How do you actually get any help?

silverfoxxxx

Hi,

After coming off of my Sulphasalazine and knees fully swelling back up I finally, after nearly 6 months of waiting had them drained, unfortunately within a month my left knee is fully swollen again and painful to walk on..

When I left the injection clinic I got the normal, call us and we’ll get you straight back in if it swells up, 3rd week of phone calls now and I can’t even speak to anyone about getting an appointment, apparently the secretary has emailed the consultant 4 times asking if it would be ok to book me back in for another drain of the knees this close to the previous one and had 4 non replies, this is a service we all pay for and they can’t even answer an email with a simple yes or no.

Life is hard enough as it is and I get fed up with the lack of communication in a world we’re communication is now so quick and simple.

stickywicket

I'm sorry you're having to learn the hard way but this is how things are these days in the NHS. There is not enough moey to pay for basics such as GPs, consultants and nurses. So we all have to queue. I'm currently queueing for a slipped-out-of-place hip replacement to be looked at. Meanwhile I have to go against all my natural instincts and take a lot of very strong pain relief. It's not good but it's how things are.

Draining of knees never works for very long. I'd say a month was about par for the course. Did they give you a steroid injection last time after draining it? There is a limit on how often we can have them.

I'm sorry, I can't remember why you stopped the sulph or if it has been replaced with another DMARD. Certainly, if you have an inflammatory form of arthritis you need some kind of DMARD as the draining etc won't slow up the disease at all. Meanwhle, your GP could prescribe pain relief.

I agree it's very frustrating but there is little we can do other than wait. The NHS is, indeed, a service we all contribute towards but what we pay in comes nowhere near to paying for it. If you want speed you will have to go private but then you really will pay.

What medication are you taking?

silverfoxxxx

Not currently taking anything as been on a 4 month waiting list to see a nurse to look at my next dmard option, and that just makes it all seem pointless, appointments are so far apart it’s unreal, surely drain knee, start tablets would be the best option, or start tablets and then drain knee soon after, everything is months and months apart and doesn’t help the getting better process.

I did start down the private route, £250 got me moved up the nhs waiting list, same consultant that I was waiting to see anyway, was in next day for nhs knee clinic, so the fact they are busy but can fit you in a day later for £250 is absolutely disgusting.

jennand

I’m not sure I understand this silver fox. Are you saying that you were waiting for an nhs appointment, paid £250 and then were seen on the nhs next day? Who did you pay your £250 to?

silverfoxxxx

jennand wrote:

I’m not sure I understand this silver fox. Are you saying that you were waiting for an nhs appointment, paid £250 and then were seen on the nhs next day? Who did you pay your £250 to?

I went private, initial consultation was £250, it was the same consultant I was waiting to see on the nhs, she literally gave me an appointment the next day with the nhs at the knee clinic, knocked 10 weeks off my wait.

jennand

Ahh, I see. This was a situation that can happen. Only a consultant is able to override the nhs waiting list but obviously you have to get to the consultant first. Even a GP has to go directly through the consultant. I have heard the question many times. How come I can get to see a consultant but only if I pay? The nhs is complicated. Because of finance limits and sheer numbers of patients. A consultant is given X number of clinics per week and X number of hours in the operating theatre. Anything outside those hours is his/ hers time. So they work at the private clinics which sometimes can even be at the same hospital ( the consultant pays the hospital for the facilities). It is confusing and frustrating. I myself have paid private & I worked in the nhs for 42 years. Nevertheless , give me our system any day over the US system.

silverfoxxxx

Tbh I understand the waiting list issue, what I don’t get is the lack of reply to a simple email, well now 5 emails, from the secretary asking if I can put in an appointment request, I haven’t even got to the appointment stage yet, lol.

stickywicket

It's all a bit muddled, isn't it?

I wonder how much info the secretary is giving the consultant in the emails. If she doesn't give your reference number then he can't check when you last had one.

