We are pleased to offer you a brief summary of the candidates for nominations for the next term of office as outlined in Online, Issue 2.
Here are our candidates offering to volunteer for PINNT for a further 12 months, subject to the completion of the formal nomination process. Please read page 9 of Online, Issue 2, complete and return the form on page 10.
Please ensure you return your form by 29th July 2019
to the address on the form: PINNT, 12 Garden House Estate, Ryton, Tyne & Wear, NE40 4PN.
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.
I have been on TPN for what seems like a lifetime! After spending a long time in hospital undergoing many tests I was diagnosed with Visceral Neuropathy and Myopathy and told I would need parenteral nutrition (PN). Although I have accepted that this is my future, it did not come easy, after all I was working for the social services, I had a husband and a daughter Lisa and I just didn’t know how to deal with the life change, until I was introduced to PINNT. After years of talking to PINNT I finally began to accept that this was my future and with the support of PINNT I could lead a relatively normal life; whatever normal is!
Since I joined PINNT I’ve been involved with running a group, being an Executive Committee Member and been thankful to attend conferences, NHS meetings, met industry members and been part of many advisory panels – all making a difference for PINNT members. I thoroughly enjoy supporting and talking to others who have been through the similar situations.
For me, family is everything and I’ve delighted in being around to see my beautiful grandchildren grow into amazing individuals.
I am a law student and avid climber. I love to volunteer in my spare time, and I had parenteral nutrition for a period when I was unable to eat and drink sufficiently to sustain life. I want to be involved with PINNT because PINNT is a charity that I hold close to my heart. PINNT has continuously helped me and I am now in a position where I can give back and this is what I would like to do.
I thoroughly enjoy my previous insight into what it’s like to be involved with PINNT and this only fuelled my motivation. I would like to help others in a similar position to myself, as I understand just how unique our situations are and how few people there are in this position.
I would like to devote my time and skills to PINNT and to also join the excellent people already involved in PINNT, working with them to ensure that the high level of work at PINNT is constantly met. I have seen all that PINNT has achieved and know that much of what homecare patients enjoy today - in respect of products and services - is possible due to the hard work PINNT has put in over the years. PINNT tirelessly strives to make it better for patients and carers, there is so much more to do though!
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!
I’m from Southampton and in 2015 I was diagnosed with gastroparesis along with other complications and subsequently was put onto parenteral nutrition (PN) after a period of enteral feeding. It’s fair to say I’ve had a few catheters for my parenteral nutrition. I know about the life-threatening infections so I have first-hand experience of how challenging life can be at times.
As a special needs’ teacher, the world of enteral feeding wasn’t new to me at all. I’ve had extensive experience of administering feeds via NG tubes, J-PEGs and buttons. However, it was only when I was forced to rely solely on artificial means for my own nutrition that I truly realised the impact in has on lives. I am passionate about showing people what is possible with artificial feeding. I have always endeavoured to turn something - which could be a huge disadvantage - into a positive.
I feel that there is a great demand for more support for parents, and think that with my experience as a teacher, and as a patient, that I could help PINNT achieve their goal of supporting as many people possible who are living the lives we do.
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.
I am now 47-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 at enteral rucksacks.
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!