Introducing
Carolyn Wheatley MBE

Hi, I'm Carolyn

Due to Pseudo Obstruction (Intestinal Failure) I am fed intravenously (HPN). Prior to starting feeding I experienced the rollercoaster ride of being misdiagnosed, misunderstood and feeling very isolated. Things have changed and improved!

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, fear 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, shopping as well as all the normal things that make us happy! Planning is a key part of life on nutritional support but despite a long-term medical condition and feeding I endeavour to enjoy life!

Introducing
Richard Shawyer-Clarke

Hi, I'm Richard

I have been a member of PINNT since 2006/2007. This was when I was put on 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 patient's 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.

Introducing
Steven Pearson-Brown

Hi, I'm Steve

I joined PINNT back in 2006 following a difficult time in and out of hospital for treatment of severe Anorexia Nervosa. Throughout these periods in hospital, I have been feed via nasogastric (NG) tube on and off since the age of 15 and only with this nutritional support have, I been able to maintain even 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 without life-long nutritional support and I was put onto enteral feeding permanently; at first by NG tube and now by PEG.

I started volunteering with PINNT as Literature Co-ordinator and EC member and currently I am the General Secretary, EC member and Trustee. Being involved with PINNT allows me to use my own experiences of enteral nutrition, but also through my undergraduate degree in clinical nutrition and master's in public health and health services research. I have since completed a second master’s degree in clinical Diabetes Management

It is through the support and understanding of PINNT that I was able to grow in strength and confidence; enough to accept & embrace my treatment and my life has improved so much. I feel a deep gratitude to PINNT and everything that they do, and I want to help them to continue reaching out to and supporting all those affected by artificial nutrition.

Introducing
Sarah Bailey

Hi, I'm Sarah

My major health problems began in 2002 when I was struck down with 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. In 2019 this was combined with enteral nutrition and now parenteral has been added.

Despite being predominantly housebound with multiple chronic illnesses, I still manage to make the best of life. When my health allows, I enjoy reading, cross stitch, taking photos in the garden, doing church activities via Zoom and connecting with friends.

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). The huge daily challenges of living with severe M.E. mean I’m limited in what I can do, but over time I’ve found small ways to help.

As a member of Team PINNT, my participation has become more varied. It’s exciting to know that every small contribution I make helps towards the overall aims of the charity. Although hard on my health, it’s a real honour to support PINNT in this way.

Introducing
Amy Martin

Hi, I'm Amy

Being part of PINNT is a privilege and great opportunity to support and champion those of home artificial nutrition (HAN).

Home artificial nutrition has been a huge part of  family life for the past nine years when our middle son, Ezekiel, started on his journey.

PINNT has supported us right from the beginning. Bringing him home as a little baby with an NG tube, to this very day, where he is fed via surgical JEJ and drained via Freka PEG.

As a parent carer a personal goal of mine was the try running more during 2023. After completing the couch to 5K course,  I embarked on the Durham City 5k to raise awareness of PINNT. I hope to continue running and raising awareness.

I look forward to working with PINNT on the executive committee and generally to support people on HAN.
 

Introducing
Debbie Phillips

Hi, I'm Debbie

I joined PINNT in 2012 when I was told I would need to be fed Intravenously (HPN). I had previously spent several years on Enteral feed where I felt I was alone and nobody else had this illness. Having fought going on HPN 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.

I have taken over as Membership Secretary  and would love to see PINNT grow in numbers of those who are artificially fed so that they could have the help, support and peace of mind that they are not alone.  My other 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 Healthcare settings.
 

Introducing
Aiste Kalinauskaite

Hi, I'm Aiste,

My artificial nutrition journey was 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 recently moved from London, to Northeast 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.
 

Introducing
Kimberley Pett

Hi, I'm Kim,

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 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.