Candidates for nomination

15/10/2024

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 7th November 2024.

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!

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.

Kim Pett:

I was introduced to PINNT in 2016 when I started experiencing intestinal dysmotility. Since then, my journey has taken me through the whole range of nutrition supplements, enteral feeding and HPN, with many different lines and tubes along the way. PINNT has been invaluable throughout both as a source of information and support, and being able to meet and talk to like-minded people.

I was initially very apprehensive about many of the available options, but despite ongoing health issues, optimising my nutrition is the thing that has had the biggest positive impact on my health and ability to live my life to my best potential.

I feel really passionate about being able to use my experiences and what I’ve learnt to be able to support others in similar situations, and it is this which led me to join the PINNT committee. I am really enjoying being able to contribute to projects which can improve the lives of others on HAN and look forward to continuing to do this.

Aiste Kalinauskaite:

My artificial nutrition journey was fairly short - a few weeks of trialling oral supplements and then two weeks of feeds through an NG tube resulted in symptoms worsening and my weight either dropping further or just about staying level.

I was diagnosed with the intestinal failure resulting in the need for intravenous nutrition. For the last 2.5 years I have been on it. I love yoga (both teaching and just doing it for my own benefit), hiking, reading (including audiobooks), knitting, cross-stitching, and meeting friends for some card games. Although over the years my hobbies have been shifting a lot and at some point included gardening, travelling (I still do, but mostly in the UK nowadays), horse riding, tai chi, qi gong, sudoku, anti-gravity yoga, sewing and some furniture making (nothing fancy). I also love reading about various conditions - a passion that I had since my pre-teen years being buried in the encyclopaedias and currently helping me when working with the yoga therapy clients.

I currently live in London, but will be moving to North East shortly. Having multiple national parks and Areas of natural beauty aligns with my interests better. I supported HAN week for the last two years and in general I found the PINNT community to be of immense help and support. I feel this is a perfect time to get involved and help where I can even more.

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