31 WEEKS!!!!!!!!!????

Hi, sorry not been here much lately. Been in a lot of pain and discomfort with joints. When I saw my GP back in March and she made referral to rheumatologist she was hoping I'd be seen in 12-13 weeks, today is week 13 but Tuesday I thought I'd phone to see how far I was on the list and told very flamboyantly that I'm on week 12 and the current waiting time is 31 weeks :@!!! I'm 28 years old, I can't shave myself anymore, I struggle with brushing teeth, I can't hold my 6 week old son or play with my 4 year old daughter. I know I'm not the only one suffering or waiting it's just been and getting more difficult especially not knowing what is exactly going on. Anyway, rant over, I hope others on here are doing as well as can be :-) .

Ray

18 Replies

oldestnewest
  • My goodness that's not good! Can your GP phone rheumatologist and put pressure on to move you up the list? I really hope you get an appointment soon, good luck.

  • I'm seeing GP on 17th, I know she's not going to be impressed when I tell her what I've been told so hopefully she'll push it as she has ties within the hospital. Here's hoping lol

  • It's frustrating having to wait , hopefully you are moving in right direction - make a note of all your probelms how this illness is affecting you before you go, wishing you all the best ☀️☀️

  • There is a legal time requirement for first time appointments I think it's 12weeks as this is the window f time to start treatment so I would go see your GP it was my GP that informed me of that someone may be able to second that !

  • Hi, yeah everything I've read says the first 12 weeks are critical, my symptoms started in December but had to have blood tests and xrays before referral was made so I'm hoping it gets sorted sooner rather than later

  • Where are you, Ray?

    There are things you can try to speed up your referral, but what they are (and whether I know!) depends on country....

  • Cardiff

  • Hey,

    Im in the Cardiff area too, and also on that 31 week waiting list. I phone the appointments line quite often, they don't offer cancellation appointments, they are offered to those at the top of the list. Its hard being in constant paid and having no end in sight, just being offered stronger and stronger pain relief.

    I am trying to eat a bit better to see if I have any results from that, im constantly looking at what foods may help reduce inflammation, im currently sat at my desk with almonds and a green tea.

    I am going to the doctors tomorrow to see if they will write a letter to request a more urgent appointment, if that fails I will write to my gp stating how it is affecting my life,

    If you have any joy getting an earlier apt please let me know how you did it!

    Good Luck!

  • Yeah, I did wonder. Waiting lists are esp long in Wales at the mo. :( You might like to chat to Broomesa , who posted about exactly the same thing a couple of days ago. Here's the info I posted then... Hope it helps!

    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.

    There's more info about your options and rights here: nhsdirect.wales.nhs.uk/ency...

    Good luck! It's miserable waiting so long, and I hope you can manage to be seen sooner.

  • My aunt who lived in kenfig hill used to go to hospital for rheumatic diseases in bath. You shouldn't have to wait so long

  • That is so annoying. I'd definitely be getting back to GP and letting them know what is going on. Might also be worth reporting that to PALS at your local hospital and see if there is anything they can do - including allowing you to be seen at a different hospital.

    Just a point to note though - the target times only have to make sure that a certain percentage of people are seen within 18 weeks (85%?), not everyone. The other thing is if they suspect you have spondyloarthritis or any other form of inflammatory arthritis other than RA, then there are no targets and they can basically make their own rules.

  • There's a Community Health Council advocacy service in Wales, rather than PALS. This is yours Ray1988 , I think: wales.nhs.uk/sitesplus/897/...

  • Ray,

    Flow4 has made some very valid comments re this.

    I live in Mid Wales and there is no Welsh hospital anywhere near me to be referred to,so I suppose there is no option but to refer me to an English hospital.

    My GP has referred me to Oswestry in Shropshire for rheumatology,and Shrewsbury for Renal specialist.( have been dealing with these for some years) I also have to attend University Hospital in Cardiff for another specialist so I sometimes think we are the poor relations as far as facilities are concerned. Whilst the care I receive from these specialists is excellent and relatively short waiting times,it does mean a lot of travelling for me,but the standard of care I receive far outweighs this inconvenience.

    I have been told that NHS standards in Wales mirror that of England but we both know that's not true.

    You should do as Flow suggests and speak to GP to see if this can be expedited 31 weeks is just not acceptable- an awful lot can happen in that time and you need to be seen now.Dont know your circumstances but if you are in a position to travel maybe your GP could refer you to an English hospital if you're not getting any joy in Cardiff.

    National Insurance contributions cost the same whether you are in England or Wales so in my opinion we are entitled to the same standard of service ( but that's a rant for another time).

    I am so sorry that you are in such pain and discomfort and I sincerely hope that you get seen by a rheumatologist soon.

    Crusee

    XX

  • NI contributions are the same Crusee, and as I understand it, the budget is about the same per head. But the Welsh government has decided to keep free prescriptions (they're £8.40 per item in England) and that means there's less money for secondary services in hospitals... Basically, in both England and Wales, there isn't enough money being allocated to the NHS to preserve a free universal healthcare service, but they're 'rationing' differently to deal with that.

  • Thanks for reminding me about the free prescriptions - I only remembered about 3.30 this morning during another sleepless night.Just as well we don't pay, I would need a second mortgage to pay for what I have.

    But yes I agree with you ,there just isn't enough money spent on hospital services in either England or Wales but I have to say that the care I receive from mine is excellent.

    Crusee

  • Hi Ray

    I know the feeling of not being able to play with your children and how upsetting that can be.

    Could you spare £200 ish to maybe save yourself a lot of waiting? If so get a private referral, you will be seen in a few (2?) weeks and then can switch to their NHS list. Just make sure that whoever you choose (YOU choose) has an NHS list. Do some research on rheumatologists in your area first.

    I realise it is not an option for everyone, but what price pain and misery?

    Good luck

    Ade

  • Getting a referral to England would prove difficult as the consensus is we have rheumatologists who can treat locally and therefore will not fund to go out of area, sorry probably not what you want to hear. However, If you feel you are unable to bear your symptoms can you ask your GP for an urgent referral as this should be quicker. There is a lot of RA in Wales so hopefully you will be in good hands once you see someone. Very best of luck, I do understand you frustration with waiting.

  • Forgot to say Ade bell suggestion also a very good idea, but a she says do research.

You may also like...