What can I do if hospital rejected referral?

[Onlyrainbows]

have a very rare condition and spent a buckload on diagnostics. In a nutshell I don't digest iron nor absorb it l, and need IV iron regularly to prevent becoming anemic. The GI gets it, and I'm in an open referral to get iron once it hits 30. The GP sent a letter to hematology, and they rejected the referral (having no knowledge of the syndrome) and told me that if I really can't absorb it to get it done privately. Then why on earth do I pay taxes for? I have to change my whole life around my iron deficiency and I get neurological symptoms, which makes dangerous to others too (for example when I'm driving). What can I do next? There is no cure for this.

Nope that's not me, and that does sound scary! But basically I'm fighting to never have to reach that point.

It’s also worth knowing what the actual hospitals criteria for iron transfusion is, it may be that you’re not ticking enough boxes. When I worked in gastro (not a HCP) iron infusions were difficult to arrange for patients that needed them quite urgently. It was quite a high bar.

you may want to involve your CCG (or whatever they’re called now) alongside your MP.

Well I know the GI was able to bend the rules (same trust), so I think a consultant can definitely just order them

You could call haematology at rd&e yourself and ask why it was rejected? 01392 411 611
If you can get a reason rather than just a rejection, the GP might be able to solve it by sending more info.

But that’s because they know you and your case, it’s a huge ask for another another consultant to sign off on a procedure/prescription for a case they’re unfamiliar with and on paper isn’t ticking the boxes they need it to justify their decision.

I genuinely think your best bet is to get another referral requesting confirmation of your diagnosis (you can present the info you have then) and at the same time involve your MP/CCG.

This is what they said, they basically said they have no experience of my condition and I'm not anemic, so not willing to give IV iron.

Is the issue here process, as in you can’t just get refered for an infusion, but you need to be their patient?

The issue is that in order to get infusions, I need to be under the care of hematology, but hematology is refusing the referral. Unless of course, I always wait to become anemic, which is negligent at best.

OK, so the funding for infusions isn’t set up for your condition so you need the CCG to consider your case and agree your funding.

Be aware that they’re probably going to want evidence that oral iron does nothing for you if you haven’t already got it. if your GP is supportive of you and happy to issue blood forms for regular monitoring you can start that process now as pointless as it feels. Also if your iron levels don’t fall low enough for current criteria your symptom severity need to play a big part in your argument.

The referral management service is a middle man before it goes to the specialist. The GP won’t necessarily be resending the letter but re referring to include additional info to challenge the decision. Good luck, make sure you get in touch with PALS asap to help you on the way although they won’t be able to do much yet if the RMS is delivered outside the trust.

My iron levels drop to anemia (as it's been proven over the past 10+ years) I simply want to avoid it considering I have this for life. (And I don't think it's too much to ask).

It does read like you’ve just been refered for iron infusion though. Where as you should be potentially referred as patient with Irida who cannot take oral supplements.

Ahhhh good point. Let me check the letter that was sent to the hospital

Yeah the referral letters are all over the place.... And do mention "I'm keen to get an infusion" which of course I am!

I don't have anything useful to say, other than it's interesting.

I've been anaemic my whole life and iron supplements don't raise it, I took 6 months worth a few years ago and it actually went down. They've had GI procedures to look for problems and everyone is stumped. I've had blood work back at points before and the GP has phoned and asked me how I'm functioning with such low levels, she's genuinely baffled.

I've done a quick google of the syndrome and Christ there's not much info out there is there! I'm a researcher at a uni so will see if I can find anyone in the field...

Daisy you might have the syndrome, it's basically first diagnosed by process of elimination, but as I menstruate, I was sure they'd blame it on that (even though I have a light flow and no fibroids) so got the genetic testing done.

Reading that rejection I’m almost certain that has been written by a consultant. They are basically saying you don’t fit the criteria for IV iron within their service. I think it’s a very considered note, within health it is becoming less and less possible for the rules to flex, again hugely frustrating for patients and clinicians.

I think a referral to haematology in the first instance to be diagnosed (I know that is so frustrating) then you and the clinician would probably need to apply for exceptional funding for it.

But the referral (at least in theory) was to hematology (not for the iron infusion). I don't mind of they have to re-diagnose me as long as I'm on the right track. At the very least I still have 40 years ahead having to live with it.

Contact the Patient Advice & Liaison Service (PALS) at the hospital who rejected your referral. They will look into it for you. They usually work really quickly too.

Yes I know what you mean but by talking about IV infusions you GP has possibly not put enough of the correct information in. They need to refer along the lines of ….. is chronically anaemia with no obvious cause…..

Regardless of this (and I think it would be a good idea to get an NHS diagnosis) if the service is not commissioned to provide it to a particular group they can’t no matter how deserving.

In my world there is funding for implants for patients who have lost teeth due to treatment for head and neck cancer, so if someone tried to get referred to have an implant after trauma that wouldn’t be accepted, even if they lost teeth through no fault of their own and were significantly affected by it and unable to eat their usual diet. To draw a very broad similarity to you (I know it’s not the same but I’m trying to explain how funding in the NHS works) they would be offered a plastic denture (in your case oral iron) from the NHS and if they wished an implant (in your case IV infusion) advised to seek this privately.

There are ways round this in applying for exceptional funding but you would have to get an initial diagnosis from the NHS and an agreement from the consultant/department that a particular treatment would benefit you and be cost effective.

In my world again we get lots of referrals for things primary care clinicians know are not available or the patient doesn’t meet the criteria and then it’s the tertiary care people are the bad cop.

I do think there is a way for you to get round this but there is a long drawn out process to get to the point you want to be. Neither PALS nor your MP will have any sway to “make” the hospital provide that care if it’s not commissioned.

Sorry super long post! I hope you get the result you want eventually (and that the very long post makes sense!)

Yes they asked a lot of period related questions but mine is minimal.

I've had an infusion (at RD&E, weirdly) and it only held for about 4 weeks until it all disappeared again.

I'm going to investigate, thank you!

But they'll give the infusions eventually (just like they always have to) just one path is pre-empitve and the other one waits until I develop anemia, which I will. In only takes about 6 weeks from a ferritin of 30 to actual anemia.

So it's a false economy at the cost of my wellbeing. And they have clinical records of 10+ years to back it up (all under the NHS).

I think you will need to get case specific approval from the CCG panel (or whatever’s replaced it), with the support of your supportive consultant who understands the condition.

@Onlyrainbows Its so frustrating, I work in the NHS and always will, but sometimes it can make you want to scream. To be fair most services are set up to fit the majority of people who need them and because of that when someone doesn’t fit that service exactly it becomes really tricky.
There are definitely pros and cons to having protocols and criteria for treatments, it removes the fact the consultants next door neighbour can get bumped to the top of a waiting list but for those patients who need that flexibility it becomes harder.

I would go down the path of trying to get a CCG to approve the funding and that is where PALS and you MP can help in keeping that process moving.

Good luck