newly diahnosed crohns and hospital waiting issue

redlily

I am newly diagnosed with Crohns and was wondering if anyone has had a similar experience to me. I initially went to the Gastroenterologist privately as I was feeling so ill that I felt I could not wait. I was the put on the public waiting list for my tests(as privately was beyond my financial means), thinking I would be seen in 6 months....9 months later I was put on the Purchase fund and finally 1 year later had my proceedure. I received my results and was then referred back to the initial Gastroenterologist I had seen initially, only to be told I now have to wait for a 'few' months as I am classed as a new patient? I have already waited now 14 months and feel like my life is on hold.Does this seem right?? Has anyone else had this experience?
As of now I have no medication, no dietary advice and no one to complain to as such as I don't know who is responsible for me having to wait again!
I am usually quite positive but having to wait even 1 week more is very upsetting to me at the moment.
any advice is welcome

wild_swan

go to your gp & get him/her to get back to the gastro in the hospital - i don't think you should be classed as a new patient - but was it the same gastro diagnosed you? - maybe if they're sending you to a diff one thats why they're saying your a new patient. your gp can ring the gastro team & say how sick you are - this needs to be emphasised - that will put you up on a waiting list- also if you get really bad go to a & e of the hospital you are dealing with - if you are sick enough they will have to admit you. best of luck - i think if i were you get your gp to push the issue - also if you need some medications to tide you over they can give you some. but i don;t think its acceptable that a newly diagnosed crohns patient has no meds - its not right & you need to be given some treatment.

redlily

Thanks so much for your reply. It is the same Gastro that I went to privately for my initial consultation, I then went to a different team for the actual colonoscopy and endoscopy , but now am referred back to the initial gastro team...bit confusing, altho technically I have been waiting under the initial gastro team publicly for over a year.
Thanks for the advice, I will contact my GP and try that route:)

ladybirdirl

Hi there,

Sorry to hear of what you've been through.. I also have Crohn's & it's no fun having to wait to see the docs.

I think you have 2 options

1. Go to your GP as excellently suggested by previous poster..they are 100% correct, your GP can ring consultant & push it for you to be seen

2. Go to see the consultant privately again.. I know it's more epense but it's important to see where you're at now & get started on meds if necessary. You can always explain to the consultant that you're seeing him/her privately to get your diagnosis but then want to go on the public list


Incidentally, there is a facebook group that a lot of us crohn's patients are on..go to facebook & look for the crohn's & ulcerative colitis group.

There's also a website out there at the mo...we're trying to put pressure on the givernment to treat crohn's as a long term illness.

This may all be a bit frightening for you at the mo so I would advise you to check out the facebook group

Good luck with it

LB

redlily

Hi LB,

This is so funny...I just joined the facebook group and then saw your message,and I have already joined the longterm illness letter writing campaign too:)!
THANKS for your advice, I will get my doctor to push them, I'll let you know what happens:)
Yes it is suprisingly lonely getting the news, not at all what I expected, and I never take medication so that will be tough, but trying to remain positive!
Thanks again for the support, so great to know there are these groups out there, they really help!
x