroxy called Mepacrine. It is more expensive and not a standard listed drug. I pay for my own Mepacrine but others in Wales do have more relaxed GPs who will prescribe it on a consultant's advice. I take Mepacrine as well as hydroxy to try to avoid immune suppressants but some on the forum take it instead of hydroxy. As far as I know Mepacrine does not have the eye risks although there can be other side effects which so far I have not felt. Perhaps you could ask your consultant about this option?

There are very few rheumatologists in Wales and we do not have the right to a second opinion as you know. As you had one good appointment with this rheumatologist before the bad one maybe it is worth trying to work with him for a while longer.

If this does not work, you might have to treat yourself as well as your animals and pay for a private appointment if at all possible! Sadly, so many of us in Wales have been forced down this route.

Again, I am so sorry about all your suffering and send virtual hugs and good wishes.

Bw

Pb

Hi PB thank you for your thoughtful and kind reply. Yesterday I felt utterly deflated but today I realise that I am no worse off than I was the day before yesterday and while that is not brilliant, it is not catastrophic. I had one appointment with an Opthamologist over three years ago, when my then Rheumy referred me. It was an amazing appointment. The Opthamologist was unaware that I had been on Hydroxychloroquine for eight years by then and ran a whole series of tests, colour blindness, sight, tear ducts and scans. He told me that I should be very careful on Hydroxychloroquine as I could lose functional sight. He put me on Hydromol for my dry eyes. Sadly when the macular odema was found by Specsavers and I was sent to the Macula Unit aka Specsavers Newport the chief Ophthalmologist decided that the fluid was not sufficient enough to be seen. The second time the same thing and of course despite Specsavers asking for clarification on the Hydroxy issue he just ignored it twice. That led to the Rheumy who had doubled the Hydroxy causing the issue in the first place telling me that there was nothing wrong with my eyes and my only diagnoses were Fibro and Hysteria. Since that time I have been patronised by both my GP and Rheumatology, which has been frustrating and demoralising and has impacted my mental health significantly. I really appreciate the information , I had not heard of an alternative so I will definitely push for that. Thank God for this forum. You are right in that there is a small pool of mediocre Rheumy’s in Wales. Two of them I would never see again and the others are an unknown. This man seemed so different. Maybe he has been worn down by Covid, by the backlog of patients desperate for help, by personal circumstances. Maybe he was having a bad day. I will write politely but inform him of the impact on my life and mental health. Who knows he might come through for me 🤞🏻🙏🏻

Thank you again xxx

Hi ....Just couldnt believe how a so called professional person could behave in such a rude and crass way towards you , there is always a "bad apple" in the pile , but that takes the biscuit.Its a pity they all cant be named and shamed , but history has proved that they "stick" together.

Sometimes I think they just pay lip service , tick their boxes and move on to the next patient , without offering or delivering any help whatsoever.

I wish you well with your letter to the Consultant , When Covid struck I was unsure which jab was best suited for Lupus & Fibromyalgia patients so I wrote to my Consultant , and good enough she replied , its such a pity you cant change your GP, its really difficult getting a "face to face" appt , you have to get past the receptionist first and "no I have not the facility to e/consult " I tell them and I would like continuity with my Doctor , saves reinventing the wheel all the time , works sometimes.

I have to be honest my Doctor is brilliant , so I am lucky , she goes that xtra mile for her patients.

Having to fight your way round the NHS for treatment , which is a given right , does not help your health issues..

Write your letter and I hope you get a positive reply

Take care CP

Thank you so much. I have tried to ask, beg even for continuity but there is a rota of two GP’s doing the day’s appointments and neither have an ounce of interest. There are other very good doctors at the practice so hopefully when things return to some form of normality I can choose again. Xx

I feel gutted for you Cecily as I know how important this appointment was for you! & can understand hubby's anger at you being treated that way.

Your decision to write politely but inform him of the impact all this is having on your life and mental health sounds good advice & one that you would probably have given many of us on here??

Im not excusing his behaviour...no way am I..

but he may have been overwhelmed by all your symptoms! having a short factual letter may help him & you to come together to reach some sort of treatment plan?

