Welcome to the Crohn's Community forum, where fellow sufferers can discuss their Crohn's problems and hopefully, get the support they need, even if only as a "listening ear". Some posters are in the process of obtaining a diagnosis, others have had it for many years, so there is a wealth of experience here.
I don't know where you live, but in England, where we have socialised medicine, many major hospitals have one or more IBD Specialist Nurses. My hospital has two and is currently recruiting another one. They work with the gastroenterologists. Their role is diverse, and they are involved in many aspects their patients' care. A large part of their role is the telephone helpline where they provide advice and support for anyone with any problem relating to their illness. Mainly this consists of patients experiencing flare ups of their disease. The helpline was set up to provide early advice and treatment so that patients did not have to wait for long periods to see their Consultant. By getting prompt treatment it udoubtedly reduces the severity of the flare and often avoids the need for hospital admission. One of the IBD nurses specialises in Nutrition and can help sort out an appropriate diet.
They liaise with GP's (General Practitioners) regularly, regarding new treatments, change of treatments and blood tests. Often patients' problems can be resolved on the 'phone but they will also frequently require a clinic attendance. The clinics have been set up primarily to see urgent cases booked direct from the helpline and this is a highly beneficial service that patients appreciate when they are unwell.
The IBD nurses have 2 outpatient based clinics a week and usually run these alongside one of the Gastroenterologists' clinics. They are given longer slots in which to see patients than the Consultants which gives them useful time to go through things in more detail. This is particularly helpful when patients are newly diagnosed.
They also run 2 treatment clinics, one for Remicade and one for Methotrexate. The Remicade clinic service involves booking all the patients, assessing they are fit to have the drug and monitoring all blood tests. They have just started using Humira as an alternative to Remicade in some patients and this is set up in the patients' home through a Home Care package, but the IBD nurses oversee and organise the service.
Part of their role involves seeing patients on the ward and giving advice on treatment and providing support. The rest of their role (when they have the time) involves some teaching, either student nurses or medical students, and audit. This is important in that without audit it is difficult to see where changes need to be made. So far they have audited the Helpline (through patients' questionnaires), the Remicade service and more recently the prevalence of osteoporosis in IBD.
I have had cause to use their telephone sevrice a number of times, have found them to be extremely knowledgeable and they have intervened on an urgent basis recently for me, to see my Consultant the next day.
Our IBD nurses cater for a large catchment area and they estimate they have approx. 1500 patients and are kept extremely busy.
I am not sure if this is the response you are looking for but if not, please come back with any queries and we will do our best to help.
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