My rheumatology department has been stripped of staff…
When I was first was diagnosed my treatment was amazing. i had a rheumatologist . A designated nurse who knew me by name easily contactable and never left me to suffer. A helpline everyday with immediate response and help. No problem getting an appointment and never felt alone . Communication second to none. Tests results relayed to me notes up to date , clinic a hub of activity . I was never without medication or adjustments. I felt cared for.
Now none of the above exists.
I ordered my MTX on answer phone with secretary over 6 weeks ago . I sent emails to prescription email also as I hadn’t received my prescription. The secretary has been constantly engaged for 4 weeks. I tried emailing other rheumatology secretaries. ( they all work for numerous rheumatologists) There is no other way to contact Rheumatology. I sent a letter to PALs but yet to hear a reply. I hadn’t been contacted by my home care for delivery of Rinvoq. I rang them but they hadn’t received a prescription from the hospital so couldn’t issue them . I am now on no drugs!!!!
I am now flaring !!!
I decided if I couldn’t go down the designated route then I would have to be a pest . I decided to send an email to secretaries in other departments asking them to contact mine . This was on Friday . Yesterday ( Sunday) I got an email from my secretary full of apologies saying there are staffing issues which they are trying to address. I now have an appointment tomorrow at 8.30 for a steroid injection and I will see a locum.
If I wasn’t so stubborn or cunning I would still be suffering for weeks to come .
I did complain on behalf of others as I can’t be the only one and I bet many have hit a dead end and don’t know where to turn .
So looking forward to my steroid .
That’s it I’m exhausted
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J1707-
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So sorry to hear that, must be absolutely exhausting. My department has always been very good although (as my consultant acknowledged would happen last year) a six-monthly appointment will be at least a year. As I'm not having problems atm that's ok for me and I just hope that those who are are getting in sooner. However, when I rang the appointment line to get an idea when I was likely to get an appointment she said that my consultant was retiring at the end of August and they were trying to appoint a new one. There are others in the department but I hope that this isn't the start of the sort of problems you (and others on here) have been having 😕
Good for you! Sorry to say that my department has been rubbish for years. I don't blame the staff, most of whom are decent people. The system is stuffed. Glad you will be seen.
My knee is flaring up at the moment. I'm trying to pluck up the stamina to phone my GP! 😵💫😆
I am definitely in the same boat. Excellent service for 8 years. Over last 3 years, I have had 4 different Rheumatologists, some of them locums and just as I was getting settled with current Rheumy, they have now left. Haven’t been seen for a year, which was OK as self managing to an extent, however major flare in August and had to see an emergency GP while away on holiday for oral steroids. Contacted Rheumy nurses helpline which is only operational 3 days out of 5 and only in mornings. Had a telephone consult with Rheumy nurse. It appears I had never been transferred onto new Rheumy’s list!!!!! Due to Rheumy and Rheumy nurse shortages, I will now get a face to face nurse consult in 8 weeks to review my medication.
It’s not the only department in dire straits in my Health Board, I had feet surgery in April and was supposed to get my final 12 week post op review mid July. Rang them in August and same story, staff shortages, but I would eventually get followed up - still waiting for that appointment. I had to wait 7 weeks for a pelvic ultrasound scan, then it was cancelled due to guess what, staff shortages and now rescheduled for a further 8 weeks wait. You have to learn to be very proactive in order to circumnavigate a rapidly deteriorating service. Well done, for going round the houses to get your needs met - I salute your ingenuity.
The guy ropes that hold you to that mountain are fast being unhooked for all of us and it’s a travesty and a tragedy of this day and age.
Over the past 34 years I’ve had the same great experience as you - fully staffed department, always somebody on the end of a phone, a named and designated nurse and a feeling that I was known and the continuity of care, so important, was like a wrap-around comforting blanket.
Going, going………not quite gone - but my consultant who has looked after me for twenty of those years has just retired, the biologics nurses numbers have dwindled from eight to one full time and a part-timer, the helpline has been taken over by emailing the department and I feel that’s all just another nail in the NHS coffin. Patients certainly aren’t being served well and having to do our own catching up, phoning round, waiting interminably for results and appointments causes more stress, illness and infirmity.
I just hope someone in the new Government is going to get a grip but having worked as a clinician in the NHS for nearly 50 years and seen one health secretary after another promising endless new innovations I’m not holding my breath!
I’m still getting good care from my rheumatology team and these days I’m grateful if I see somebody face to face so haven’t quite despaired completely but haven’t much hope for improvements whilst the current state of affairs continues. Do hope you have some pain relief with your depo shot and keep fighting!!