You don't need the added stress of a complaint right now...that can always be saved for later if need be!

Sending 🤗🤗

&🤞for you

XX

Thank you lovely. I agree completely. I have already let one arrogant doctor send me into a spiral of despair and I am not about to let it happen again. If this is truly all he can offer me then I have no need for him but I will give him the benefit of the doubt just this once. Xxx

Hi Cecily. Hope it makes you feel not so quite alone to know another person feelsPhysically and emotionally awful today. :):)

Not fun or funny but it does help me some to know I’m not alone; albeit y’all are across the pond! You said you feel “gutted.” It

Almost makes me cry because it is the

Absolute perfect word for your experience

And illness. Almost 10 years ago when I

Was still managing a life and balancing the search for answers of my unwell ness, I

Had an appointment with an ENT because of my mouth ulcers and my thyroid. Within

Two minutes he ravaged me: I was hormonal, a very depressed “lady” and under medicated. I was on a tiny dose of

Effexor that years and years before had been to control panic attacks and depression. It had been reduced as I truly

Recovered with help from a good therapist

And the meds. The residual dose was the

Unfortunate side effect of Effexor: it’s almost impossible for most people to get

Off or get off completely. I have no complaints on that score in case this scares anyone. That medicine literally saved my life. So to my point: He barely examined me

And truly I mean did not touch my neck for my thyroid and barely looked in my mouth.

This Dr was highly recommended,BTW.

As he told me how depressed I was, I began

To cry. This “gutted” me, as my reaction

To his sudden assessment of me caused me to appear exactly as he saw me: pitiful. I

Made an appointment immediately with

A counselor that I had seen in the last year

For advice about a family problem. She

Got the official medical book out on the criteria for depression and I had two out

Of maybe 12 or more. She assured me that I

Had seen a real arrogant shit. Unlike you

I had no intention of writing him anything.

( your system is different). Despite the

Unexpected retribution I got, that memory

Is gutting; but it did push me on to better

Medical decisions and professionals. My

Retribution: My husband and I attended

A friend's 75 th birthday and it was crowded with a houseful. I didn’t feel great

But I knew I looked awesome lol. Suddenly

There he is as I turn around! With his wife and some acquaintances. I raised my glass

And said, “Cheers!” Then completely

Ignoring his title of DR. , I used his first

Name. “Wow, David. Your tie. Not a good color on you.”

Cecily. This whole process no matter where we live is demoralizing. As people, as women (sorry guys), from trying to get a diagnosis to living with chronic health

Problems, to the PROCESS of learning

To cope with it!!!(thank you Dr. Gutting

And Dr. Depression!). Ugh. We all need kindness. I know that’s why I’m here. Hugs

To you and everyone on this thread. Titters

Omg Titters what an amazing comeback.Smug 💩 must have chocked on his canapé eh? Oh how wonderful that you got to serve him that line. I am sat here applauding you. I suspect if I came across the disgrace of a Rheumy that told me I only had Fibro and hysteria I would resort to something more physical. He destroyed me with his words and smirked while he did it. I was too demoralised to make a complaint and ever since I have been on a nose dive. As they say when you hit rock bottom there is only one way and that is up. I hit it hard a few weeks ago and thank God my counsellor helped me back up. I had lost myself completely, I had become my illness and every piece of joy had been sucked out of me. This week she said I can see you now so there is hope for me too. Yesterday I was gutted but today I am carrying on regardless.I am so very sorry that today is an awful day for you lovely. I hope tomorrow is better. You are brave and fearless, remember that idiots tie and be proud. I send you huge Cwtches ( Welsh hugs) and much love across the pond xxx

I love Cwtches!!

