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.

So who has been administering the Iron infusions so far ?

What is the condition and who had been providing treatment so far?

Haematology have no understanding of it? What is it?

Email your MP. This is what they are for.

Surely your GI consultant needs to talk to Heamotology team, it's not for you to sort out. Who is presntly organising and supplying the infusions? presumably the GI team? Why do heamotology need to be involved?

Does the condition come under a specialism at the hospital? Can the GP refer toy to them, and then they prescribe the infusion? You'd then have regular blood tests either at the hospital, or at the GP on behalf of the specialist dept at the hospital, to monitor and prescribe again when necessary.

I used to have to have iron infusions for Colitis, I'd have bloods done regularly at the GP for the attention of the Gastro dept at the hospital (all GP bloods go to that hosp to be analysed, so all results on hosp system) then if it was too low gastro would call me and tell me to come in for an infusion. GP never sent me for one, if that makes sense.

The hospital!!! But they had normally waited until I became anemic (until I was seen by the GI last year). The NHS GI even agreed that that was a stupid way to go considering I'll always need them, so he agrees to give them to me as long as my Ferritin dropped to 30 and not wait to be anemic. Because it has such an impact to my day to day life (it's called IRIDA syndrome and there's only 200 diagnosed cases, but it's thought to be under-diagnosed) I went to get it diagnosed privately, so that's how I got to the bottom of it.

I was only sent to gastroenterology to see if I was bleeding internally, what I have is a hematological condition.

I need the same but can't get infusions at all, private is £265 for tests and then £1000 for infusion every three months.
I haven't even got GI referral yet just neuro.
it has massive impact but they are so reluctant, no advice but I feel your pain.
(I can't drive because of it either)

How was it diagnosed and can you provide the information to be sent with the referral?

it may be that the haematologists (or gastro if that’s where your GP tries to refer you to next) will use that information to confirm a diagnosis or use it as a starting point for their own investigations to diagnose, but I have known consultants to be very wary of private diagnoses if they’ve been made somewhere/by someone not credible.

it’s probably worth investigating how much iron infusions are privately because the NHS is often reluctant to go straight to iron infusions.

My husband is opposite and retains iron. Ironically.gives the same symptoms as anaemia. NHS have done zero

I'm wondering if it's a 'computer says no' situation because the GI person has said for you to be medicated for something that doesn't come under GI? So the hospital would need haematology to prescribe for a haematological condition?

Has the GI / private place referred you to haematology for ongoing treatment for IRIDA (not just for the iron)?

Cross posted - I think you’re going to have to be referred for a haematology consult rather than straight for infusions.

It was diagnosed after 10 years of iron deficiency anemia and several infusions. Up to May this year, I had almost everything checked apart for the genetic marker and fibroids. So I got both done. The genetic marker test on its own was £2k (it had to be sent to the US, but I have the whole set of paperwork). The GP accepted it, in fact the genetic doctors received and discussed it between them and decided that hematology was the best department for me.

I haven't spoken to the GI (just left a voice message today). The private hematologist said I needed to convince them to get regular infusions and that my other best case was to start asking researchers of they were interested in my case (because it's so rare).

The GP receptionist think it was a secretary who read it, rather than a doctor and that's why it for rejected, so they'll send a second letter.

I think the GP probably needs to refer you to haematology to be an ongoing patient of theirs, rather than just a referral for iron each time you need it.

The hematology department rejected the referral to be under their care ;(

Again, email your MP. This is what they are for.

When you have issues with policy which negatively impact you and there isnt an obvious way round, then involve your MP.

Who decided haematology was the right dept? Was it the American doctors? It might be that its not the right dept in your local hosp?

I'll try the MP if no luck with PALS / GP / GI. I'm genuinely desperate but don't want to cause extra work UNLESS you'd think it would be worth it at this stage?

The genetic doctors at Devon Royal hospital decided that hematology was the best choice and not them.

Genuinely doubt this unless it was rejected for glaring administrative reasons, I’ve never known a referral be actioned by anyone other than a qualified doctor or nurse if addressed to a nurse.

I would ensure your GP sends all the paperwork available with the referral, consultants are often quite enthused with more unusual cases.

It's just written by the "Referral Management Service"

Are you the poster whose Hb dropped to 5 and your GP had to drive to the hospital to beg them to give you blood and they said no because GI was away so you went to A&E yourself and got transfused?