Hello all, I have been lurking on here for a while and it’s been incredibly helpful already. I feel I need a rant or maybe someone to tell me what else I can do. My mum was diagnosed with RA about 3 years ago and I have tried to support her as much as possible through this process. It took a year to get a diagnosis, then over 3 years she has had tablets, injections and now biologics. The only thing that seems to have helped is steroid injections and oral steroids.
I work for the nhs and can feel sympathy for the hospital staff at the moment but I can’t help but feel we are being ignored. They don’t answer the phones or get back to messages and basically tell us there is nothing they can do, we have to wait to see if the medication kicks in. So it’s been 10 months on this medication and still no change. My mum has been in constant pain for months, she has allergic reactions to the injections at the injection site, she is often bedridden and now she is unable to raise her arms and I’m quite concerned about nerve damage. The gp says to go to the hospital consultants but her next appointment is in June (first one since diagnosis 3 years ago). Is this the standard of care or should I be considering a complaint of some sort!? My mum is worried about covid so is not keen on going to A&E which is what gp suggested.
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lakeside123
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I’m so sorry your mum is suffering. First lockdown many of us felt ignored and we did not want to be a nuisance.... well over that now.
I find emailing and sending photos or phoning the consultant secretary or you can take it further and try Pals. The government keeps telling us it’s still open. I often remind doctors if they were suffering like this would they put up with it ? I have found being proactive and making some noise ( politely) is the only way . Goes against my nature but I’m getting good at it now. I’m no longer forgotten .
Hi lakeside. I'm so sorry to hear your mum is going through this. Three years after diagnosis and still no better - that's nothing short of disgraceful. I agree with J1707, try to contact the consultant's secretary or PALS preferably with photos and maybe a report on what's been going on. Something needs to be done - she's waited long enough. Good luck and please let us know how it goes. xx
I can't argue with the answers that have been given here. Doctors surgeries are scared to come and see patients and ours doesn't like doing shared care, let alone come out to see a vulnerable patient. Thats my rant over.xxx
Unfortunately as your poor Mother is finding....RA is not a disease that is easily diagnosed & once diagnosed & the first drugs are prescribed it is not just wait a few weeks & it all gets better.Of course that does happen for some lucky people, but for most of us who are now “comfortable” for want of a better word...it is a long haul with quite a few hiccups.
I don’t want to alarm you but 20+ years after diagnosis.....I was in my 50’s,I still get new symptoms....& I don’t think that is unusual....but mostly I am now doing OK.
If possible get mum out of bed every day......sit in a chair....gently move her joints.... that may sound cruel...but I do know from personal experience lying in bed clutching a painful joint does not make it get better....in fact ask for a physio referral ....that could help tremendously.We have to be proactive....as you are finding treatment is hard to access right now.
If you look back over posts on this site I think you will find there will be regular posts like yours.....& tbh it is often almost as distressing for the relatives as it is for the person with RA.
Over the last year rheumatology departments have been even more overstretched than usual, and many people have not had their regular assessments & have missed their rheumy nurse check ups. ......there just aren’t enough of them to provide the service they would like to give at present.
You ask if you are being ignored....I honestly don’t think so.....for example my hospital rheumy department has lost 2 (of 6) Rheumatology nurses who have been transferred to work on other wards. But of course the workload of the rheumy department continues to grow.
Have you tried writing to your mother’s consultant explaining your concerns?
Or have you phoned the rheumy appointment line & asked if they have a cancellation appointments list ...where by you get an appointment at very short notice?
You mention all the setbacks with the drugs your Mum has been prescribed...& I do agree it is very distressing for her....but her Rheumatologist will have looked at her situation, compared the effect her present drug is having & using her/his professional experience decided whether to keep her on that drug....or if the time has come to make a change.Most on here have had to try many drugs before they find something to really help. I do know that is not what you want to hear....but that really is how it is.
Sometimes there are situations requiring a complaint, but I honestly don’t think now is the time for you to start that. You want to help your mum, not start a bureaucratic procedure. Why don’t you either go to the A&E department where your mother would go yourself ....& to set her mind at rest, investigate how they are separating suspected Covid cases & others.Or call 111 & see what they advise?
I’m sorry I can’t give you more helpful suggestions...but as a last resort, if you could manage it, you could ask for a private referral to a Consultant Rheumatologist for a second opinion......but even that might end up in the same situation your mum now finds herself in...& it could become very expensive with all the tests & drugs that might be prescribed.
Treatment for rheumatoid arthritis is not an exact science.