I wonder how many of us are in this position.. maybe NRAS can help us our care is virtually non existent.. I had 16 emails from the hospital today amazing what a complaint can do . I did not blame any staff just the situation.
Suspect nearly all of us can tell similar stories. I guess the only thing to do is keep on complaining but how depressing it all is when you keep on hearing all the stories of lack of staffing and care and nothing changes. We must keep shouting!
Oh gosh, that’s awful and you shouldn’t have to do all that as it’s so stressful, but it helps indeed if you’re proactive and keep at them. (I’ve had to chase nearly every day all summer, re the Abatacept saga. Argh.) Please ask them to ensure this does not happen again to you. I’m glad you emailed them re your script and sent a letter to PALS and hope you hear soon. Hope you soon feel less ouch. 🩷
I agree with so much of this - our rheumy tea has also been stripped to the bone and communication is poor - a helpline which is open 2 hours a day Mon-Fri is either constantly engaged or out of use due to lack of staff. The staff that are available are worked to exhaustion. I was looking at paying for a private consultation but held back when I found that I was paying to see my NHS consultant !!!!!!!!
Over last 8 years have been losing NHS staff and as new Government stated yesterday first time in 60 years NHS is actually going backwards . But with that said I'm still grateful I receive my medication for free .In other countries some insurance companies won't pay for it or you'll receive a cheaper alternative. If you're not in work you get the basics meds . I'm grateful we aren't privatisated,and still receive free healthcare ,not perfect but hopefully new government can stop staff leaving
It's simply a case of DIY these days. If you don't make a ''pest'' of yourself, you get nowhere fast. I can identify with your experiences totally, not only with my Rheumatology Department, but also my GP, my daughter's Epilepsy treatment & my other daughter's Mental Health Department. The systems are broken. We are living in a different world. To all those people out there who are reluctant to make a ''nuisance'' of themselves, just go for it...there is no other way to get the help you need (eventually). I, too, am exhausted with endless phone calls, emails, letters & personal visits to sometimes get the help one needs. Too many people, not enough staff & perhaps, worst of all, no one seems to care. Sad stuff. When you actually do get someone who is on the ball, it is a huge relief as there ARE actually a few out there who are worth their weight in gold. I worked in the NHS for over 25 years. It is unrecognisable now.
Good for you J1707. It’s true. We all have to stand up for ourselves & get what we need! I have my infusion every 6 weeks. But i had a MASSIVE flare a few yrs ago. I could literally hardly walk. All my joints inflammed. Every single joint. I definitely needed a home visit. But of course. They don’t do those anymore. We had 2 walk-in clinics every day at my gp’s surgery. (I go to a nice practice that’s part of LSE). They don’t have any walk ins at all now. When i had my massive flare. I rang my infusion clinic, in desperate tears. The nurse was very cold. She just said if it’s that bad go to a&e!! I could hardly walk!! I was shocked. I rang 999. They wouldn’t send me an ambulance. The operator nearly told me to get off the line! I felt so alone & scared. The op then just said if it’s that bad. Call 101. They knew how desperate i was. So they sent a coup of ‘paramedics’ & a clapped out old amb. The guys were nice. But not medically trained. My lift was out of order. (I live on the 4th fl). They didn’t bring anything. Not even a walking stick! Luckily i found 1 in my wardrobe. I eventually got to the hosp. I saw loads & loads of patients waiting. I felt so miserable. Then the guys wheeled me into a quieter bit. Was so relieved. Only waited a coup of hrs. A lovely big matron came at me with a steroid injection. I told her she was lovely! She said not many people say that when she’s stabbed them with a needle! I laughed out of total relief!! I was an emotional wreck. The pain was indescribable.
Then i got a cab back. A lovely cabbie helped me out of the cab. I went home. Got a gorgeous big bowl of soup. A lovely hot cuppa. Hobbled into bed, put a comedy on my tablet. Then slept for hrs & hrs. THERE’S NOTHING LIKE YOUR OWN BED WHEN YOU’RE NOT WELL. Hope your steroid injection gives you as much relief as i got. Good luck x
do you have to go through hospital to get your mtx? Odd, as when I was first diagnosed some years ago the prescriptions I need (done by consultant at hospital ) all goes through my gp on repeat prescription. So every month I just go on the nhs app, order and a few days later go to Boots and they’re ready for me.
My health authority doesn't permit GPs to prescribe the injectable form of Methotrexate so when I changed over from tablets, the shared care arrangement for that was cancelled. For some reason, my Sulphasalzine is connected to the Methotrexate so that is also provided by the hospital whereas my Hydroxychloroquin comes from the GP - go figure! Luckily my RA department has a dedicated prescription line and it's own pharmacy department at the hospital so I get my medication within a week or so of ordering and they post it out to me too. 🤞 it continues!
