I can’t get a rheumatoid referral

[Blue1111]

I’m new here and wonder if anyone knows how I can get treatment. I fall under nhs Wales, my GP tells me rheumatology are not accepting referrals as the waiting list is over a year. I am in severe pain daily with restrictive movement. I feel totally abandoned as this has been going on for years, but what can I do to get the treatment I need? I also have other autoimmune diseases, Graves’ disease and uveitis. Thank you.

[allanah]

Unbelievable. Personally I would go to my MP. That is ridiculous . It doesn't meet any of the RA protocols for the NHS. Xx

[Mmrr]

Access to free treatment at the point of need is a universal right under the NHS. No individual GP can deny you that. I would revisit the GP to raise your concern and check the 'specific' facts surrounding your lack of referral. Is your GP saying there are no rheumatology referrals in Wales ? Really ?

[sjhewitt42]

That’s ridiculous particularly as it needs treating early as possible to prolong the life of your joints. Do you have a citizens advice bureau or a patient complaints commission at the doctors practice where you can raise a grievance. Hope you get it sorted soon. No one should have to suffer without access to correct medical treatment. Hope you get it sorted Sarah x

[Fruitandnutcase in reply to sjhewitt42]

Exactly. When I saw my GP about my painful hands he did a fast track referral and when I said ‘but my fingers aren’t distirted’. He said if you are dealt with early enough you shouldn’t see that. I realise from what others have said - like their GPs have said things like ‘just take a paracetamol’ etc that I was exceptionally lucky to be treated with such care.

I would do as allanah says and speak to my MP. And a cross border referral is a good idea too. That attitude is shocking, I’ve never heard anything like it. Could you get help from the consultant you see for your Graves or uveitis?

[NeonkittyUK in reply to Fruitandnutcase]

I was going to say exactly the same as you. The endocrinologist should be able to write to the rheumatology consultants and say how detrimental this will be to you if you don't get your RA under control and medication started etc. A year is just unimaginable, so don't give up and if you can do try travel to another region and make it known to your MP as Alannah says as it just isn't on. In the time they propose that you wait your joints could have suffered a lot of damage and you could be very hard to treat if you've gone so far down with the RA, so please don't be patient and sit this out nicely. It is hard fighting for what you should be given with no obstacles (been there and so have many of us here) so please ensure you get what you should be entitled to. Good luck and let us know how you get on and a gentle hug to you. x

[helixhelix]

I think you may have the right to request a cross-border referral to rheumatology services in England. I think you need to investigate options like this. Is there the equivalent of a citizen's advice service?

[Theziggy]

That is scandalous. My GP says an ordinary rheumatology appointment in Northern Ireland has a waiting time of 3 years. He managed to get me an urgent appointment which only took 2 months. I would keep at them or go to another Doctor.

[Hidden]

In 2011 I begged and begged for an appointment but was also left to suffer. In the end I paid privately and saw the rheumatologist. He examined me and put me straight on his nhs list. I know it's not right to have to do this and it was money I didn't really have at the time but it was worth it to finally get treated.

I thought things had changed now but clearly not. I hope you get some help soon x

[oldtimer]

Are you in Aneurin Bevan Health Board? Two rheumatologists left last year and have not been replaced. There needs to be a fuss made if they are refusing referrals - and a mechanism for cross area referrals. Please complain to the Health Board.

[Blue1111 in reply to oldtimer]

Wrexham Maelor is the Hospital I would fall under, health board is Betsi Cadwaladr... last summer a GP advised the consultant for rheumatology sadly passed away, wether finding a replacement has caused further delays isn’t know. But I’ve also been waiting for Pain Management and CMATS appointments after my GP referred me at least 3/4 months ago.

[nomoreheels]

Hiya Blue111, welcome though I'm sorry your first post is such a difficult one for you. This isn't acceptable as you're aware. Can I ask is this across Wales or limited to the nearest hospital for you? Are you prepared to travel if a referral was to be to a Rheumy in a hospital further away? I ask because according to NHS Wales the key objectives are to ensure that all referrals by Primary Care to Specialists (not just Rheumatology) are that all patients referred by primary care will receive their treatment within 26 weeks or less for the majority of patients. All patients whose care is too complex to be undertaken within 26 weeks or those who choose to wait longer receive their definitive treatment within maximum of 36 weeks. If it's not possible to be seen within maximum waiting time the local Health Board that commissions your treatment can investigate & may be able to offer you suitable alternative hospitals or community clinics that may be able to see or treat you more quickly. However, you will need to contact the original hospital, clinic or Health Board first before alternatives can be investigated for you. Your Health Board can take reasonable steps to meet your request. For a whole department to close the doors to patients does seem surprising, whether there's a backlog of a year or not surely the NHS can't do that? It's a rhetorical question by the way.

So you may need to be proactive in this I'm afraid. Doubtless the lack of NHS resources in Rheumatology across Wales is lacking but a year's wait as you know is just not acceptable given the sooner we start treatment the more likely it is we have a better prognosis.