I’m sure you will get many replies with a different take on the situation from mine...I hope something will help you & your mum cope......miracles do seem to happen....maybe her present drug will kick in.I really hope you can find a way to help her.
This is rubbish for your mum. I would choose a consultant from a different hospital and ask to be referred to them. 10 months is more than enough time to find out if it is working... 3 months is the usual time line. I am appalled at the care your mother is receiving. I had this with both my father and mother generally. Both I sorry to say have gone, my father in November. It’s totally ageist of your mothers rheumy team IMO. PALS at the hospital is another option however I’d look at scratching the rheumy you have and start again. Your mum should be having blood tests to check her inflammation levels. Her gp can get the district nurse to do those CRP, ESR and so on and she should get physio to help her not lose muscle strength. I do wish you well. It is hard seeing our loved ones struggle. 💕
In normal times in a perfect world all you say would apply.But unless you are lucky enough to live close to a large teaching hospital with a flourishing Rheumatology department ...right now we are having to cope with what we have got,& try to be pro-active with the rheumy team we are being treated by. Yes of course ask for physiotherapy and occupational therapy help ....but it will take time.
I do know I sound like PollyAnna... but with people being diagnosed with rheumatoid arthritis daily ...the likelihood of being referred to another consultant in the same area, on the NHS for a second opinion, is highly unlikely unless you are willing to wait a long, long time.
I know that is not what everybody wants to hear ....but we have got to be realistic .......until Covid is controlled we are not going to be able to pick and choose by whom and where we are treated.
I think we all understand now ....any clinical staff qualified to give an injection will be injecting Covid vaccinations.... not being reassigned to Rheumatology!
In my area you can wait two weeks for a rheumatology nurse to call you back...... of course that’s not ideal but it’s not their fault....... when a large part of your department has been deployed elsewhere but your caseload is increasing daily......what else can you do .....except telephone people back in the order they call you?
The NHS is struggling for its actual existence.... let’s face it we would all be in a far worse place without it......so let’s give all the staff who do give their all in Rheumatology a chance....they will help us...maybe not as quickly as we would like...but at least they are still there.....for now.
I agree with much you say ... sadly though some people are being left out in the cold for no good reason and 10 months on a med being told to be patient isn’t fair or realistic. Waiting patiently is fine when you know you are being taken seriously and not being fobbed off. My post was a bit full on because I have seen too many times a different attitude those who are younger. It makes me rather angry as you may have noticed 😏I do agree about working with what you have ... there is a time to call it quits and start afresh... new eyes. No harm in asking for a second opinion and probably the least contentious route.
I agree with this actually, Mum is only in her 50s but I noticed that when I sat in on appointments they would talk very differently and seemed a lot more proactive.
Have you tried encouraging your mother to get up and move about a bit? Treating RA isn’t all about drugs....we have to get our heads around the fact we have an incurable disease that is not going to go away in a hurry,.... so we have to accept that & work out a way we can deal with it. Everybody deals with it differently.
You say she has been diagnosed for three years....has she made any progress at all during that time ? Do you think she has accepted her condition? Maybe she should be having a word with her GP about having some sort of therapy to cope....rather than taking to her bed & relying 100% on a new drug?
Our state if mind has a great deal to do with how we cope with this disease. She is a young woman....Does she have an active social life?
I was diagnosed at her age and sometimes I had to force myself to keep social appointments .....but I felt if I just stayed home and nursed my pain I would never progress in my treatment. Of course with the present lockdown that will not be easy but is going for a short daily walk with her a possibility?
Do you live with your mother or does she live alone? At the beginning of this disease living alone is very difficult especially if you have let your social life drift away. Everyday tasks seem insurmountable.....but there is usually a way.
Do get her to write to her consultant explaining the situation or maybe she could speak to her Rheumatology nurse ....or as I said before..... see if she can get on the urgent appointment list as long as she can make an appointment at short notice.
You are obviously worried about her.....but realistically with the present shortages in staffing levels in Rheumatology ...do try to encourage her to do a littler bit of exercise. Does she read this site...maybe that would help her to realise that many of us have gone through what she is going through now and come out the other side....to help her realise that things will get better....RA does not mean we are invalids...there is a light at the end of the tunnel...but for her right now it’s a bit dim.
I’m sure if you can persuade her to be a little more active things will improve for both of you.
Yes I understand what you are saying. Acceptance of a life long confusion is so difficult and she has had CBT at the beginning of the pandemic to help with managing low mood and anxiety.
