NICE guidelines not being followed

[1234hello]

Hi all

I’m not an HCP so hope it’s ok to post here and perhaps pick your brains....

Can anyone give any thoughts as to what options/avenues (for appeal for example) a patient has if NICE guidelines are not being followed in relation their treatment pathway?

My understanding is that the answer is “not a lot” because the guidelines are not statutory.

If it’s relevant, the reason being given basically boils down to funding/responsibility.

Thanks in advance

You’re right in that nice guidelines dontnhave to be followed but a hospital is I believe supposed to justify why they’re not following them if they don’t. I used to write hospital guidelines and this is certainly what I did.

Could you try and get PALS to advocate for you?

Thanks for the response. I’m not actually a patient, so not sure if PALs would help.

I am doing some campaigning on behalf of a charity and am getting a bit fobbed off by the CCG. I do appreciate that funding is complex (read: a nightmare) with the NHS but this is something I feel strongly about and am trying to ascertain what next steps in the campaign might be.

Any further input from anyone very welcome. Thank you

Well I can offer a bit of a personal perspective then.

Some years ago I was having treatment for a rare condition at a London hospital, treatment was experimental so no nice guidelines but there was research backing it. CCG cut the service, they said on safety grounds, but I’m sure it was funding. 30 of us patients got together and got a barrister and legal aid and took the hospital to court. We had a proper day at the High Court in London and the judge made the hospital reinstate the service with strict conditions. We’ve since gone back to court to make them reopen the service for new patients as at first it was just reopened for existing ones.

So employing a solicitor/barrister is an option. We used Leigh Day and I can recommend them.

You'll need to provide more details OP. Too many variables otherwise
What is being refused and why?

“In competition with other priorities and demands” was my recent favourite reason given

The sad fact is there are a lot of NICE guidelines not being adhered to. IVF is a classic example. Most of the NHS does not fund what NICE say they should. A recent article came out on HSJ about how restricting to one cycle is putting women and babies at risk, because more ask for two embryos to be transferred as they are only offered one cycle and think it will improve their odds of remaining pregnant. The likelihood of multiple births is therefore higher and the rate of disabilities/death is a lot higher for multiples. If women were offered three cycles they would be more likely to only have one embryo transferred and thus risks reduced. That, and twin births cost about £15k and Singleton ones £5k. So strategically, restricting IVF isn't likely to be worthwhile.

It is impossible making decisions about what to fund and what not to fund. There simply didn't anywhere near enough money to fund everything NICE suggest.