I am a patient of the Rheumatology Department of my local hospital and have been for nearly fifty years. I do from time to time have a need to ask them a question, as I suspect most patients do from time to time. I have in the last year or so found it necessary to contact them a few times regarding my treatment of Infliximab infusions which I usually have every six weeks as I have been in hospital for a couple of operations and had a few other complications that require medication that could interfere with Biologics. I have left endless messages on the Helpline with no replies and sent several emails directly to the department and again with no response. I know they have had a lot of staff changes in the last year or two but I cannot believe that there is no one picking up on the importance of these questions. Even my GP has said she has experienced a similar problem. Has anybody else experienced a similar situation and what have they done about it?
Contact with Rheumatology Department : I am a patient... - NRAS
Contact with Rheumatology Department
I personally don’t have an issue, after covid, they did away with the helpline, and you now have to doeskin to the secretary. So far it has been better as I generally get a call a few hours later. They usually put me on the cancellation list, and I’m seen within the week.
However in your situation, I would contact the PALs at the hospital-the patient advice and liason servuce. They act as a go between to resolve issues, without having to make a formal complaint.
Thank you for your reply. I have contacted PALS before but once again no final contact. It is so frustrating waiting for a reply that takes ages and ages to come. Thank you though for your suggestion.
So this happened to me, my biologic was stopped without warning. I had done all my part with blood tests etc. Contacted PALS and got nothing. It was starting to affect me being able to work and live life. I was contacting them every 3-4 days on a helpline and email. And would just get an automated response. This was over a couple of months.
In the end my husband wrote a strongly worded letter to the hospital CEO outlining what I needed and that they were not meeting their duty of care. How our attempts to contact them were ignored.
Within two days I had an appointment, unfortunately because it had been should a big gap I had to have a new biologic. But they managed that within a couple of weeks. What was even better was they were calling me most days to update me where I was at and Cc’ing me in to emails.
At my appointment I asked about the helpline, - neither the consultant or nurse could tell me who responds to it or the right number to call. I now have the nurses direct email as well as the consultant but haven’t had to use them since.
Hope this helps, I was being very British about it, not wanting to make a fuss. My husband is Australian and it worked!
Yes I have written to PALS but did not do any good. Only got acknowledgement for letter and would respond soon. No reply. I think I might have to write to CEO. Thank you!
Good luck and let me know how you get on. It’s horrible it had to come to that. But now I have a great relationship with the consultant, I am a local governess and she has even asked for my advice regarding her children’s schools. They don’t seem to be bitter about the letter. They just didn’t know I was trying so hard to get in touch.
The other thing I would do is get someone to read the letter. I initially tried to write one but I was so emotional, and the facts were getting lost. Hence my husband stepped in.
I think once you get the CEO involved they have 14 days to rectify your problem. WIth PALS it’s varies from trust to trust. Apparently they had a new pharmacist and no one had renewed the prescription so the home care team couldn’t deliver!
The sad thing is I am now ok and have contact details but I don’t know if it helped sort out the wider problem for others who are in a similar boat.
Yes will do thanks
I’m afraid it’s NHS these days, so hard for staff and patients. I know it might seem silly but have you the right number ? I wonder if popping into the clinic reception might help if you explained the issue. Best of luck x
Yes I have checked numbers and it answers with a message to leave your message but they don’t return the compliment. The actual department is in a separate pamrt of the hospital that they will not divulge where it is so it’s not possible to talk personally to anyone . Thank you though
I know this sounds daft but I mean go where you see the consultant or RA team in the clinic. What else can you do except write to them?
Unfortunately that is not always in the same area of the hospital and because there are three hospitals in the group it can be at any one.
That makes life really difficult.
I always email the nurses - their ‘base’ gets shunted round the hospital so much I doubt a landline could keep up. Always get a prompt call back
Yes I have the departments email and I use that but it is now answered by an administrator who says my email has been passed to the nurse to respond to. No response! Thank you for your reply.
I just got a letter cancelling an appointment I had already cancelled. Their letter ended
“We can’t tell you why the appointment was cancelled “.
I was speechless & just ignored it….
I’ve had that too. I think the problem is when an appointment is cancelled on the system it automatically generates a letter.
Yes that is where these oh so clever systems get so bloomin clever they muck up common sense.
I am going for an appointment where they tell me…..I’ve got to arrive 30 minutes before my appointment- telephone them from the car park to tell them that I’m there …..they will then phone me back to say when I can go up for my appointment. They add that this is a special number and I mustn’t phone it, except when I’m at the car park! Now who thought up that convoluted idea?
