Please can anyone tell me if they have been able to change their Hospital trust for another one for their Rheumatology appointments? I have been with the same one since 2015, it started fine and then has just got worse and worse. The service now is causing me so much stress I am on the verge of just not going at all and coming off the medication. The frustration is just too much now, I understand we have had a pandemic and that this has caused endless problems for the NHS but my problems with medications and flare-ups started at least 2 years before covid, and I've still not solved any of the problems or seen anyone. So much has gone wrong I could write a book. I hate complaining, but its just all to stressful now.
T. I.A.
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greeksalad
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Sorry I can’t help with changing hospitals but have you asked your doctor if they can refer you elsewhere? If you get referred elsewhere you could be waiting a while to be seen, people here have had horrendous waits for appointments. Have you spoken to PALS to put in a formal complaint? If not I’d do that as a start, you don’t say what’s been going on but PALS are there to help. Good luck.
Thanks for your reply, it would take forever to say what's been going on. I have contacted pals. and they just said they could only apologize and that was it. Just snippets. of some of it.Gp took me off Methotrexate because I was feeling so ill, I had lots of tests they all came back ok the hospital said they would get me in with the consultant, and for 3 years I was still waiting. Each time I phoned up they said I wasn't on the list then I was on the wrong list, then still on the wrong list, then received a phone appt. from a consultant who said I was on the wrong list she needed to see me in the clinic. On top of all that developed lumps in my neck, I was sent to a hospital miles away and told I may have Lymph node cancer. Had some tests, but no one got back to me with results after 3 weeks. I rang up again and said I was going out of my mind with worry to which the reply was "What do you mean you're going out of your mind". I then waited for another 2 weeks to be phoned to say it wasn't cancer That's just a snippet of things. I've had enough of it all.
Go to NHS website ‘Can I choose where to receive treatment’. You have a legal right to change where and when you have treatment in the UK without having to explain why - and to be referred to another consultant wherever you choose. Good luck - sounds like you’ve had the sort of nightmare that only should occur in a nightmare!
Calmer and that people are proactive in assisting you or at least giving timelines etc.
Re RA NRAS are worth a call too, as they listen and give some great advice too when so frustrated and come up with ideas you might not have thought of too.
I truly sympathise. You sound like you're in the same position as me where no amount of complaining will help now because the trust has gone. The key is getting your primary care doctor to understand that your care is inadequate because ultimately they are the ones who have to do the work and admin to get you transferred. Have another hospital in mind, have a case for why it will help you, and go for it. Good luck.
Be very careful walking away from the hospital you are with….You at least have a foot in the door there.I recently changed GP when I moved house & after an initial good impression I now think I have jumped out of the frying pan in to the fire.
Before you jump….telephone rheumy appointments at other hospitals you are thinking of moving to & ask how soon could you get a new patient appointment. As others have said…new patient appointments can be many months…even years away.
Have you tried getting a f2f appointment with your GP…not to go through all your past problems…he knows about those…but to ask his advice as to whether you should try switching to another rheumy team at your present hospital or what other route would he advise?
Unfortunately you are not alone in feeling you have been abandoned……but do try all avenues before you officially leave your present hospital……you are now getting medication which with RA it is essential ….because as you know without medication you could get irreparable damage.
Brill advice I speak to my Gp a lot and he always comes up with ideas and back up plans if flaring too that works with the drugs I am on from RA team to keep me upright.
Sorry I can't help as I have not done this but you have been given a lot of wise words and I agree that you would have to wait even longer for a new referral. As suggested, you could ask for a second opinion but as a sceptic I always think that a second opinion in the same hospital or GP surgery would be pointless as they would just look at what you have already been told and agree with that. I could be completely wrong but I don't trust anyone. Sorry that isn't any help. I hope you get sorted soon.
In fact these days I think a lot of GPs are fed up with their colleagues not pulling their weight & are willing to take a fresh look at a situation…but of course not at every practice …one can just hope to find such a gem!
Once a diagnosis is made you need to move hell and high water to get medical colleagues to disagree. That said, my private appointment last week went well as the consultant did not have access to my NHS notes, but only my diagnosis. Not a route everyone can go down, and so sad.
I had 2 questions I wanted answered for the handsome private fee he was charging....
Could there be an alternative diagnosis?
Is a medicine review appropriate?
I gave him both these questions along with 4 pages of notes.
I good teacher style... he wasn't given the supplementary questions (justify your answer type questions) 👩🎓. My partner as usual made it very obvious he was writing the consultants responses down.