You are very welcome, me too xxx

I'm so cross for you CP! Might I suggest you write your letter of complaint, then put it in a drawer overnight. Reread in the morning taking out all the emotion and keeping it very factual. Then give it to a good friend to read and give feedback and then send. When dealing with disinterested doctors strategic and well written complaint letters are a must and that rarely happens when the old emotions are understandably hurting. Sending you a huge hug xxx

Ha ha I agree wholeheartedly. Had I written yesterday every other word would have been bleeps😤🤯🤬‼️❌👿 but today I am better. I will try a letter first and if after that I get no joy I will make a complaint. Thank you so much for the advice xxx

Dear CecilyParsley

I often wonder why when we are at are lowest either mentally or physically , why we have to be made to feel less valued or treated, by someone who should know better . I hope you are able to keep strong and remember these illnesses really do test are strength and will .

You have a lot of people with you on your journey .

I wish you find treatment and answers soon ..

keep baking sour dough , and bash out the dough for all the wrong thoughtless and uncaring people you have had to come across ..

🦋❤️

Bless you Willow. I have mastered the sourdough, the key thing is using a Dutch Oven. I have found if I make two I can leave one in the fridge to bake when the other is nearly finished. I have also mastered the custard based ice creams. My next skills were going to be Arranchini and Fresh pasta but these were on hold until my leg recovered. Hopefully I can start that journey next week. I am far better today than yesterday. We are having to take our gorgeous cocker spaniel Dylan to the veterinary cardiologist as the vet found a heart murmur so I am trying to keep calm and hope that my boy can be medicated. He is such a Littke trooper, blind with both inner ears removed yet he is the happiest, funny little ball of happiness that we love dearly. Once he is sorted I will write to the Rheumatologist and hope for a favourable, constructive response. Thank you for your lovely message it means a lot xxx

Sorry been middle of house move and just keep posting wrong things wrong places just like all the boxes and furniture. Never moving house again and I mean it.

Anyway I didn’t have a chance to read this post and still haven’t read all the replies but I know you’ll forgive me under circs.

Hells bells I really am so sorry that this man was so entirely disappointing and admin-like and lacking in humanity . I actually have had similar experiences with consultants both face to face and by phone and VC even pre Covid. I never found out why apart from once when a GP was just evil to me and I later found out his wife had run off with another man the previous day.

What I guess this should have taught me is that when a doctor totally changes their approach to us and even their personality seems completely different - it’s probably because of something going on in their lives not in yours. We say “I know there’s a pandemic but..” but the thing is that some people seem to just lose their way after trauma and this includes doctors. So if you possibly can I would assume that this total shift is due to something going on in his life rather than anything to do with you as a patient.

This doesn’t excuse his behaviour of course or lack of understanding or professionalism about stuff like Hydroxy issues with eyes and being toilet bound. I’m toilet bound most days and sometimes I feel like it might be good if these doctors has to deal with the side effects of the drugs they expect us to take before they get grumpy about us failing them. In my case I have to live this way due to gastroparesis as it’s either one end or t’other!

I’m blessed with an amazing rheumi and I wish like anything I could clone her for you and others. But she and my dermatologist are the first great consultants I’ve had in over ten years since all this rheumatology journey began.

The thing is that, even when a doctor turns things round attitude-wise for the better, as has happened to me mostly this year (apart from a truly lousy gastro and my previously trusted GP) I might forgive them but I will never ever forget or trust them again. Same with friends who explode unacceptably and then apologise. I can still be kind and accept their apology but I never forget what they did to me!

So I’d try a letter - short as possible ie well spaced one A4 page.

I’d sock it to them from the heart and straight between the eyes and send it electronically so you have proof of receipt. Tell them how disappointed you were by their apparent personality change and appeal to the person you thought they were first time you spoke.

Acknowledge the impact this pandemic has had on many doctors - causing them to lose sight of why they went into medicine and onto rheumatology in first place - likely causing compassion fatigue.

But also point out the huge impact your declining health and lack of diagnostic clarity and treatment is having on your physical health and your state of mind.

And if you can find away of implying that they are paid extremely well so if they are no longer committed to helping patients who desperately need them then please do the right thing and quit. Otherwise they just have to pull their finger out and soldier on like us - only on extremely good salaries paid for by our taxes.

You never know they may even get back to you an apologise and revert to the person you first spoke to. In which case they will do for now but not long term!

