Referral in the UK

[Charlotte.]

Hi everyone,

Can I ask my GP for a referral to another hospital when I think they have more experience with elemental diet and dietary treatment in Crohn's?
If yes, do I still have the chance to see my local IBD team in between the visits?

 

[Kat123]

You have the right to be treated wherever you like, so yes, you can ask your GP to refer you to another hospital either for a second opinion or for ongoing treatment.

The referral may take a while to come through, so I don't see why you wouldn't be able to continue seeing your current team whilst you are waiting for it. Maybe mention to your GP that is a concern.

I could be wrong, but I don't think you would be able to be under two consultants at once, so going to the more specialist hospital for the dietary treatment and your local hospital for other treatment. Maybe you could if, for instance, your current consultant had referred you to the other hospital for more specialist advice. You could ask them if they'd be willing/able to do that?

 

[Charlotte.]

Thank you so much Kat! That's very helpful information for me.

 

[Kat123]

good luck with it x

 

[littlemissh]

Yes you can ask for a referral to another hospital. Some have to be via your hospital doctor and some your GP can refer to (depends if it is a secondary or tertiary referral centre).

It is possible to be seen by both hospitals at the same time. I am seen by my local team and also at St Marks. My local consultant is the one who requested this arrangement.
I am lucky in that my dietician is happy to take advice from other hospitals regarding elemental diet and other things. She is now the resident expert.
What hospital do you want to be seen at? Can your local dietician speak with the team you are wanting to see and sort it out for you?

 

[Charlotte.]

Thank you littlemissh! St. Marks has very high reputation for IBD, don't they? I was warned that they might be too much into surgery instead of trying different approaches. Are you happy with St. Marks?
I would like to be seen at Addenbrooke's, as I am on elemental and failed the standard LOFFLEX in the past, they seem to have wide knowledge on elimination diets.

 

[littlemissh]

I have been seen at Addenbrookes who initially suggested the elemental diet, but also Humira . My dietician liaises with the dietetic team there as it is our nearest tertiary referral centre. I have found St Marks to be a bit test obsessed. Aisla Hart was really good and listened to what I wanted etc but subsequently her team member was more assertive. It's a bit of a trek for me and they run really late, but I go to keep my local consultant happy because he wanted their opinion as I am complicated.

 

[Charlotte.]

Thank you littlemissh!
I really have to have a talk with my local IBD team here. I'm so disappointed, the doctor here could not determine three fissures (that finally have been found yesterday at Cambridge, private appointment), and I no longer want to be under their "care", apart from blood tests for potentially azathioprine, as they have to be done so regularly.
My local team denied to refer me to Addenbrooke's because they don't see a reason for it, now, I see a reason, as they don't seem to have enough knowledge here and did not take my pain seriously as well.
Has someone been in a similar situation?
I would like to be referred to Addenbrooke's, but keep the local nurse for blood tests etc.

 

[Kat123]

My GP prescribes and monitors bloods for Azathioprine, and I send the blood results to the IBD nurses to monitor for Humira. It's a bit convoluted but generally works ok.

 

[littlemissh]

Where are you seen currently? Is addenbrookes local to you? You may be able to be referred there by your GP if you explain that you have had fissures missed. Your GP nurse may do your bloods as long as Addenbrookes continue to follow up and provide shared care arrangements for your immunosuppressants.
I believe the wait for NHS appts at Addenbrookes is quite long in between follow ups. I was there as an inpatient but haven't been seen in the opd dept. Tests done there later were followed up by my local team. I think I am quite lucky with the team approach my local hospital suggest….though it can get tiresome going to different places.

 

[Charlotte.]

Thank you Kat123 and littlemissh. I am seen by a practitioner from Addenbrooke's now fortunately.