He was good, of course there could be an alternative diagnosis...let's explore that and then decide if a medicine review is necessary.
That's all I needed.
But what extreme measures to actually get someone to think for themselves.
O so sorry you're going through this it's so tough on top of what we already live with. I even tried private because I couldn't walk or climb stairs or do the most basis task but it was worse. Orthopaedic surgeon was fabulous rhumatologist was dreadful. I'm on methotrexate now and touch wood doing good. It's always good to email or ring the rhumatologist's secretary and keep a paper trail of all emails. I'm sure you've tried that and I Find I e developed ..sharp elbows...we have to push ourselves don't we and it was never in my nature to do that. I also write full reports and add photos of flares and send to the secretary to forward to consultant. There should also be a support group for investigating unsatisfactory care etc to help. I hope any tiny bit helps. Now I'm on my meds my GP shares my care and prescribes meds and my blood tests are taken at my gos monthly. I hope you get sorted, be pushy xxxxx
I did this, my GP referred me to a new hospital, I was still under the old hospital and once I'd had my initial appointment with the new one, I rang the old one and asked them to remove me from their care. Good luck
You are entitled to change and this worked well for me. I jumped ship to another consultant/hospital after researching on the internet about who/where I wanted to go to. To avoid a 4 month wait for an initial appointment I paid for a private consultation. BUT this jump hasn’t worked so well for some on here so think carefully first. I jumped hospitals before Covid so I imagine waits for appointments will have doubled. Good luck 🤞🤞
I looked into switching trusts as my rheumatologist is useless. I was diagnosed with AS in Leeds, although I live in Kent. Had been attending Leeds for 18 months. However when they decided I needed biologics, I had to be transferred back to my local trust for funding. I checked with Nass re switching and they said that CCGs now more or less insist your still in their catchment, so I’m stuck, as the other 2 are just as bad.
Hi I was initially diagnosed in lockdown with a private consultant, he wrote to my gp to ask for me to be referred to the NHS, this was January 2021, by March hadn't heard anything so rang NHS Rheumatology who said there was currently a 77 week wait! I was eventually seen in January this year due to a cancellation or it could have been Christmas this year.
My neighbour switched hospitals with no issue but this was before covid, if you can as has been suggested, ask your gp to refer you but stay with your current one until you get seen, good luck x
Not a direct answer, but I have retained my Rheumatologist despite moving house [and health authorities], so presumably it is possible to switch if you want to. Reading others’ comments on here, I would keep your current team whilst joining another list..But maybe first try a different consultant??
yes, without going in to details, ask your GP to refer you to another hospital for a second opinion, depending on where you live, you may/may not have a long wait but it should help you move forward
Hello, I'm sorry that you are having such a rotten time, I can understand what you are going through as I had the same experience. I asked my GP to refer me to another hospital it all went very smoothly and I haven't looked back since.
The only problem was that the new hospital is in a different hospital trust and as I take a biologic drug the new consultant had to apply for funding which did take a little while. I carried on with the original hospital until the new funding was secured.
Oh pet, please don't give up, easier said than done I know but as others have said speak to your GP and push them to help. Keep at them until you do get the help required. I'm beginning to think some people don't see arthritis as a real disease and sufferers are a bunch of moaners who don't know what real pain and suffering is. Comments I've received.🐕🐕
You do not have to tolerate such poor care and I absolutely understand too why the stress is getting to you. In the past I had a difficult situation whereby my consultant was only part time or suffered with I’ll health himself. He basically said the one and only time I ever got to see him in 2 years that he had seen worse than me and to be honest his staff were constantly trying to get me an appointment with him as he needed to put me forward for Rtx treatment (which consequently knocked out my immune system which has never recovered and never will) there again he didn’t follow up as he wasn’t there. In this period of time I had 10 appointments cancelled and I got so sick of it I saw my MP and it never happened again or since with one letter from him. So if pals can’t help try your MP. The good news is I now have a fabulous consultant within the same hospital.
Hi Greeksalad, I was with my local hospital rheumatology department from 2010 and grew frustrated re lack of support so, after some research, I asked GP to refer my to another better hospital. This was in 2017 and the best thing I did. They saw me within 8 weeks and have been amazing and very supportive. This was before the pandemic so waiting lists for appointments may well delay your being seen so that's the main risk. Could your GP ascertain situation re waiting times for first appointment? Alternatively suggestion of talking to PALS and moving after meds have kicked in might be best option. Good luck and hope you get support and effective treatment soon. 🤞😊🙏🏽
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