I wasn't sure what group to post this in so I hope you can help me.
I have since January and possibly before that had an ongoing catalogue of symptoms resulting in many doctors appts and blood tests, my ESR and CRP levels have slowly but continually been rising and a few weeks ago I had a referral to a rheumatologist.
The problem is there is currently a 31 week wait on an appointment. Meanwhile my life is kind of on hold, I'm having to lower my working hours meaning financial restrictions and socially I can't do too much. I know there are people in much worse positions than me but I was really hoping to get some advice. Unfortunately I can't afford to go private for initial consultation.
Thanks in advance
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Broomesa
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Has your GP given you anything at all? He / she could give you a course of steroids (usually prednisolone) to tide you over until your rheumatology appointment. Or an injection of steroids is another way.
Also NSAIDs could be added to the mix, such as Diclofenac, ibuprofen etc. And paracetamol should not be underestimated in conjunction with other painkillers and taken regularly. Just don't take more than the recommended dose as it can be fatal at quite low doses, although very safe if taken as directed.
Also you could try calling the hospital and asking about a cancellation. You may have to keep calling but sometimes it can get you in sooner. People cancel all the time in rheumatology as they just can't make it there.
My ESR is 30 and my CRP is 20 so still relatively low.
I am currently taking mefenaic acid, codydramol, and also amitriptyline in the evenings.
Apparently after speaking to the hospital last time there cancellations don't work like that anymore, they just phone the people at the top of the list and offer the appt first.
It is such a frustrating situation. Every time I see my gp I just get more blood test and more painkillers.
Sorry to say you might have to get used to the blood tests.
Seems like most of the painkiller avenues are covered (apart from paracetamol- ask first), but steroids are still an option.
They may not want to give you those in case it masks the symptoms but you could ask.
Other than that, I'm a bit stuck. Apart from the usual pace yourself, don't do too much (break jobs up into smaller jobs etc), drink lots of water, try and get plenty sleep.
Make a list of questions for when you do see the rheumy and write down any symptoms you may have.
Sorry can't think what else to suggest of the top of my head.
I take it you are on the list for cancellations or is that just the list of appointments? If so what happens to appointments that are cancelled at short notice?
I am starting to get used to them, seems everytime I see the gp I have to get bloods done.
What type of questions will they ask at my appt? Just so I've got it all written down so I don't miss anything out.
I have just phoned again to double check and she said they get offered to people towards the top of the list. She also confirmed I have approximately 27 weeks left to wait for an appt.
The NHS is really beginning to creak under the strain these days. Shame, if only politicians would realise the true value of it, I know I'd be happy to pay more tax if I knew it was going to that and not replacing trident.
They will probably just ask you for a history / timeline of symptoms and things like which joints hurt, do you get morning stiffness of the joints, how long for, what do you do for a living. The kind of stuff you'll probably know only too well. Although if you write it down you won't forget anything because the unwritten law of rheumatology is that the day of your appointment you will wake up and feel like you could run a marathon, and the day after you will be as bad as it's ever been. 😀
Make sure you write down any questions or concerns you have, prognosis, daily living, medications (side effect, success rate that kind of thing), alternatives to the med they offer (i.e. why that med in particular), what to expect, what do you do in an emergency, and anything else you can think of!
That sounds like a pretty good unwritten law, some days I think maybe it's all in my head because I have a good day, the next day is just there to prove its not!
I will keep a diary of symptoms from now u til then, they will probably have a lot of reading
Have you asked your GP if there is an alternative hospital you could be referred to? I'm in the middle of moving rheumatologist and have a 24 week wait - which I thought was bad enough but 31 is really awful! Guidelines are 12-16 weeks....
You can theoretically go to whichever hospital you like, if I recall correctly.
Would depend how desperate you were, how far away it was and if you could keep going there for some time afterwards. Speaking from experience travelling any distance becomes a faff after a while.
