Hello, sorry this is a very geographically specific post. Does anyone else on this forum come under the care of Queens/King George Romford for their Rheumatology care?
I am just at my wits end and don't know what to do. I am in so much pain and I am having THE WORST TIME getting any help from the team.
Their helpline isn't a helpline - its an answerphone service.
Their longest record time for getting back to me is nearly 4 weeks.
How is this okay when I'm ringing in tears asking for help and advice because I'm in so much pain?
I just don't understand how this can happen? Who do they answer to and why aren't they monitored and kept to Key Performance Indicators?
Does anyone else struggle with them or is it just me?
Yours Sincerely,
Incredibly frustrated
Written by
Alex_bee
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I’m sorry to hear this, I’m not under them but have you spoken to PALS about this at all, might be worth trying or your GP to see if they can do anything or at least give you something to tide you over? I don’t think it’s just your hospital sadly, there’s often people on here saying the same about their nurses helpline 😔
Sorry can’t t help with that particular hospital, , but sadly I think a lot of people are in your situation in a lot of hospitals around the country.
Maybe having a word with your GP explaining you don’t seem to have been prescribed anything yet by your rheumy team that is helping you….he/she could have a word with your rheumatologist?
In the meantime maybe your GP could prescribe something to help tide you over until you can get a rheumy appointment.
Oh yes I come under queen's but used to see consultant at Brentwood community. Well if I tell you I haven't seen the consultant since 2020 you will understand. Thank god I manage to control my AS myself with some anti inflammatories.
I don't have experience of your hospital, but recently resorted to using PALS to get myself a Rheumatology appointment at Addenbrookes Hospital. There was an online complaints form to complete and this is what I wrote:-
'I have not been 'seen' by a Rheumatologist for 4 years. I have requested to be seen on My Chart and was told by telephone call in February 2023 that my case is 'urgent'. I recently asked on My Chart on 22nd June but nobody has had the courtesy to reply! I note now that I am unable to message using My Chart.
I feel I have been totally abandoned by Addenbrookes Rheumatology, I have severe disease and need to be seen. There is no support whatsoever anywhere in the NHS; my GP practice changed from (name) Group to temporary 12 months cover by (name) Health, but they have not been at all helpful with my ongoing elbow problems and I have had to make a complaint to Cambridgeshire & Peterborough ICB regarding their poor clinical judgement.
To reiterate, I am requesting an appointment to be seen in clinic by a rheumatologist, my case is well overdue for review.'
Within a couple of hours I received an emailed apology and a message on My Chart with an appointment for 20th September.
Don't sit there in pain, either ask to see a GP or turn up at A&E and complain to PALS. Good luck!
Try emailing/contacting the Asnet community charity group in the Ilford area for illnesses in Rheumatology. They are a very good charity to get advice from. Good luck
Try emailing/contacting the Asnet community charity group in the Ilford area for illnesses in Rheumatology. They are a very good charity to get advice from. Good luck
Sorry to hear your issues. I am at Broomfield Chelmsford and my support has been fantastic! Not that this info makes you feel any better but twenty mins up the A12 might be your answer. 🌺
You asked "I just don't understand how this can happen? Who do they answer to and why aren't they monitored and kept to Key Performance Indicators?"
They will answer to the hospital trust that they are under, and they in turn to the ICB. In my area the ICB has clinical pathway groups that oversee all the different areas and I sit on the one of them as a lay member. Theoretically they keep an eye on things, but a poorly preforming department may go under the radar. So if you have the energy or opportunity to become an Expert by Experience (sometimes called a patient partner or other terms) then do so. The more of us who sit on these boards, groups and committees, the better picture the trusts and ICBs will have of what is actually happening to patients.
from a patient point of view PALs is the best way to raise concerns, but beware, you might think you are making a complaint when you are not. If you just go to them to say you haven't been seen, they will arrange that you will be seen. If you go to them and say you wish to make a formal complaint, then the complaint will be processed and taken to the board of the trust, AND they will make sure you will be seen.
Try contacting either PALS or the CEO of the hospital. As someone else has said the important phrase is ‘I wish to make a formal complaint’. This should get them listening. Please keep us informed of your progress.
So sorry to hear that. Unfortunately the problem is pretty much wide spread. I've always found the best thing to do is email direct and copy in GP. Phoning anyone about anything these days is like slamming ones head in a car door repeatedly!
I’m also under them, originally was under Oldchurch rheumatology department then Queens. I had to keep phoning them and leaving messages, eventually I got an appointment after 3 years with nothing even though I’d been changed onto a different biologic at the start of the pandemic. Perseverance is the key to getting anywhere with them, I’m now back in the system and had an appointment in June and have another in November although I now have to go to Brentwood Community Hospital to see my consultant.
so I had a similar experience with my local hospital. And I just could not get hold of anyone. Their helpline didn’t exist. (Even when I finally got FaceTime with the consultant they couldn’t tell me how it worked) and emails would get an automated email response of we will reply in 3-5 working days. They never did!
I was trying to get hold of them for around 6 months and then to top it all off my biologic prescription was not renewed as they ‘forgot’
Anyway I was at my wits end so my husband complained via email to the chief executive of the trust copying in PALS. With in a week I had a face to face appointment with the consultant and head pharmacist. They had to change my biologic as I had been too long without. I was also offered a steroid injection to tide me over. I was kept updated with phones calls from both and copied in to emails of where I was in the process.
I was at a local hub and the main rheumatoid centre was at a different hospital so I was moved to the main hospital for care. I now have an email helpline where someone does answer within a day or so. And I was introducers to the nurses.
Throughout the process they kept asking me could my compliant be now marked as resolved. I was always polite and never shouty but I made sure to only say yes once I had the new biologic.
It’s unfortunate that it had to come to that but I now have a good relationship with the consultant who I would say would at least recognise my name and know my treatment. Before this I don’t think anyone knew I was there.
I am under the rheumy team there, I’ve had very good treatment, I’ve had RD for 38 years. I was contacted by phone for check ups during Covid due to being extremely vunarable. I also have my osteoporosis treatment with them. I’m on bio meds, plus Mtx and have 3 monthly blood tests. I’m seen at the Brentwood clinic for RD. A friend who sadly died earlier this year, wasn’t on any medication due to another illness, but was prescribed low dose steroids wasn’t seen by them or any contact for 4 years.
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Tired,in pain no end in sight.
RA flaring, bad experience with hospital. Struggling with waiting to be seen. 
