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.

Will the private haematologist not write a letter explaining best treatment?

Yes I've got the letter and labs and "sorry, no". The GP has them

Does the private haematologist also work in the NHS?

Hi OP
I think you've had good advice from PP - try to get haematology referral for a consultation and take all the information about your condition.

The problem seems to be that there is not funding for what you need, but as PP have said, a consultant can apply for funding if a patient needs it. Just the same as the NHS doesn't routinely fund every medication that's available but that funding can be applied for on a named patient basis.

I feel for you. I have a condition that requires a specific treatment every few months. This wasn't available during the pandemic and I ended up off work for a prolonged period of time. I'm now told that the NHS may stop funding the procedure in the future. If this happens I may lose my job.

Irony is, I work for the NHS. I just want to stay well and keep providing a service to patients! So I really get what you are saying about just wanting the support to stay well and function.

I think you may need to prepare for the fact that you might not get this funded on the NHS.

This is all supposition, but I suspect that the genetic investigations you’ve had done wouldn’t be funded on the NHS either except possibly in very extreme circumstances. From a funding point of view for this specific treatment, when you reach their criteria they will treat you, but they won’t fund regular prevention or maintenance, likely on the basis that ad-hoc treatments when clinically needed do work out cheaper than regular preventative treatments when you quite possibly don’t need them. Even the monitoring and decision making time is factored into it so it’s not a case of just saying you won’t have it if not needed.

from your point of view it’s incredibly frustrating and nonsensical that such a simple treatment can drastically improve your quality of life and prevent other problems and I absolutely think you should push for your case to be reviewed at a funding level but I would caution you to be prepared for not succeeding and if you do, that it could be withdrawn on a later review.

Well they'll fund it as long as I become anemic (which I will), it's just a timing issue. I've put my formal complaint with PALS

Yes and that's what's so frustrating! I'd like treatment too, before I get so unwell that I have to go off work, but it seems that can't necessarily be offered.