Personally, I'd go down the route of chasing more DMARDS which you'll need anyway. I'd ring the rheumatology helpline and speak to the rheumatology nurse.

dreamdaisy

I think the NHS would function more efficiently if it followed the private education model: teachers in the state system do not flit off every now and again to rake in the shekels doing a lesson or two in a private school.

I have seen my rheumatology consultant twice privately just to have an appointment that lasted longer than ten minutes. She was punctual too which never applies when she's in NHS mode: I always opt for 9am appointments and she often doesn't swan in until 9.20, then there's the coffee and chat with colleagues . . . As mere patients our time is no importance, no value and of no interest.

Welcome to the dreary world of NHS beaurocracy. The staff (especially in rheumatology) are inundated with patients and, unlike other departments who can actually discharge people from their care, once you're wrapped in the tentacles of that department you're there until you're not. When I began I had appointments every three months, the Helpline was answered by a human, I felt that people were interested. Now thanks to GPs being more informed, and an increase in population my department is snowed under as people are being referred quicker, starting the meds faster. I do all my medmin (medical administration) because I am the only one concerned about telling people what they need to know. For the hospital I am one in I don't-know-how-many-hundreds of rheumatology patients, I am not special and do not merit dedicated care. For someone new to it all the apparent lack of professional interest must be confusing as expectations of a service are naturally high. My hospital is a large teaching one in the East of England, if you're is a smaller city one or worse then things may well be slower. Keep badgering them, in the end they will be so tired of dealing with you you will get your way. Quite why they could not move you instantly to a different DMARD I do not know - that smacks of a system feeling the strain. DD

Maturecheese

I have every sympathy with your plight as I have the same problem with my knees (currently the right one is ballooned with no hope of aspiration) It seems it's a post code lottery with the NHS and as I live in S Wales I can tell you it's pretty bad around here.

Jennand (not having a go at you personally so please don't take offence) Re Health systems, why is it whenever people defend the NHS they always compare to the US system but rarely mention Germany or France etc. My brother lives in Germany ( for the last 45 years) and can honestly say their Health care system is miles better than ours. It is obvious to most of us that the NHS is on it's knees and something other than throwing money at it needs to change. (runs away ducking )

BettyMac

As others have said, Rheumatology Departments across the NHS are under resourced and failing to cope with the number of patients who require their services.

It must be very frustrating for the people who work in these departments. They were trained to aim for a high standard of patient care and underfunding prevents them from being able to give us this.

I too had enormous problems dealing with the NHS last year and had to resort to a couple of private appointments to move things on. I am lucky that I was in a position to do this - many of us are not.

Rheumatoid arthritis, when it is misbehaving, renders us exhausted and depressed - and in no condition to fight with NHS for what we need to improve things. It's Catch 22.

The only thing I can suggest is that anyone having issues communicating with hospital departments contacts PALS.

https://www.nhs.uk/common-health-questions/nhs-services-and-treatments/what-is-pals-patient-advice-and-liaison-service/

The downside of doing this is that you risk upsetting the people you really want to keep on your side - which is unfortunate because it's the system and lack of funding that's at fault, not the doctors and nurses.

Maturecheese

"it's the system and lack of funding that's at fault, not the doctors and nurses."

I agree and I shouldn't have really involved politics in my last post so I apologise. (Jennand)

silverfoxxxx

Haha, it just gets worse, just got home to a letter saying my end of December has had to be cancelled due to unforeseen circumstances, a further appointment will be made when available. Still no contact back from rheumatology regarding having my knee drained.

Saw my physio who was really concerned with the swelling and asked for a second opinion, conclusion was they would use their contacts to get me seen ASAP due to amount of swelling, outcome is a phone appointment in 3 weeks time, lol.

It seems I can’t get any answers, treatment or even actually talk to rheumatology no matter how hard I try. I’ve had 3 answer machines to speak to today suggesting I see my gp.

dreamdaisy

At least they know about you, after five years of being told it would sort itself out my left knee ended up 27" in circumference with solidified and new swelling. Orthopaedics removed it all then six months later it returned so rheumatology began to rethink . . . . DD