What happens when (NHS) NICE Guidelines NOT met?

[TheSpottedZebra]

I have been experiencing symptoms of rheumatoid arthritis and was urgently referred to rheumatology in mid Feb. The first available appointment is..mid September. I've tried to ask for sooner, or a cancellation but to no avail.

NICE guidelines say you should be referred by GP within 3 days if certain symptoms present( they are and I was), and should be started on treatment within 6 weeks, if diagnosed by rheumatologist.

I have been lucky so far with my health and have NO experience of referrals like this. What would be my next step to get this expedited? I'm in constant pain, my mobility and joints are getting worse by the week. It's pretty shit and im in a bit of despair/denial, really.

Yes, I know the NHS is in dire straits... but do I have any recourse to try to get a sooner appointment?

My dh is on a 2week bowel cancer wait and the next colonoscopy appointment is 26 weeks away. It’s shocking.

Cripes! What will he do?

No recourse i’m afraid. NICE guidance isn’t been followed a lot currently with additional waiting times. They just guidance.

Its worth contacting PALS and highlighting what the guidelines say.
Also you could try your MP I guess.
I'm sorry you're suffering.

They are guidance, not rules that need to be followed.

You can try PALS?

Hope it’s not cancer 🤷🏻‍♀️

As the others have said, it’s just guidance. Can you afford to see a rheumatologist privately? It’s what I used to do and then I would continue to see the same rheumatologist on the NHS but would bump up the queue for subsequent appointments.

And they cleverly say: you’ve met the guidance for she GP referral and after you’ve had your appointment with the rheumatologist, you’ll start your treatment, but there is no guidance for how long the waiting list of the rheumatologist should be.

Which area of the UK is this?

PALS and lawyers writing letters

South west. I work in the hospital so I’ve asked him to be put on the cancellation list. Last year he had a testicular lump and saw the gp in May, chased multiple times - hospital blamed gp and gp blamed hospital but he wasn’t seen until first week of October. Thankfully all clear but guy doing the scan saw the delay on the notes and was shocked.

I can afford an appointment or two, but certainly not scans/ continued appointments and treatments.

Is that how it works, that you can use private to jump the queue for diagnosis but then go back to NHS?

Thanks for all replies by the way. Even if it's bleak reading!

NHS England says patients should wait no more than six weeks for endoscopy tests (colonoscopy or flexi-sigmoidoscopy) that can diagnose bowel cancer, and no more than two weeks to see a specialist if they've been referred urgently by their GP for suspected bowel cancer.

Suggest you contact PALs urgently to look into your DH case

@TheSpottedZebra
i also suggest you contact PALs.
Did your GP do any tests that make rheumatoid arthritis likely eg raised CRP or a positive rheumatoid factor ?

If you can afford it go private, even for one or two appointments and at least you could get some idea of diagnosis and start on treatment.

If not, go back to your GP and they can contact Rheum and state your case again, and possibly start you on some treatment themselves, e.g. a steroid. Won't necessary make it quicker but it might help.

PALS will listen but they can't magic up appointments with Dr and nurses that don't exist

Back in the day private healthcare used to be fancy clinics and tea served in a proper cup rather than lovely NHS mugs... now though, it's more about queue jumping. I've seen lots of private patients put on the end of NHS lists with the same team, equipment and hospitals etc. Just... faster.

So yes, you can do tests and consultations privately and then ask GP to continue any care they've prescribed. Usually via a letter from the private consultant.

Yes, positive to both. Hence I was referred (with that info) as urgent! The blood tests were the next day, I was amazed!

When I last spoke to the rheumatology department, they said that couldn't do anything without a request from the GP to expedite. The GP surgery sent an expedition request and the rheumatology department said well we can't do anything anyway. September is the best they can do.

(Blood tests done by GP, i mean.)

That's so frustrating. Sounds like you've tried everything.

No recourse via NICE guidance.

It is very common for people to jump the queue by paying for a first appointment & diagnosis and then go into the nhs queue for further treatments. The consultant may also prescribe on the first appointment which GPs are usually happy to convert from a private prescription (pay full cost of drugs) to an NHS one.

It is an awful wait particularly as inflammatory arthritis can really damage joints. Would your gp do a trial of steroids whilst you wait for the OPA? Just to get treatment going?

Thank you for the sympathy! It's actually quite shit. Everything I read says early treatment is paramount to avoid(delay) disabling joint damage. And yet...

OK, so PALS tomorrow and an attempt at finding a private rheumatologist.

NICE guidelines mean absolutely nothing. That's from the coroner who investigated my dad's unnecessary death. They are just guidelines not rules.

Gosh, really sorry about your dad.