Access to specialist nurse

[spoul]

Do any of you have access to a nurse in gastroenterology who can offer support between clinic appointments ?

[Hidden]

Hello spoul.

No I don't.

I find it bizarre that at my GP surgery (and probably nationwide in the UK?) there are allsorts of clinics for this and that, ie COPD, Asthma, Stop Smoking, etc) but under the Long Term Conditions category at mine, there is nothing that you could put PBC into. Perhaps there should be a 'Miscellaneous' one!

I know if you have diabetes for eg you do have the access to a nurse who specialises in this but not sure about anything related to the liver.

[spoul in reply to Hidden]

They're usually based at hospital but with cuts not sure if available everywhere 😊

[Hidden in reply to spoul]

Hiya again spoul.

Yes my first sentence in response was about a specialised nurse hospital based. Thought I'd mention the fact that GP surgeries in the UK only seem to have certain clinics that deal with certain conditions.

I was originally given appts for the healthcare assistant when I went for bloods but she couldn't put the GGT on that I usually have (the consultant spoke about this after diagnosis. He wrote it on the envelope for my repeat bloods at the GP surgery, said it was one 'usually missed'). I started booking with the nurse and went through them with her prior to her drawing blood. She used to add the GGT. I got a lecture once off a receptionist when I rang to book the bloods, she couldn't see why it was important that I wanted to book in with a nurse as opposed to a healthcare assistant.

[Hidden]

There is a specialist nurse at my clinic but I don't have access to visits, I only know there is one because she wrote to me about a reasearch project.

[Debbiem40]

Have never seen a nurse, just the Consultant every 6 months at the hospital, I feel there is no need for anything more.

[spoul in reply to Debbiem40]

Hi Debbie im supposed to see my consultant every 6 months but unfortunately these often get cancelled by the hospital. I do get my 6 monthly ultrasound on time but I need quite lot of support and reassurance at the moment being stage 4. The nurse performed my fibroscan 3 years ago but I have a feeling her post has been shelved due to cuts 😊

[Chrisprio]

At my first consultation with a liver specialist (I'd asked for a transfer here from my local hospital and gastroenterologist) I was introduced to the specialist nurse and given her contact details should I ever need them. I did contact her initially but knowing that I could if I needed to is a huge support.

[Chrisprio]

I meant to say that I really hope you get the support that you need.

Best wishes, Cx

[spoul in reply to Chrisprio]

Thank you for your kind words x

[Lisacj]

Only in hospitals. I know Royal free does but Kings Collage doesn't. Actually they would save money if we had a point of contact for minor questions and support. It seems to me that PBC is so insignificant in the sceme of things, we don't get much at all, thank god for the foundation fighting our corner.

[dianemle in reply to Lisacj]

I am at the Royal Free and have never been offered a support of a specialist nurse. Saying that Dr Thornburn my consultant has given me his email address so I can contact him when I need to.

[spoul in reply to dianemle]

Thanks for your reply I've found out the name of specialist nurse now and will be making contact soon 😊