Candidates for nomination

20/09/2023

We are pleased to offer you a brief summary of the candidates for nominations for the next term of office.
 
Here are our candidates offering to volunteer for PINNT for a further 12 months, subject to the completion of the formal nomination process. Please ensure you complete the survey monkey form by 8th October 2023.

Click here to complete the survey

Carolyn Wheatley: Due to pseudo obstruction/intestinal failure, I am fed intravenously (HPN), I’m a bit of an old timer now! Prior to starting parenteral nutrition, I experienced the rollercoaster ride of being misdiagnosed, misunderstood and feeling very isolated; thankfully things have changed and improved enormously for me now. Despite the routine of a complex medical procedure and treatment, I admit life isn’t so bad now.

Being associated with the founder members of PINNT I feel privileged to have been involved since PINNT's inception and continued growth. There was a shared passion to bring together artificially fed people into a forum where experiences, fears and ideas could be shared. We have achieved so much - worked to bring new equipment and services to those on home artificial nutrition.

When I can I enjoy travelling, gardening, musical theatre and of course, retail therapy!

Steven Pearson-Brown: I joined PINNT back in 2006 following a difficult time when I was in and out of hospital for treatment of severe Anorexia Nervosa spanning eighteen years. Throughout these periods in hospital I have been fed intermittently via a nasogastric (NG) tube since the age of fifteen; only with this nutritional support have I been able to maintain a remotely healthy weight. Following many unsuccessful "normal" treatment attempts, it was decided that I was unable to physically or mentally manage to maintain a healthy weight with life-long nutritional support and I was put onto enteral feeding permanently; at first by NG tube and now by PEG.

My role within PINNT is diverse having performed the role of General Secretary, EC member and Literature Coordinator. It’s very much teamwork within PINNT, no one takes any personal glory; it’s about supporting each other to achieve PINNT’s aims and objectives. My personal experiences of enteral nutrition contribute to many aspects of PINNT’s work. It is through the support and understanding of PINNT that I have been able to grow in strength and confidence; enough to accept and embrace my treatment and, as a result, my life has improved so much. I feel a deep gratitude to PINNT and everything that the team does, and I want to help PINNT to continue reaching out to and supporting all those affected by artificial nutrition.

Richard Shawyer-Clarke: I was put on parenteral nutrition (PN) following a difficult set of teenage years. I was diagnosed with Crohn's when I was 10 but escaped major surgery until I was 16. This was mainly with enteral feeds such as Elemental 028 and Ensure. Since then I have had to have a lot of surgery and now have a short bowel so am fed with PN; which for me has made me extremely well. To this day I still hold down a job and I am the only commercial pilot in Europe to be fed in this way.

My personal aims with PINNT are to build on the membership, both PN and enteral so that the 'patient' has a stronger voice should the government look to change anything. I am also proud to be associated with a charity that has made so many differences to patients’ lives; PINNT is responsible for bringing portable pumps to the UK, designing certain rucksacks and drip stands amongst others. I look forward to working with the officers and my fellow trustees to help better the care that patients receive and inform patients.

Debbie Phillips: I joined PINNT in 2012 when I was told I would need to be fed by parenteral nutrition (PN). I had previously spent a number of years on enteral feed where I felt I was alone and nobody else had this treatment. Having fought going on PN for several years I eventually came to terms with the fact that this was the only way forward. Being a member of PINNT really helped in the beginning as I could follow discussions on the members’ forum and see that there were other people out there who were having the same issues as me and look at some of their ways of solving the problem.

Despite there being roles within PINNT, we help each other given the nature of our own personal situations. PINNT has grown in numbers since I joined and it’s rewarding to see the help, support and peace of mind that it offers to members. Knowing you are not alone is very important. My wish is that we can reach out to as many individuals as possible to ensure that those who are artificially fed are treated correctly when in hospital or other healthcare settings. PINNT has made a credible contribution to the world of home artificial nutrition and it’s great being part of that!