I live in an area which is between two NHS hospital trusts and I have dealings with all the hospitals. However one trust can’t talk to the other about my medical history. They have to rely on me telling them. I wrote to NHS England to suggest that all hospitals use the same history and patient information system so that no matter what or where in the country you are they can access your state of play. I did not receive an answer!!
That’s because whoever chose their computer systems was probably an expert in something but unfortunately not computers.
Just like most ssh have no idea how hospital priorities stack up & don’t know the difference between a bunion & an elbow…so when it gets to an .ology,,,,,they are finished & ask a porter!
They’ve been trying to do this for years but still not achieved it. It must have been 15 years ago I signed a form to say that other hospital trusts could read my medical notes as part of a pilot scheme. I far as I was concerned it was a win win situation and why wouldn’t you want other hospitals to know your medical history, especially if they are treating you in an emergency situation.
Could you ask the administrator to forward the email to the consultant instead? When I email the department I specifically ask for the email to be passed onto my consultant. It might not work for you but worth a try.
Hi yes I have written directly to him in the past to state my problems and never even received a reply!
That’s rubbish. I feel so lucky that my rheumatology department are so amazing. Last week I contacted my rheumatologist about a problem. I had a reply from her within 2 hours saying it would be worth getting some tests done and she would refer me to another department. Within 6 hours I had the appointment for the tests in 2 weeks time. Why can’t all departments be like that?
I am in a similar situation waiting to be seen by an elbow surgeon. I have been on their books for over 25 years and was well known in their orthopedic department in 2009 when my first THR was infected (by them!), but there have been so many problems trying to get an appointment. Pre-covid he always said, any problems between appointments, just call my secretary and I'll see you. I last saw the surgeon pre-covid, but no follow up made.
To add to things, our GP practice handed back their NHS contract giving 6,500 patients 5 weeks notice. Patients kicked up a fuss, petitioned etc. and within few days, the CEO of our local ICB had found an agency to step in for a year, now extended to 2 years (already 7 months in).
My left elbow needs replacing, agency GP marked x ray 'satisfactory, no further action' when the hospital report stated 'known RA, severe OA, chronic remodelling of the radial head.' All year, I have experienced painful partial dislocations and now, I have episodes of bruising from inside the joint, therefore it's affecting soft tissue. I complained to Practice Manager and ICB who then referred me to MSK triage. MSK triage referred me to hospital orthopedics which I had requested in the first place! Problem is, they've referred me as a new patient, not an existing one with 25 years elbow/shoulder history. I don't want to risk going backwards in the queue by asking for a specific surgeon.
I have chased by telephone but been told there's a 30 week wait, a 75 patient wait, a 2 month wait, etc. etc. Rheumatology copied the elbow surgeon in on his recent letter but according to GP, Consultants cannot expedite, only a GP can. Ridiculous! Agency GP (different one) wrote to hospital to expedite matters but nothing has happened. The bookings line haven't seen any letter and all 3 secretaries don't answer their phones and some lines have no voicemail facility. When I have left a message they don't call back.
It's so frustrating being tied up in a system, I expect my usual surgeon is blissfully unaware of my current problems and I have no way of contacting him directly. I am at the point of either turning up in A&E which latest GP told me to do if it fully dislocates or writing to PALS & now CEO, as others have said above. I have considered paying to see the surgeon then going NHS for the surgery. Hopefully they wouldn't strike me off the waiting list if I took that route.
I know how you feel and I have just gone through a similar experience. I already have a prosthetic right elbow joint and have had three replacements now. Four years ago the spigot that goes up inside the humerus broke through the bone. I had it replaced by an excellent surgeon at Addenbrookes in Cambridge and earlier this year it happened again. I had an appointment for another operation but it was cancelled two days before. I am waiting for another appointment. In the last two weeks I have had a spinal stenosis operation which has resulted in a blood clot in my leg. Taking pretty drastic drugs to brake it up, hence the reason to get ok from Rheumatology to have my six weekly infusion of Infliximab.
Same hospital!! I've been told elbow replacements might only last 10 years or so, hence why I've put them off for 25 years.
I had subluxation of C3 onto C4 back in 2001/2 and an Addenbrookes Neurosurgeon decompressed and fused my neck C3-C6, but that was done privately nearby. That went well. He's still around and has done the TV programme same as my elbow surgeon - you know who they are now.
