| Carolyn Wheatley - Chair
Knowing the isolation and fear when I first started feeding 26 years ago, I welcomed the invitation by three fellow patients to start PINNT. All of us shared a desire to bring together artificially-fed people into a forum where experiences, fear and ideas could be shared.
Even though we are all individuals with personal expectations, the common factor of being on home artificial feeding enables PINNT to support people in the same position, as well as sharing our experiences and expectations with healthcare professionals and industry.
Jan Curtis - General Secretary
I have taken over from Justine Bayes as PINNT's secretary. Justine was secretary for some time, and managed the job very well - she is going to be a hard act to follow!
I live in East Sussex and I have previously worked for various charities such as SCILL - an educational and recreational centre for people with disabilities, and Homemead, where I was the Director. I also had a salaried job as an estate agent, as well as volunteering for North Ward in Uckfield - working with the local police, which I am still involved with now.
A few years ago I had the need to call on PINNT for help and advice due to my daughter's illness. By becoming secretary I feel I am giving a little back to a worthwhile cause.
Sarah Green - Membership Secretary
I'm Sarah and I have a son called Daniel, who has had a jejunostomy since he was 2 months old. Before this he had a gastrostomy from his birth in 1996. I also have 3 other children, Zoë, born in 1994, Jamie born in 2000 and Jo, born in 2007. We live in Kent. I am also the Membership Secretary for PINNT and I feel I would like to give back to PINNT that support I had and still have with Daniel on artificial feeding.
Keith Nurcombe
I currently work running my own business providing consultancy to companies working with the NHS and to help the NHs work better with private companies. I am currently spending most of my time working in London for a small company called Health Smart.
I found my way to PINNT by working in the past for a homecare company and meeting many patients and their children on TPN. It gave me a basic understanding and a want to try and help where possible. I was previously a member of PINNT and on the EC for about five years between 2000 and 2005 when I finished the role as Treasurer due to family commitments and work I was unable to continue. I was also very actively involved in the Events committee and worked on a number of the PINNT parties in the past.
I am divorced with three children and thought it would be lovely to come back and work with PINNT again as I seem to have more time on my hands now as my children grow up. When I do get any spare time I enjoy reading, sailing and skiing and I am slowly trying to learn to ride a horse!
I look forward to meeting as many of you over the coming months in my new role on the EC. |
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Lynn Tourle - Treasurer
I live in Uckfield, East Sussex. I became unwell in 2001 and after extensive tests, was diagnosed with Pseudo Obstruction of the Bowel. Since being diagnosed I have spent extended periods of time in hospital (my first admission on diagnosis was 9 months). I have an ileostomy and I am one of less than 30 people in the UK who has a gastric pacemaker. I have had both types of feed, but was on enteral feed for over 5 years.
In 2008, I experienced difficulties with several severe infections in my Groshong line (similar to a Hickman Line) so it was removed last year. At the same time I was also having problems with my PegJ - part of this was caused by my own bowel going into almost continual reverse peristalsis. After persevering for a number of months it was decided to remove my PegJ.
I then started another journey getting used to living without my line and PegJ. It remains a challenge to manage all my nutritional needs orally, but with Fortisips as a back up I do. Like most of us, I have good and bad days but life is getting better. I am being closely monitored by my local hospital to make sure things remain well.
My family came across PINNT in the very early days and at a time when I was entering into the very bewildering world of artificial nutrition. The support that we were given was fantastic, and I now find myself in the position where I spend longer at home. I decided to offer my help to a charity that, in my eyes, has been at times the only light on some very dark days. If by giving up some of my spare time and sharing my on-going experiences of living with a chronic illness helps just one person, what more can I ask for?
Geoff Simmonett
My first introduction to PINNT was from my gastroenterologist when I went to see him to review the PEG he had recently fitted. I became a member and found the work that PINNT does in supporting and informing fellow Enteral and Parenteral nutrition users like myself was very rewarding. It has also given me the chance to use the knowledge I have gained about artificial nutrition to try to improve the quality of life for other users.
David Schneider
My twin sons were born prematurely and subsequently diagnosed with 'failure to thrive'. Feeding was a nightmare early on. Making contact with PINNT and talking to other parents provided some answers.
Why do I offer my services as an executive committee member? Because I want to give something back to PINNT for helping me and I think it important to promote PINNT's message - that you're not alone and that patients can help professionals to help them.
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