Core Group Updates PINNT


Reported by STEVEN BROWN PINNT weekend event


A weekend that offered so much: the perfect mix of patients, partners, family members, friends, industry and a topping of healthcare professionals, the perfect recipe for a PINNT weekend.


It takes a lot of courage for some people on artificial nutrition to consider leaving home to stay in a hotel where they don’t have access to all the familiar things that make their treatment happen in the usual way at home. Having held weekend meetings before, PINNT are well versed at pre empting many of the concerns members might have; clean comfortable bedrooms, power sockets, access to appropriate medical storage as well as the right environment in which they can relax and socialise. The meeting was supported by an excellent mix of our industry friends and it was good to see patients gaining information on a number of issues which empowers them to influence decisions on some aspects of their homecare and personal needs. Given in today’s world we hear so much about ‘empowering patients’ and ‘patient choice’; this can only happen if patients know what the choices are, PINNT aim on a number of levels to promote choice.


As it was family event we made sure the children were catered for; we had budding Andy Murray’s on the Wii tennis as well as the Giant Jenga and Connect 4 championships. The bouncy castle proved a huge success and the colouring and crafts kept the children happy; the dedicated children’s room was a delight to see, mess everywhere with lots of smiling happy faces and relaxed parents.


The formal programme has been based on topics that PINNT members are concerned or


interested in; an informative talk about benefits from an advisor from the Disability Alliance followed by an extremely honest and moving presentation from Molly, a young lady of 20, who after living all her life on PN at 16 had a complete intestinal transplant. Her father followed her with his version of the journey and again his honesty and frankness raised not only our emotions but a little giggle at times; with small areas of sarcastic wit. Dr Woodward rounded off the session with some a medical perspective which completed the session. The final session of the day addressed the issue that really concerns patients and carers; the misuse and abuse of line and tubes. PINNT’s specially formed nutrition team: Dr Gabe, Becky White and Pete Turner addressed best practice for enteral and parenteral feeding. It was concerning to hear that many people still face major issues when they try to protect their feeding lines and actually enforce best practice. The team did an amazing job at addressing the concerns and many felt it would be beneficial if all the healthcare professionals they came into contact with were as approachable as the PINNT nutrition team. Sadly our paediatric and adult nutrition nurses were unable to join us. Dr Gabe was a very acceptable substitute for Angie Davidson!


After some R&R, it was time for the main event the ‘Superheroes and Hollywood’ evening. We had everyone from James Bond to the latest A listers, Danger Mouse to the Ninja Turtles,


princesses and fairies. Given some of our attendees cannot eat dinner was carefully managed to ensure it was not seen as the main event of the evening. The fabulous disco by Trevor T (some may recall from BAPEN conferences in Telford!), the bouncy castle, the raffle and the fun party treats certainly kept the wider focus on fun and enjoyment and not just food and drink. As usual at a PINNT event the dance floor was filled with people, pumps and lines all making the most of being able to feed, relax and socialise without feeling uncomfortable or different. Sunday saw the formalities of the charity, the AGM, followed by an interesting session on ‘travelling with artificial feeds’.


Holidays are fun


and rewarding but the practicalities need addressing before embarking on a holiday. We had a fantastic interactive session with excellent input from our members as well as homecare providers. We addressed both the positive and negatives aspects of travelling.


The meeting was rounded off with a ‘Step up to the Mic’ session. Our nutrition team took questions on a diverse range of topics; medical, surgical, practical and governance.


Once again PINNT provided an environment where all people were equal; a level playing field for patients, carers, families, industry and healthcare professionals alike.


Next year PINNT will be 25, the question is how to mark the occasion?!


BAPEN In Touch No.62 August 2011


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