I assume the Clexane injections were not enough post op for you? Pretty poor isn't it when you are in dire need and can't get any help, it's like the admin people put up so many obstacles to avoid you getting to the surgeons.
I had the same problem getting through to our rheumy advice line. Luckily I managed to join the MSK group at our ICS which is a group from right across our NHS area, so full of physios, orthopaedics, managers, commissioners, you name it. I am the only Expert by Experience, so I always feel a little hesitant when I speak up, but I decided I needed to say something about the rheumy advice line. I didn't need to worry. A GP backed up everything I said as GPs use the advice line too. A meeting was called to discuss it!
So my advice is start looking for opportunities to volunteer as an Expert by Experience within your local NHS trusts and ICS. NHS England has declared that patients must be involved more in the running of the services. It varies across the country, I am lucky in that the trust where I am an Expert by Experience treats us well, better than the other trusts or ICS in our area, but boy, once you get the patient voice at the heart of the decision making machine, things can change!
So sorry to hear of all your problems with your local NHS. I'd be inclined to write to the Chief Executive of the Trust involved. I worked in the NHS for over 30 years until I retired some years ago, the last 15 being the complaints and litigation manager. I know systems change but all written complaints to our Trust had to have a response from the Chief Executive although they had been investigated by me and the relevant director of the service. I did a board report every month about the complaints and it certainly made staff very aware that complaints had to be taken seriously. I would imagine if you write to the Chief Executive he will want the Rheumatology Department to give a full and detailed explanation of their actions and respond to you as he will have ownership of the complaint as it was sent to him. Sorry it's such a long response but it's bad enough having poor health and the anxiety that brings without being treated shabbily. Good luck
Yes thank you for your reply. I have written before to PALS with no proper reply so perhaps I do need to write my complaint to the CEO.
Interesting to see someone on her who has had RA as long as me almost 50 years! I would say bombard the department on all fronts! Send an email to the dept, phone the secretary of your consultant, don't leave a message unless you really have to, get them on the phone, the advice line too and if that doesn't work write into your consultant by post. My last rheumatoid appt was 15 months ago and 1 is booked for December. Fortunately my rheumatoid is stable but ! am on baracitinib and I am apparently too old for it so I hope they don't take me off it!
It is so difficult these days. I have been waiting 27 months for an elbow replacement. I have seen 5 different orthopaedic consultants in 3 different hospitals plus a spinal consultant and I have just now got to the point of having a pre assessment and that's been cancelled once already. What a waste of NHS funds! They sent me to 2 inappropriate hospitals that don't have the skills to do an elbow replacement and it took me 1 year to find that out after waiting ages for appointments. Most frustrating situation Maybe I'll get it by Christmas who knows!
sorry to hear your RA department is letting you down. My experience couldn’t be so different, I rang helpline on Friday to discuss my next retuximab infusion as fatigue is getting bad. RA DAWN nurse spoke to me yesterday and had an in depth conversation which was like seeing her in person and after talking to her she is contacting infusion unit for my retuximab appointment and sending out the blood forms.
My hospital is Royal Berkshire Hospital in Reading and they always answer their phone messages.
Hope you get some answers soon x
Wow that is excellent! You must have a service that is an exception to the norm
……..Not only the CEO as mentioned by others but your MP too - and go to the local paper if you get nowhere. Don’t be afraid of doing any of those things - the NHS is a service like any other and is obligated to provide patients with the care they are entitled to and if you don't get that care promptly then you need to shout about it.
Nothing will change unless we all start making a noise about what’s going on. It’s not the general staff’s fault, it’s management of the hospital and they need to know but if no-body tells them it’s all going wrong they can’t know.
I have worked as a senior Sister in the NHS for years (am now retired) and am appalled at what I’m reading - the experiences of people writing on here shouldn’t be happening and they need to be highlighted. Don’t wait, write today and as Zen says, bombard the department on all fronts and go right to the top!
Best of luck and hope you get the results you need and deserve.
i have my consultants secretaries email, so if I need my consultant I just email her , she passes on my email and my consultant then rings me, she is amazing x
My rheumatology service is very similar to yours....completely lost confidence in them! Before Covid they were bad but now they are even worse....its like they've lost interest in their profession!
yes mine is the same! I guess with so many more patients and less staff they just can’t cope and feel they are not getting the rewards they have demanded. Mine still haven’t replied to my question and I go for my next infusion next week worrying am I doing harm to myself. Because they haven’t replied I think they just don’t care!
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