referral

[TheRedOnes]

Hi my GP sent an urgent referral to rheumatology for me. I had a letter telling me my referral was being reviewed and either rheumatology or gp would get back to me. Then the next bit said only to contact them if I hadn’t heard anything by 19th October. Is this a normal timescale for referrals as I’m really strutting manage every day things ? ☹️

[BK47]

I’m so sorry you’re struggling. But yes it is really hard to get appointments with rheumatology. I guess they are inundated with patients.

But do go back to your doctor as they may be able to give more help or pain relief.

It is awful struggling so please ask friends family or neighbours for help in the meantime x

Thinking of you 🤗

[KayHimm]

Hi TheRexOnes,

I imagine this is a very stressful time with your being ill and not having clarity about an urgent referral. It seems that what happens - and I don’t live in the UK but countries take these guidelines very seriously - is that the referring doctor makes their assessment and then the patient’s record is reviewed by the specialist. Sometimes the patient will go from routine to a higher level based on what the specialist sees. Your GP must have reason to have put you on the urgent list.

One of the reasons patients are put in the urgent category is so that they get on medication soon to prevent damage.

I feel confident if your case is being reviewed, you will be notified of a date by the date mentioned. You can always call your GP who will likely advocate for you.

Best of luck and keep us posted.

K

[DebbieJ6894]

I'd think it probably is these days. I've already waited 6 months for my rheumie referral - not urgent - and no sign of an appt. My mother in law needs a hip replacement and has been told to wait 18 months for her first appt ie consultation not op. I'd like to know where the billions we pay to the nhs go.

[OldTed60]

Hang in there you’re likely at the worst stage with all the symptoms and worry but no diagnosis or treatment yet.

I think it took me 4-8 months to be seen, following urgent referral, and that was 12 years ago now for sudden onset of inflammatory arthritis. I was given a steroid jab by GP to tide my over but it masked symptoms when I was seen so had to wait another 4 months to get diagnosed and put on methotrexate. Shortage of rheumatologists and the pandemic making things worse these days, both for new referrals and existing patients needing reviews. I’m so lucky I get seen or phoned 3 monthly these days - but I now have progressing scleroderma so maybe different to other long term rheumatology patients here.

Hopefully September will whizz by but you could try phoning the rheumatology desk in your hospital and asking if any cancellation list and explaining why. Sometimes being pushy is the only way to be heard unfortunately. I’d do this as many times as it takes if I were you. Best of luck

[Flow_47]

Yes it is I have been waiting months and have had my appointment changed 3 times from July now to October.

[KnitSewPurl]

welcome to he NHS waiting list system 🙄 yup ....my father in law was told initally that his op was 6 month then it went to 18months . they then phoned him and said we could not give you a date for your op. So he went private because he was in so much pain and he was glad he did😊.

my Oxford appointment was cancelled 3 times that i lost track which was even the correct date. I had to phone them to confirm with them.

i still waiting on my yearly rheumy appt but i really have not much hope in this.

my hubby saw his GP recently for his shoulder. GP said to get a referral for physio it takes at least 6months then they will refer him for ultrasound scan . Hubby said to him if he could do a referral letter so he could get it done privately. got his appoint in Sept to see consultant it would have been earlier but it clashes with my hospital appointment.

[Confused01]

Hi,

If your GP has referred you as a ‘rapid referral’ then this would mean being seen within 2 weeks of referral.

I would check with your GP surgery if you were referred as a rapid referral or not. If you were then contact your Rheumy Dept at the hospital. If not then likely to be a long wait.

You can also look on your Patient Access app online for your info, referrals, consultations etc. You need to sign up if not already.

X

[AimeeA]

I live in the US where we can self refer, but there are never enough rheumatologists and you can often wait 6 months to get in, or they just won't even agree to take on new patients.

Once you get your first appt. It is usually easier to schedule return appts.. but that first one is always hard to get in.

Just not enough rheumys to treat everyone needing one, especially because they also treat arthritis and there are lots of old folks now needing treatment for that!

[TheRedOnes]

Thanks everyone. I’ve had so many conflicting different symptoms the GP doesn’t know what else she can do apart from wait for rheumatology or go into A&E if I’m really bad ( last resort as I know how stretched A&E are and I know others are more sick than me and need seeing first). Trouble is I been pushed from pillar to post and fobbed off with “it’s expected when you are getting older” or “having children is tiring work “ or “full time caring does take its toll” or “ let’s check your iron levels “ etc etc. Sorry if this sounds particularly moany but I feel like I’m sat at a bus stop and none of the buses passing stop at my stop then one finally comes along it takes you all over the place and you get off back at the same bus stop ☹️

[michaellasmith Administrator]

Hi TheRedOnes

Welcome to the LUPUS UK Community Forum!

I am sorry to hear you are feeling lost regarding your recent referral and letters from Rheumatology, I have attached below some links that you might find useful to read before your first appointment:

This link will help you prepare for the appointment and has advice on what do to if you want a second opinion or to change doctor or consultants - lupusuk.org.uk/getting-the-...

Though you have not yet received your diagnosis, the following link has a lot of information, some regarding management of symptoms, diagnosis and general information - lupusuk.org.uk/publications/

If you would like more information about lupus, you can request or download our free information pack using the link below:

lupusuk.org.uk/contact-us/

You can also call the helpline for advice on 01708 731251, which is open Monday to Friday 9am until 5pm. I am happy for you to ask for me or email me directly at [e-mail].

Let me know how you get on,

Warm regards,

Michaella