And another example of the inefficiency of the health service. No joined up system. Departments/health professionals can’t or won’t talk to each other.
Similar. We moved from Kent to north Norfolk in September 2017. Between then and February 2023 I had two F2F appointments and one telephone. My rheumy left, along with one other and neither was replaced. In disgust I moved departments to the Royal Free in London. Service there has been much better, same (good) consultant, continuity, thorough, reasonable communication etc. But it is a pig to get to from where I live and the journey stretches my resources to their limits. I'd much prefer to be treated locally - but do I trust the local department to deliver? And how would I find out? So I'm staying put for now - so probably for ever as can't see improvements coming any time soon!
Unfortunately J1707 I think most of us could have written your post. …..and sadly the situation almost everywhere is as you describe.
As you say, we all have to think outside the box & use every wile available to ensure we get what we need. The one thing I think we should all try not to do is rant at the person who answers the phone.
My hospital like a lot if others had to transfer rheumy clinicians in all grades to cover Covid, and many of them never returned…& tbh the nurses who did return to rheumatology seem to have been returned from any old where…with rheumatology not being their specialty.
Only time will tell how different the situation will be this time next year. ..so we live in hopes.
As a many years NHS person I know I'm so glad I'm older. There are so many issues with the system now it's a wonder it's all hanging together at all. Money haemorrhages from the NHS in so many ways. Why allow people to sue the system they one day may need. Why are there so many seniors it doesn't need and not enough people on the ground. Why is the NHS so politically correct, why can't we get people back to work like other industries? Why do you get to have four years pay without working even six months? Why do we pay people off long term unsocial hours money is there any incentive to come back to work? I weep for a historical greatness that will never be again we have reduced it to this with all the rules that tie the hands of others who care but can't do anything to fix it. The newspapers who blow everything out of proportion and have set the public against this great resource have some blame to take here. Those of us who have been part of it for so many years know exactly why it's going downhill. Listen to us who see what's happening blame is being laid where it should not be and no one sees it more than those who work in it 😔
So true Bethany..but until the general public get the message & realise that until an insurance based healthcare system like they have in Europe is formulated & introduced ……..chaos will continue to reign.
As you say….the NHS seems now to be run by unqualified politicians ….of any persuasion …no one party is to blame. ….. who throws tons of money at equally unqualified NHS managers who don’t listen to the clinical side of staff who know what needs doing, and as I say …..the result is what we see every day..
insurance based healthcare is only for fit people and ones with an income to pay not us who have RA and numerous other conditions and cant work now through no fault of our own! look at the poor people in countries with insurance based systems.
No that is not true. I have friends in mainland Europe ….they are not wealthy but get good medical treatment . The days of the original…NHS are long gone…through evolution…not only managers and politicians getting it wrong.
We Brits had it good for years & now we have to face reality…but in all the options that will be presented, there will always be a choice of the level we choose to pay for.
As a very senior citizen..I am not thrilled as inevitably at my age premiums will be high…but for the young people it will be beginning of decent medical care that has been deteriorating for years.
We are suffering in this area as well. Been losing staff from last Christmas. We are only able to contact the department through the week, limited hours. No emergency at weekends. Why is this not being shouted about from the roof tops. 🤨 We are losing well trained staff.
That’s horrendous and I thought mine was bad leaving me without pred Friday till Monday! It’s horrendous, we still have helpline only but I can’t contact my nurse. It’s awful that you have experienced this and definitely needs raising to higher bodies as the patient should not suffer due to staffing levels.
same thing has happened to me last time my baricitinib ran out! Hospital said prescription had been sent delivery 📦 said they had not had it. Back and forth getting more stuff and angry. In the end, I rang hospital pharmacy for help. She contacted RA nurse and finally I got my prescription activated. It has all gone sadly to the wall and when you are on a time sensitive drug you go down rapidly. So be proactive folks start chasing your prescription before it runs out. Best of luck J17
Same here. Always been seen to and helped at every moment. This time no meds and no Prescription . In The end my husband drove me to the hospital entrance we walked to the centre and insisted I see someone. We should not have to do this. All good now but will it happen again!!!!!
Got an email from my Portsmouth Rheumy team informing helpline no longer accessible by telephone message or email. Now have to complete a form on their website which will be looked at only 0800 till 1600 Monday to Friday. No mention of likely response time or even a target elapsed time.
Oh and constant posts on local FB stating don’t go to A&E unless it’s a life or death emergency. Can’t get to see a GP quickly either (my practice is two under strength). We are being set up to slip through the cracks!
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Abatacept supply issues.
Update on prescription .. update today 3rd
As Etta James said " at last" 
Worried about hand
