Debs-

I can't help you navigate the NHS, but I'd recommend that you treat the BCIR and K-pouch as identical for your purposes. The BCIR is done in very few places, and I don't think there's any appreciable evidence that it's "better." If you are able to get to a place with a surgical team highly skilled at one of them, I'd treat that as a success.

Hi Debs

I'm pleased you've made a step closer to seeking a referral at St Marks.

Since my UC diagnosis;  I've been treated by or admitted into 6 or 7 different Hospitals, all within different areas and administered by different Health Authorities, and not one Consultant or Surgeon has ever been aware of who else I've visited or what treatment I've received from the different Hospitals, that is, unless they referred me or I told them.

Consultants and Surgeons have so many patients, it's difficult to keep up and each Hospital keeps their own, mainly, handwritten notes, which Consultants and Surgeons refer to and update during an appointment.

Such notes are only shared when Consultants or Surgeons from different Hospital choose to communicate with each other.

My Consultant who referred me to St Marks was not even aware I'd had my J pouch surgery when I visited last.

However, your Consultant and Surgeons administrative dept should add details of all consultations and treatments from different Hospitals to your notes and input such details to be viewed on screen but this only occurs when Hospitals choose to share data and in my experience, they vary rarely do.

It's more than likely that your current Surgeon will be none the wiser that you've sought a referral elsewhere; it will only appear within your notes if St Marks or any other Hospital has had reason to communicate with your current Surgeon, Consultant or Hospital, even then, your current surgeon will only be aware of such details when he/she actually reads your notes during your next consultation, probably some months after your referral appointment has already taken place.

You current Surgeon is not automatically notified of a consultations or treatment from a different Hospital.

Thanks guys for your very welcome advice. 

Claire - yes I am going to try get the referral to St Mark's and see how this goes - funding allowed ofcourse, so thanks. I do need an expert to take charge and get me out of this situation I have had to live in for so long, somehow.

Scott F - thanks about the BCIR K pouch thing. Had read a few things yesterday about it, doesn't seem easy either way, so will try with this Pouch thing first I think.

Strange - thanks again for your experience. It was the Gp who said they would have to inform St Marks Hospital who I see now, with explanation of what has been happening, once funding is approved, but yes I am sure by the time (hopefully) I see my Surgeon again, I will have seen St Marks. I must get the info off to the Gp today to get things moving. I can;t apparently choose the Surgeon to see, but I will once the Choose and Book is sent off, request to see - prof Phillips, I think you said? I would like to limit the amount of information the Gp says to St Marks, so they can see it fresh.

`I am just about to do a letter to the Fellow Surgeon I saw a few weeks back, to get in writing his comments, so there is no confusion or error in when I see my normal Surgeon again or anyone at St Mark's!.

Will keep in touch, and lets hope get the CCG to fund this!

Thanks Debs x

Yeah, your GP will have to inform St Marks of who you are under now and outline your condition and what you've  experienced but your current surgeon will only become aware of this if St Marks has reason to gather more information from your current surgeon.

Hospitals and Specialist prefer to gather all the necassary information from the patient once a referral is made, only the very basis of details are provided.

St Marks will request copies of your Hospital Records and results of all Test from you current Hospital via an administrative depts/records office and your current surgeon will not be informed.

Depending on how recent your test results are, St Marks will more than likely carry out all their own X rays and scans, although in my case, I only had X rays and scans at St Marks after my J pouch was created.

St Marks specialises in complex cases, especialy cases which have gone wrong elsewhere.

Debs, has you GP given you a reason as to why CCG funding must be applied for ?

It's my belief that an aplication for CCG funding is only required when the treatment or proceedure you're seeking is not normally available on the NHS.

Due to your current predicament and that you've had a " temporary" ileostomy for nearly six years; your the ideal patient for referral to St Marks

The procedures and specialism from St Marks which you require is all available on the NHS

I was initially referred to a Hospital closer to my home, which was within a different area and managed by a different Health Authority to that of my Consultant.

Again, there was never any mention of having to seek funding and I had not experienced any post surgery complications and I'd not had a UC flare up for many years.

Hi Strange

I have come up against this before with the CCG, if out of the area. Whether NHS or Private it seems. I was turned down over year and half ago for help with my Insomnia/Sleep issue, and was so desperate for help, and they turned me down!

That's how serious they take not sleeping as a health problem!

When I went to Docs, I asked if I could do the Choose and Book system, as apparently this is straightforward to do, but he said before this he must apply to the CCG for funding and approval(?!). as he also said it is out of the area. Actually, in my letter I have just done for him, I should have pointed it was NHS service, as perhaps he doesn't have to do the CCG, but going by before maybe they have to now ask for funding.

I hope this is going to be straightforward, altho I have an issue with the local CCG as I was unhappy they turned me down for the Sleep help, when I had been suffering for so many years, and struggling with withdrawals from sedatives! The Business Manager, who I should complain about, her attitude was terrible, on refusal it is only in exceptional circumstances funding is approved for! So if I will despair even more if I don't get this, as I also need to find an Endocrinologist on the NHS who takes Adrenal/Thyroid issues seriously! (ps. so if you or Claire know any please do let me know!). 

I also hope I can get to see Prof Phillips before end of August, but this will be optimistic I think. 6 Years, should have gone here long ago, I think I trust too easily, and hasn't got me anywhere!!

Thanks Debs x