I am thinking about moving to the Uk and I cannot find much information on the internet about doctors who are familiar with the j pouch. I would appreciate any information anyone have for me please.
i have also recently moved to the UK and was given by my specialist in Belgium the name of Prof. Alisa Hart who works in St Mark hospital which is close to Harrow, London. I am to meet her in the next two weeks and I have been told she is one of the most expert on Jpouch and related problems. Hope so!!
Hi, just wanted to give you some sort of reply since nonen rise has picked this up.
The medical system here in the UK is different to what you are used to on the US. It can be very slow to get an appointment, unless you pay and go private, the level of care either way is very high at the important bits, but a bit shabby elsewhere (think a wait in weeks for results of cat scan or MRI. You might never be told the results of blood tests unless you specifically ask). And you will likely have the same surgeon whether you pay privately or use the NHS (national health service).
Usually you get referred to a hospital from a local doctor. The nurses will justkeep an eye on you and give the usual advice regarding diet and meds etc, at a predefined period, they will arrange for you to see the consultant to get scoped etc and for any operations you are referred to a surgeon. You can elect for a second opinion, but in my experience that is mostly a paper exercise.
Sometimes I read experiences on this forum and wonder if the big US doctors are as good as they are made out to be tbh.. In the UK you don't get doctors saying about being the best at something, there's no advertising or anything like that, but that doesn't mean the standard is not high, it's just about patients rather than customers.
If you have a really complicated condition of some sort you can be referred to St Marks hospital, which is as good (or bit better) than any other specialist clinic in the world.
So in summary, the care is perhaps not as polished as you would get in the States, but the outcomes are at least as good. If you need a lot of care St Marks is our flagship bowel specialist hospital. Personally I had mine done at a local hospital and it went as well as it possibly could have (I was home in 3 days)
Incidentally, I'm not really one to go to the doctors a lot, but Im yet to meet a doctor (or a nurse actually) that didn't know what a j-pouch was in the UK. Maybe I've been lucky?
I have heard about St Marks here in the USA...now I see two people on this site who have referred to it now so that is good. I have yet to see my doctor at the Cleveland Clinic to ask him for a doctor also but now I have some reference to a hospital to tell him about. I will pay the extra for the private medical service but will get that figured out once I get there. Many people know what a j pouch is here but ran into a lot that do not. Many pretend to know until I know they do not understand and I have to explain...no it is not a bag on the outside of my body lol It is a little scary relocating with something that not tons of people have but after having a j pouch since 1997 I have learned to live a pretty normal life. Thank you both for the advice.
Hi, I’d just like to add to what Bobish has already advised.
we are extremely fortunate in the UK that all our healthcare is free at point of treatment (everyone who is employed pays a National Insurance contribution which goes towards paying for NHS services), this is a very small percentage of your gross salary) however even if you do not work everyone who lives in the UK is entitled to “free” healthcare. However - there are other huge differences.
Mad Bobish states, we usually do not get to choose which hospital or specialist we get to see. There probably is an online site of all relevant surgeons, however patients do not make the decision- it’s usually the GP who refers their patient to the relevant hospital for that particular town and the patient would then (eventually) receive a letter giving a date for an outpatient appointment and at that time you would probably meet the surgeon (or a member of their team) most large towns have their own hospital which covers all the usual roles you’d expect, however if the patients condition is more rare or complicated or needs specialist treatment - eg specialist oncology the patient will be referred to that hospital. Where you are referred to in that instance solely depends on where the local hospital is located. An example is - both my brother and I have FAP. I live in Dumfries (South West Scotland) and my surgery was performed at Glasgow Royal Infirmary. My brother lives in Ayr (approx 70 miles from me) and he had surgery at Gartnaval Hospital also in the Glasgow area. Most patients from my home town who have cancer and require radiotherapy go to a hospital in Edinburgh. These are only a few tiny examples. Personally I would never dream of suggesting a particular surgeon to my GP - although you probably can - I just have always been guided by then, trusting they know what they’re doing. Obviously when you are used to paying for the privilege I can see you would be doing research into the best surgeons etc.