To her credit, she pushes herself most days to get up showered and dressed, she still does housework and hobbies and she has a lot of friends and family she speaks to everyday.
More often though, she has days where she actually cannot get out of bed, her knees lock in a bent position and she cannot lift her arms above her waist so cannot reach the grab rail (she has had an occupational therapy assessment). I think it’s very difficult to not rely on the hope of a drug when she responds so well to steroids and people we know with RA who once struggled now live a normal life since finding the right medication.
Did you know you can self refer on the NHS for physiotherapy?That sounds more relevant than OT at the moment for your mother’s knees?
Yes steroids can be great help......for a short time..... but I feel they are the drugs from hell ...they draw you in,& .... it is very tempting to get reliant on them....& you can read here how difficult it is to get off them....not to mention the side affects that appear the longer you take them.
The fact that they have helped your mother in the past is really no indication how she will react to Dmards or Biologics. I have managed all through without them as I was found to be allergic at an early point in my diagnosis.
.Just look up “NHS physio ...self referral in your area”.....your mother will need to answer the questions & fill in the form with her physical details.Of course right now it might not be as fast..but I got an appointment within a month.
I’m afraid at the beginning with RA it does seem one step forward & ten steps back.....acceptance & determination are key.
However as it was recognised at the beginning of the pandemic that your mother would benefit from CBT.....maybe a refresher of some sort would lift her mood.....right now I think the daily bulletins are difficult for a lot of people who are feeling 100%....let alone for those struggling with another disease.
As has been said here your mother should write to her Rheumatologist...cc Rheumy nurse & GP...with a resumé of her RA journey & see if that will bring forward any helpful solutions.
Your poor mum. Ten months is a long time to wait for meds to start working. But so many rheumatology doctors and nurses have been reassigned to Covid care at the moment. I agree with a lot that has been said on here. I suggest your mum sends an email or letter direct to the consultant, copy to the GP, stating how much she is suffering, that meds are not having an effect after ten months, and asking for urgent help. Try to keep it factual, positive and polite. All our medics are under huge strain at the moment, especially in the hardest hit areas.
I just wanted to say how saddened and sorry I am to hear this as as a daughter of a mum who had RD and as someone who has RD herself I do understand your concerns and frustrations and feel that this virus has thrown services and options usually available into chaos. In normal times I would have suggested physio and occupational therapy and may be if your mum was struggling to get to the hospital to have a referral for the community physio to come out if you have this in your area, although at the moment I am sure this is either limited or non existent with covid. Again Occupational therapy can come out under normal circumstances and do an assessment to see if there are any gadgets, gizmos or alterations that may be of hep within your mum's home to enable her to move around and with daily living. Even so may be a call to the department to see if they can offer any suggestions in the meantime given the current situation, say with gentle exercises or massage to maintain her movement and perhaps relieve some of the pain. As you have probably gathered by now there appears to be such a difference in the UK, parts of the country etc as to what service and resources are available and it sounds like you are proactive in wanting to help your mum so perhaps check out what may be available in you area. I would always back anything up with a written record these days as I have learned only too well a telephone call can be forgotten, the person may have left, there is no record of any call. It is so hard seeing your mum suffering and I know this feeling sadly only too well and you want to help get her the support and treatments she needs, versus the dilemma of her becoming bedridden, suffering ,the fear of catching Covid and knowing what is going on at the moment within the NHS. I'm sure working for the NHS I don't need to tell you that though. Wishing you good luck, take care of yourself too and let us know how you get on wont you. Sending some warm, supportive wishes to your mum and you xx
I'm shocked and disgusted! Not good enough by far! I was raging about it having taken me so long to get a diagnosis but I have to say that since getting one I have had ,and continue to have very regular follow ups. They have had to hold back on the referral to O/T and Physio for the time being but I'm fine with that given the situation! I would most definitely be taking this further! And a big thank you for all you are doing too! Xxx
Thank you for all of your comments and advice everyone, it means so much. I think sending photos is a great idea. Something I missed out is that thus far the rheumy blood tests have all come back normal which I think the nurses interpret as her responding to the medication (even though her symptoms say different). I find myself wondering maybe it isn’t RA after all. I remember crying when she got the diagnosis as I thought she would finally get better but alas things have got worse and I find that difficult to accept. Especially as she is only in her 50s.
Next on my list is to find out her latest blood tests that GP ran as apparently they are abnormal and he wants to talk to us about it. As much as I don’t want it to be anything bad, it is a step to actually talk to someone, even if it is just the gp.
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