Hi, live in Cardiff and in the same boat. Symptoms started in December and got referral in March. 13 weeks today and was told Tuesday by hospital it's 31 weeks, not impressed is an understatement. Hope we get seen by new year lol.
That's a ridiculous length of time to wait in my opinion. Does the hospital have a PALs support group (I can't remember what the acconym stands for Patient something!!!) that you could speak to. You could try asking to be referred to a hospital with a shorter waiting list and travel to see them and after the first consultation (or 2 ) ask them to refer you to a department closer to home.
Ring the NRAS help line they will be able to advise you further and they are used to solving these kinda issues.
Keep turning up at a&e if your in chronic pain so your brought to the fore.
Please don't keep turning up at A&E. Sorry to disagree Ali, but A&E services are for emergencies. They are staffed and equipped to deal with traumas and are extremely expensive to run. Every time someone turns up there with a non-emergency, it uses up NHS funding that could be used elsewhere in the system. The result so far has been that other NHS services are starved of cash, so they get worse and worse, and people turn up at A&E more, and it becomes a vicious circle, with rising costs and falling standards in other NHS services to support A&E demand. In England, NHS commissioners and the government are now trying to deal with it by closing almost half the A&E departments in the country, to try to cut the costs. The one in my town will be gone within 3 years... People will then probably be less likely to travel to the next town with non-emergencies, so the costs of A&E services should fall, but of course that means people won't have any emergency service in my town either. And since hospitals without trauma services can't deal with complex and life-threatening care either, it means we'll also lose our cardiac care, all surgery except minor stuff that can be done under local anaesthetic, most maternity care, etc... The whole hospital is likely to close within 3-5 years...
It is unfortunate that you can't go private but that is a long wait can you access a hospital that is further away as doesn't the NHS have time constraints nowadays?
If there is going to be numerous appts I don't think I want to commit to a longer journey, I have to juggle work commitments and 2 children. I guess I will just have to suck it up and wait
I had a 5 month wait for first appointment. and have had to wait as long as 18 months since!!. its terrible isn't.. Nhs has had such an influx of new people from Europe even a drs appointment can be up to 3 weeks, its buckling financially too.
Remember that without the people from Europe you would have an even longer wait as they make up such a large proportion of people staffing the NHS - shortage of money is the main problem, the proportion of our GNP that we spend on the NHS has reduced and is now lower than any other developed country. We are also not training enough of the medical team, whether it is doctors, nurses, OTs or physios.
Wales has had problems recruiting staff and many posts are left unfilled for months to save money.
It is sometimes possible to accelerate the appointment via your GP asking for a more urgent one. Worth asking, anyway.
Spot on oldtimer, without all 'these bloody immigrants' there wouldn't be an NHS.
It would have buckled due to the chronic lack of funding and back-door privatisation methods that are being used.
A real bug-bear of mine. Don't they say you can judge a society by how it treats those most in need?
Rant over.
😬
Hiya Broomesa!
A squeaky door gets the most oil, and you have quite a lot to squeak about!
Even the busiest GPs and hospitals will try to accommodate people who are really suffering and who persistently, but politely, point out how badly the waiting is affecting them. Or at least that's my experience. There are some areas of life where reasoned argument doesn't make a blind bit of difference but I wouldn't put the NHS in that category just yet.
These are the things I'd mention, perhaps not all at once, perhaps even more informally than I'm wording them, but I'd keep going until I got a result. (I would also try to be 'charming', which is the bit I find hardest!):
- As others have pointed out, there are guidelines for referral times for patients with suspected RA and 31 weeks is in breach of those.
- You are suffering physically, emotionally and socially (describe as necessary).
- The drugs you're on will not control inflammatory arthritis so you could be beginning to sustain some joint damage.
- Disease controlling drugs for inflammatory arthritis take a while (often months) to take effect. This is a key reason for being seen as early as possible.