If it was me I'd initially ask for confirmation from your GP that no referrals being accepted is true of all Rheumatology Departments in Wales or limited to your local hospital only. An option could be asking to be added to a cancellation list if you're in a position to or prepared to be seen at short notice. As helix has said if it's an option would you be prepared to be seen at a hospital in England? As has been mentioned if this can't be resolved under the NHS are you in a financial position to be seen privately initially? If so I'd advise the one you choose also runs an NHS clinic so that transfer is easy to be seen once you've received your diagnosis.

I hope you resolve this, I feel for you as most of us were referred far sooner & can't imagine myself in the pain I was in being faced with the situation you find yourself in. In the meantime, if you're not prescribed anything, do ask if your GP will prescribed appropriate pain relief, NSAID or even a course of steroids to help ease the pain & inflammation you'll have. Take care & keep us updated.

[Frankiefocus]

Hi I got the same responce from my Gp about my RA ( I live in Northern Ireland) and had to go to a private clinic and pay £200 to see a consultant rhuematologist. She diagnosed my RA and gave me steriod shots and started me on MTX. This was the best 200 quid I have ever spent as it got me sorted and on the NHS without waiting a year to be seen. I now go once a month to my local hospital to see the NHS rhuemy for free.

[emmab-NRAS]

Hi Blue1111,

We are really concerned to hear this, so if you have time, would you be able to call the Helpline with more details so we can try and help you get this sorted, the number is 0800 298 7650 (Freephone Helpline).

I am also part of the policy team, and we are very keen to help you, so if you need anything from us, feel free to contact me on [e-mail], or call 01628 823 524 and ask for Emma.

Thank you

[AgedCrone]

If you read Wendy39's posts on the Lupus site you will see the trouble she has had with Rheumatolog appointments & trying to get a referral through NHS Wales for treatment for RA/Lupus. You might gain some tips from her journey through officialdom. As your GP has told you rheumatology appointments seemingly throughout most areas in Wales are very hard to come by.

Have you approached your area health authority & asked if they can advise where you might find a rheumatologist in a different area from where you live?

If you could afford it maybe your GP would refer you for a Private consultation out of area to England?

Then at least if the rheumatologist diagnosed & prescribed for you - your GP could write the prescriptions....I don't know if that is possible, but it's worth asking. Has your GP prescribed anything for you...if not maybe you could ask him to at least give you some suitable pain relief?

Google NHS WALES to find out who you should contact at the health authority to make an official complaint.........& to ask when they will be employing more rheumatologists. The more people who bring the situation to NHS Wales attention the better.

From what one reads NHS Wales is in a very bad way financially & it looks as if you will have to start banging on doors to get a rheumatology appointment.

I wish you luck....let us know how you get on.......I certainly hope you get an appointment one way or another very soon.

.

[rab1874]

What a terrible situation to be in and no fault off your own, plus you need treatment to stop the damage being done to your joints, hopefully NRAS can help and I’d also get in touch with your MP because this shouldn’t be happening xxx

[dippyd09]

Ridiculous! No one should be left high and dry. Is there another GP in your practice? Maybe worth giving them a visit. Obviously it’s far better to be diagnosed and treated sooner rather than later. Much better to be on the correct treatment as soon as possible. I really hope you get it sorted quickly.

[Hidden]

I can’t believe I’m reading this. Waiting over a year to see a rheumatologist is ridiculous and meanwhile you are suffering and possibly getting joint damage which could be avoided with early treatment. I really hope you are able to get an appointment somewhere else soon. I’m so sorry this is happening to you ( and probably alot of other people too) x

[VeronicaF]

I live in wales, I waited 2 weeks to see a rheumatologist after GP contacted them.

Now 20 years ago I waited 2 years to see a rheumatologist,which back then 20 years ago was a normal time to wait and turned out to be a waste of time for me then

so someones not telling you right? or not seeing you as urgent

sometimes Gp's can palm you off because your cost them money ,check that's not whats going on

and

go to A and E

[Gridster1]

I am base in south wales and i was refered by GP August 17 and was seen in March 18 and again in December 18 and thats when they put me on Hydroxyclorquine, this meant i went 16 months before i got treated

[Liz018]

It happened to me but I didn’t know what to do I had bloods at doctors and was in highest levels for RHEM got on a list the list was over a year long . I was so bad my knee was swollen arm and hands really bad pain awful . I went to see a private consultant in bupa I picked one that worked for NHS also . Had to pay £250 for 15 mins and she immediately put me on her diary for NHS 4 weeks later . She put me on after her clinic had finished so now I’m on the meds and had all bloods scans etc . Waiting for follow up . I was so bad I nearly went to A& E I thought I had bone cancer or something really bad . It’s awful situation . Hope you get help soon .

[Angels54]

You need to really push for this , if you get worse go to the hospital , I waited 4 month if I had the money I would of gone private .

Good luck

[Phoenix51]

Hello,,sorry i realise that I am replying to an ‘old’ post but just wondered Blue1111 how your journey progressed, I too live in NW Wales and have had same difficulty with rheumatology... just wondered if you had a positive outcome following the advice of community members?