Colette Taylor I am 44 and am happily married with a beautiful 16-year-old daughter.

I work in a special needs school. I have worked with children for 25 years 21 of which have been with special needs. Within my job I work with children that have a range of physical and educational needs. I care for children with gastrostomy tubes and nasogastric tubes using various pumps and bolus feeding. I work along side school nursing staff as well as language and speech therapists and dietitians. I find my job really for filing and rewarding. Out of work I enjoy spending time with my family and friends. I have done lots fund raising for charity. I did the Yorkshire three peeks, the great north run, Snowdonia and lots of themed days. Also, in the little spare time I do have I love nothing more then to go in my craft room and be creative.

I have got involved with PINNT as I live with someone that has a gastrostomy tube and see what he goes through day to day. I want to be able help other families that go through what we do. When my husband became sick and we started down the scary journey I felt helpless and so along, I didn’t feel like I had anyone. unsure how our life was going to be I was feeling in a way that I didn’t feel I should as I was not the one it was happening to. I now know this was ok and not wrong to feel like that. I want to be able help other that are in the place I was in.

Also I want to be able to offer the knowledge that I have gained along my working life.

I am looking forward to this new and existing journey with you all at PINNT.

Gary Taylor: I am now 48-year-old electrical engineer, living and working in small town called Halifax in West Yorkshire. Back in 2016 I was diagnosed with a rare tumour in my neck, it was benign. I had it removed in August that year but unfortunately, it’s left me unable to eat or drink, so I am now dependent on enteral nutrition. I would like to represent enteral patients and help PINNT fulfil its ethos of supporting people on home artificial nutrition

In my spare time I like to play football and go out walking. I have just done Yorkshire 3-Peaks (Y3P) in nine hours 45 minutes. I have tried to run Y3P, which was completed in six hours but also need to add pit stops to that time, at two hours I had a bad turn on my second pit stop, so I will try again one year. Other activities I like to do include playing squash but the main one is running. I have just completed the London Marathon 2019 in three hours 56 mins 34 seconds. Hopefully one day I will be able to have completed the main six marathons.

I am keen to assist PINNT with all I can, already I have been asked to help with PINNT presentations and looking a new backpacks.

Amy Martin: My name is Amy and I am a single Mam to three adventurous, busy little boys, 12,9,4. 
I am a trained primary school teacher but have more recently started a new role working in higher education being involved in the PCPI project at Sunderland University. 

My middle boy, Ezekiel, has been Jej tube fed for the majority of his life. He has demonstrated over the years compassion, kindness and a passion to advocate and raise awareness for enteral feeding. 

When Ezekiel was at the beginning of his feeding journey, I struggled to understand and accept how best to support him.  It was thanks to PINNT that I didn’t feel as isolated or lonely and I have gained more knowledge and wisdom. 

As a parent carer I look forward to being involved and supporting PINNT as best as I can whilst still learning from all others on their own feeding journeys. Thanks for the opportunity!

Sarah Bailey: I'm Sarah and my major health problems began in 2002 when I developed severe M.E. This was followed by other chronic conditions, including gastroparesis and gut dysmotility.

Oral nutritional sip feed became my sole daily menu from 2011, but over time this proved inadequate to sustain me. So, since 2019, it’s been combined with enteral nutrition (initially via NJ and now PEG-J). 

Before being struck down with chronic illness, I worked as a primary school teacher, and then part of the admin team at a large church. Despite the huge daily health challenges I face, I still make the best of life and find enjoyment in the little things I manage to do.

When I joined PINNT in 2014, I quickly realised that I wanted to give back to the charity, as it offers such amazing help and support to those on Home Artificial Nutrition (HAN). Although hard on my health, over time, I’ve managed to find small ways to help. 

My participation has become more varied this year. This has been exciting as I know that every small contribution I make helps towards the overall aims of the charity - to support, educate, inform and advocate for those on HAN. It would be a real privilege for me to work with the Executive Committee for all PINNT members.
 

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