- Many rheumatologists will prescribe a short course of steroids or a steroid shot to give relief while disease modifying drugs take effect. But your GP wouldn't be helping you by giving you these now as they could easily disguise symptoms ahead of your rheumy appt. Therefore this is another door that is shut to you while waiting.
- Work! Your livelihood! These are suffering and this is of huge significance. The NHS has it within its power to keep you financially independent. Tell it to do so. (But don't forget to be 'charming'!)
I am sure you'll be able to add a few more items to this list. I'd start with the GP I think, either by phone or face to face or perhaps a letter.
Maybe that is the way to go. I've been about 10 times since January. I will just have to keep going and tell them it's really affecting me. I might even write a letter, see if they can get me bumped up the list at all.
Thank you for all of the advice, I really appreciate it
It's water on a stone .... I think writing a letter is a very good idea. You may feel that being a 'good patient' means accepting what appears to be the status quo, but if you keep pushing, always reasonable, letting them see some emotion but avoiding anger, putting your case etc. etc. then something may well give.
I am never *&^%ing furious, not officially, I am 'very concerned'. And if my income and future were at stake I'd be very, very concerned indeed. Surely someone somewhere will understand that at the very least.
Hello Broomesa . Firstly I am shocked and horrified that you have such a long wait. My mother lives in England and she has mentioned to me before that the NHS is on it's knees. I guess I never fully understood the extent. I know for sure I will never ever complain about the medical treatment I receive.
I am so sorry you are going through this. I can't imagine what you must be enduring. I'm sorry that I can't offer you any concrete advice , but I wanted to tell you I am rooting for you. You are in my thoughts.
Hi Broomesa, and welcome. Since you live in Wales not England, the NHS arrangements and processes are a bit different for you than for many people here. The NHS Wales standards say you should be seen within 26 weeks, so 31 weeks doesn't meet that standard. And 26 weeks is already a long time...
You do have some options. I don't know how well they'll work, but they're worth a try:
- Ask your GP to write to the hospital to 'expedite' your referral. That means the GP asks for you to be seen more quickly because your needs are more urgent.
- Phone the hospital appointments dept directly, and keep phoning. Like postle says, squeaky wheels are more likely to get the grease!
- Talk to your GP about referring you to another hospital instead, if somewhere else has shorter waiting times. Your GP should be able to find out whether it'd be quicker for you to be seen in, say, Swansea. Generally in Wales you don't have the right to be seen anywhere (unlike England) but if you can't be seen within 26 weeks in your own Health Authority, you do have a right to ask to go elsewhere.
- Contact your Health Authority directly to complain and ask them to resolve the problem. The HA has powers to intervene and ask a hospital to see you more quickly, or to arrange for you to go elsewhere.
- If you're desperate, and it's an option for you, you could consider trying to access rheumatology services in Bristol or Bath. I don't know how that's done, but I do know of people living close to the borders in Wrexham and Flint who have somehow accessed NHS England services, so it may be worth investigating. There may be shorter waiting times, and/or the quality may be worth waiting for - especially in Bath, where there is a rheumatology centre of excellence.
I absolute agree Flow4 re A@E but if your in a state of untreated chronic pain and inflammation for prolonged periods then the tole on heart health, joint health and mental health puts a patient in need of emergency care... not because of a sudden unpredictable event but due to a relentless inability to get access to appropriate treatment through non-emergency channels.
Good luck Broomesa here's hoping you'll get seen sooner rather than later.
Hi Broomesa. Welcome to the forum. You seriously cannot wait 31 weeks to be seen. You need to keep ringing for a cancellation. In the meantime go to your GP and ask for some painkillers. It is very important that you start treatment as soon as possible for RA. Any damage done in the next six months can't be undone. Good luck.x
They appointments don't work like that unfortunately, any cancellation is offered to patients at the top of the list. Ive phoned numerous times, looks like unless my gp can help I don't have many other options than waiting.
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