Hugs 🤞🏻🤞🏻🤞🏻🤞🏻🤗xx

CecilyParsley profile image
CecilyParsley in reply to 282523

Hi there, firstly thank you so much for taking the time to respond to me when you have so much going on in your own life. House moves are exhausting and stressful when you are well so I really appreciate your kindness. I do intend to write to him, just reiterating the sheer run of flares, infections and new issues since we last spoke 18 months ago. I agree I will add something about the enormous pressure Doctors and nurses are under because that is the truth. I accept that he could have been having a very bad time, he actually sounded so subdued and depressed I had to ask if he was still there. I had such high hopes of him to go from 40 minutes phone call to just five is drastic and he certainly did not address any of the issues I told him about so a written, tangible reminder cannot hurt. I truly hope that you are settled in and comfortable in your new home soon and thank you again xxx

282523 profile image
282523 in reply to CecilyParsley

I met my new neighbours yesterday via our dogs. Hope yours is feeling someday better by the way - must be a worry I know. Mine is 14 next month!

Anyway the woman and I introduced ourselves and she said that her husband was a consultant psychiatrist for decades but has just this month retired. She said he loved his job and if it weren’t for the pandemic he’d have carried on a few more years. But having to wear scrubs and full PPE with psychiatric patients and their understandable but alarming responses to this plus the almost doubling of his existing workload was just to much and he became unwell himself.

This gave me a little insight into why some doctors - mainly GPs in my case - have been abrasive or cold or just bad - despite one being overly familiar. I haven’t seen a GP face to face for 19 months now. Can’t even book to speak to a GP of my choice. I’m not sure what that would take - a lump/ growth perhaps a chest infection?

I do think it’s been like being in front line in a war for some more than others and some have just changed or acquired compassion fatigue. Or perhaps just lost someone or they too are sick? I feel relatively lucky that no one I’ve seen in hospital has behaved this way - but it has pre Covid once or twice and it was horrible.

I wrote to Care Opinion in March after speaking to a GP whose unkindness shocked me to the core. The thing about Care Opinion is that they will only publish if your comment or complaint is reasonably expressed and not too personalised.

But someone from the department or a hospital PALS person or whoever dealing with a complaint lies with has to respond by writing back to your comment and giving you options to contact them directly. It can be used to praise as well as to complain and I’ve done both.

So if you’d find that easier then it might be worth doing it this way they get your feedback anon if he doesn’t reply to your letter about his total disinterest. I mean lots of people have drug intolerances and these aren’t for messing with so he needed to come up with alternatives. If there were none you hadn’t already tried them that’s one thing but someone should still be seeing you face to face by now and checking your bloodwork, weight and BP and pee regularly so I don’t know why it’s all still being done distantly for you.

I’ve seen my rheumy face to face twice in a month although all I wanted was a steroid injection in the bum. I wanted to update and ask her about possible malignancy due to my Sjögren’s and also tell her about a problem of differing opinions between consultants and ask about ongoing unintended weight loss.

She rose to the challenge because she’s a lovely person who hasn’t lost her way as a doctor and also because I always go in with or send my A4 sheet with symptoms, concerns and questions. My husband says this means I’m a helpful patient as she’s got it all down in black and white but I think it actually means that she’s a very receptive doctor because I’ve been doing this for a long time and it doesn’t always work out well with others.

For me this sets the benchmark on how a good rheumatology appointment should be. That’s what you’ve still got to find and my heart goes out to you and Stiff for your ongoing struggles. Xx

Great to have dog lovers as neighbours. My Dylan was diagnosed with a leaky mitral valve yesterday so will be on medication for life. We can cope with that. I have seen a GP twice this year regarding my asthma. Other than that they have refused to see me which is ludicrous, at times they have refused to let me speak to the asthma nurse for advice but since I have seen the Respiratory Consultant I have the hospital respiratory nurses numbers so now bypass the surgery. Sorry I am too fatigued today to respond fully but thank you so much for your insight and advice. It is very much appreciated xxx

You may also like...