RA treatment and the postcode lottery.

[pinksugarmouse]

Some conditions such as Cancer have national waiting times and minimum expectations for treatment, and rightly so. Others like mental health and RA seem to be a real postcode lottery.

At my hospital I haven't had x-rays taken for years until I complained and they begrudgingly took them of my feet, hands and knees. Not my spine even though it has a progressive curvature. I can't access hydrotherapy even though it worked brilliantly for me as a child and the one time I was offered Physiotherapy as an adult the one I saw said 'I don't know a lot about rheumatoid arthritis I will have to read up on it for next time!' My consultant has been off sick for over a year so I see someone different every time. They don't show any real interest in me. Just prod my knees, don't check any other joints and seem really harassed if I want to ask about anything. The choice of drugs seem to be that's the one we are putting you on take it or leave it.

Is it this bad all over the country or is my NHS trust exceptionally blasé about RA?

[sylvi]

Take someone with you when you go next time so they can address anything you miss out., My hubby always comes with me and puts his tuppenworth in if he thinks i have missed anything. Also if your not getting any help ask to be sent to another consultant.xxxx

[Ailsa-NRAS Partner NRAS]

Hi Pinksugarmouse

It's worth being aware that there are NICE Guidelines for RA - CG79 (you can Google it and download to have a look) and there is also a NICE Quality Standard (QS33) which summarises 7 key quality standards for the treatment of RA (with ref to CG79) - I contributed to both and whilst these are not mandatory they are best standards which all rheumatology teams should be working towards if not currently achieving. We also have a really good booklet called RAise it which includes useful stuff to raise when you have your clinic appointment. I hope this is helpful and as Sylvi mentions below, take someone with you next time who can support and ask relevant questions. Sadly care is very varied around the UK and this is something we are constantly addressing as an organisation.

BW

Ailsa

[pinksugarmouse in reply to Ailsa-NRAS]

Thank you I will have a look at it. If my treatment falls well below these standards I will be asking (in writing) why that is. I have tried to contact my local PALS but they never get back to me so I gave up. I think it's time I put something in writing.

[Caspiana]

Hello. Not having X-Rays done for years is rather shocking to say the least. I am sorry you're made to feel the way you do when you go to the hospital. I wonder if it is the same all over the country? I don't live in the U.K.cos I have no idea. But my first thought was maybe a change of hospital if that is at all feasible.

At any rate, no one should ever be made to feel uneasy about trying to feel better.

Gentle hugs.

Cas xx 🌈

[lornaisobel]

I think its all a bit hit and miss - you could try and put in a complaint to ?? I'm thinking of moving but terrified that I won't get the support/help/medication I need at new hospital/Drs. Advice from sylvi and NRAS sound good - good luck xx

[pinksugarmouse]

Thank you. My partner always attends my appointments with me but I don't think he feels able to 'disagree' or even question the consultant. To be honest it's like being on a conveyer belt. I wait again to see the locum or whoever is available that day. They look at my blood results and say they are okay. I tell them AGAIN that I am sereo negative. They look straight through me and ignore me. They ask to see my knees, poke and prod them until they hurt a heck of a lot more than they did before and then say 'we will see you in six months.' And that's it. No 'how are you feeling?' or 'do you have any questions?'

If I do try and ask anything I get the brush off. I just get a general feeling of 'will you go already I have spent five minuets with you now go away and let me have my cup of tea in peace.'

I asked to be transferred to another consultant because I haven't seen mine for two years, but I was told that of the three consultants two are off long-term sick and one is on maternity leave. So the lack of interest or consistency of care is an ongoing problem. I think I am going to have to insist on going to another hospital.

[earthwitch]

I can slightly understand about the xrays, as many doctors now are really strongly trying to limit the number of xrays you have - as the radiation is cumulative over your lifetime. I know I'd prefer to avoid xrays and save up my radiation "allowance" for if I ever have some kind of serious illness that needs a CT scan and where nothing else will be as good. I think some doctors are happy enough to use xrays for diagnosis, but not as a way of following up.

As far as how often you are seen, I have never been seen more often than 8 months, and on at least two occasions have had to wait nearly two years for follow up - and that is with continuing active disease. Mine is AS though, rather than RA, and unlike RA, there aren't any NICE guidelines or targets for how AS is followed up and treated (only the antitnf guidelines)

[pinksugarmouse in reply to earthwitch]

I was advised that all people with active RA should have x-rays in affected joints every two years. I consider my RA to be a serious illness. I am quite concerned about 33years of cumulative damage. As I am sereo negative x-rays are one of the few ways in which the changes in my body can be monitored.

The consultant when asked about x-rays admitted that I should have been having them every two years. It just seemed no-one had bothered to send me for them.

As for limiting them, no decision was given as to why the joints x-rayed were chosen and others not. For example I have never had RA in my left foot and that was x-rayed whereas my spine and jaw which have damage from previous and current flare-ups were not.

I think how often I am seen every six months is about right considering my condition, it's intensity and the length of time it has been causing damage. I don't think more frequent visits are needed. I would just like them to be a bit more productive.

I think my treatment has worsened as a direct result of having no actual consultant who isn't off sick. So after some thought I am going to write and ask to be referred to another consultant at another hospital.