Ibd buddy project uk

[ZIGGY]

Hi

Our local Health Authority has supported a plan brought about through our local NACC support group for an IBD Buddy project. This is giving new patients the chance to meet / be supported by an IBD patient to help them through their first few months of first being diagnosed with just initial emotional help/ but not to give out medical advice for up to the first three months of being diagnosed.

I have myself put myself forward to do this - as yet not met with a patient as I have to undergo some training groundrules before I do this .

When I was diagnosed at 23 I certainly could have done with this support outside my family unit. I did not have a specialist nurse to talk to.

Is anyone else doing this kind of volunteer work ? It is really being trialled for the first time with our group and it is still in its infancy.

ZIGGY

 

[Jennifer]

I'm currently doing it right now on this forum.

Not giving out medical advice for the first 3 months? So you can't suggest they have certain tests or even blood work done or suggest alternative medications? I wouldn't be able to do that. Would hate to wait three months to actually be able to help someone.

 

[FruitLoop]

I used to be a volunteer for Nacc in contact - the telephone advice line.

I really enjoyed it - had to quit once my Crohn's refused to play nice as it was geting harder and harder to offer empathy for people without wanting to say "you go twice a day? wow i go 30 times" iyswim ?

The difficulty with meeting other sufferers when you are initially diagnosed is that it could scare you silly!

I remember my first re-section and the woman in the next bed had every single complication that Crohn's could cause and i discharged myself in tears as i saw that as what my life held for me!

I do now have all sorts of complications but at that point just hearing that things that could go wrong was so scary!

I do think that newly diagnosed sufferers need information and support and think the buddy scheme should be all over?

 

[xX_LittleMissValentine_Xx]

I think it sounds like a good idea! I would like to get involved with something like that if it was in my area!

 

[GutlessWonder86]

The Crohn's & Colitis Foundation of America has many support groups through the U.S. where you can meet others like yourself. I've been involved with the local CCFA chapter where I live and attend the local chapter meetings because there are new members every month being diagnosed with Crohn's. The educational meetings are great because that's where I get to hear interesting topics from a variety of speakers such as dietitians, health insurance reps, drug reps, Q&A sessions with cool-rectal surgeons, panel discussions with ostomates on life with an ileostomy, sex therapists, humor therapists, etc.

I also belong to the local ostomy support chapter and we work hand in hand with the CCFA as they get calls monthly from patients who want to meet and talk to others because they are facing ostomy surgery and have tons of questions such as can they lead a normal life after surgery, will others notice they have the bag , can they eat a normal diet, questions on dating, exercise, etc.

We just had our Take Steps Walk yesterday and there were over 500 walkers!!!

With our ostomy group, I am the visitor liaison so when I get a call, upon the patient's request I will match them with an ileostomate according gender, age, social status, and type of ostomy. I always guarantee a callback within 24 hours as well as setting up a hospital visitation within 48 hrs. Seeing as I don't work, I realize the importance of getting back to the patient ASAP because they are anxious and have tons of questions.

Most of our members (including our officers) have full time jobs & our goal is to show potential newbies that you can lead a normal life and even work full time, thus the ostomate to be use to wait for a call back before I joined the organization, so I took it upon myself to run the visitation committee seeing as I knew what it was like to wait to get much needed answers when I was new to the whole thing. So with my being home all the time, I could put their fears to rest & not have them wait. Our results have been very positive and I've been doing it for 26 years. :heart: :thumleft::thumleft::thumleft:

My surgeon has referred several of his patients to me so that I can offer my expertise with what they are dealing with. Not only that but he is a HUGE supporter of our ostomy and CCFA chapter.

 

[ZIGGY]

Thank you for all you replies. Very interesting to hear other peoples views and what is available elsewhere. Being a Buddy means you work very closely and report back to the Specialist nurses so you write a report every time you contact the patient.

We also have patient forum every month in our Hospital for people to attend.

ZIGGY