There is a slight difference to prescriptions in Scotland as well as we do not have to pay a single penny for any medication prescribed by a GP. I think Wales is free too / though I may be mistaken. In England you generally have to pay for each item ( I don't know the current charge - maybe around £11 per item - forgive me if I’m wrong) however certain medical conditions make you exempt from charges, eg Diabetes, having an ostomy - there may be a few others. You can also buy a prepaid certificate either quarterly, 6 monthly or annually and that covers for unlimited prescriptions which can be a huge saving if you need a lot of different medications.
I hope I’ve not gone too far off topic, you may - or may not find my post interesting!
Good luck for the future. X
Edit - I also meant to say that as Bobish also stated we are not furnished with in depth information on our medical issues. For example if you have been seen in A&E. and are seen and discharged I don’t think you get any paperwork stating what treatment was given. Even if you have been an inpatient for weeks, on discharge you will be given 1 A4 sheet of paper with a few fields completed stating your personal information, date of admission and discharge, who your consultant was, very general diagnosis and any meds prescribed and whether or not you’ll be followed up in outpatients at a later date. A lot of the time we are sort of kept in the dark. Obviously if something serious is diagnosed the NHS will keep a close eye on you, however generally we don’t get to hear anything else. My opinion has always been “no news is good news” ! This may shock you and you may think I me very naive, however this way I’ve nothing to dwell on and can just stick it away at the back of my mind and get on with life. Knowing me, if I had all the minute details, I’d get fixated on them and worry myself sick - even if there wasn’t much to worry about!
I'm UK citizen, have been all my life and other than repeat prescriptions, all my treatment for UC has had very little to do with my local Doctor (GP), including all my follow up care since my J pouch surgery.
Prior to diagnosis, I was initially treated in the A+E Dept at a local Hospital, which resulted in admission; which lead to ongoing follow up consultations over the years, thus totally bypassing my Doctor.
Due to a severe UC flare up during 2005, my bowel was removed.
If I knew then, what I know now; I would of probably had my J pouch 5 or 6 years earlier; as it was an eminent Vascular Surgeon who removed my bowel and some 6 months later, he decided I had Crohn's and not a candidate for a j pouch; which I foolishly accepted.
However, 9½ years later; my UC Consultant refered me to a local Surgeon who normally performed J pouch Surgery but he was actualy a Specialist Cancer Surgeon; who advised against the J pouch because in his opinion, I'd adapted well to life with an ileostomy; he also painted a very bleak picture of life with a J pouch.
By now, I'd discovered this forum and UK members recommended St Marks and also made me aware of the options available on the UK NHS.
When I expressed my concerns in regard to the opinion of the local Surgeon, without prompting my Consultant refered me to St Marks, which is roughly 300 miles away from my home.
Yeah, I had to wait; my first appointment at St Marks was Nov 2013 and my J pouch was created during June 2014, with my takedown during January 2015; I guess the only delay which could of been averted was the time between my first appointment and the j pouch creation surgery.
When entitled to treatment on the NHS, like others have said, most ailments are intially treated by a local Doctor (GP) and it's the Doctor, who makes the referral to the Hospital; any discussion of Surgery would normally be with the Consultant and or the Surgeon rather than the local Doctor.
I've been discharged from St Marks and also my local Hospital which I've been under for 23 years, so should I experience difficulties or complications with my J pouch, I will most definitely be requesting treatment at St Marks; I would more than likely contact St Marks before my local Doctor, although, I've not be given the name of anyone specific to contact other than maybe a pouch Nurse.
St Marks is a Centre of Exellence for Colorectal Surgery and the J pouch was pioneered there.
My J pouch surgery has been a phenomenal success and I can't speak highly enough of St Marks; I reminisce my time there like that of being on holiday (or should that be vacation).