PINNT weekend event - read all about it!
When is a party more than a party; when it is a PINNT weekend event.
The PINNT weekend event took place on 18th & 19th June 2011, Village Prem Hotel, Solihull.
It was 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. For others it isn’t so daunting; our aim was to cater for everyone.
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. We did not want any of our members to feel uncomfortable during our event.
The meeting was supported by an excellent mix of our industry supporters (see the list below), it was good to see patients gaining information on a number of issues which empower 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. It was rewarding to see genuine interest in the companies and for those providing homecare services people were able to put faces to names, absolutely fantastic!
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 (adults and children alike!) 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 had been based on topics that PINNT members have expressed concerns about or were interested in which could enhance the lives of those living on home artificial nutrition. We kicked off with 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 a medical perspective that enabled us all to understand the process in a much easier way, this completed the session.
The final session of the day addressed an issue which is regularly talked about or reported to PINNT - 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 to 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!
The programme catered for some time out so delegates could either relax or enjoy the hotel facilities. Some had relaxing baths, a drink in the bar or swim in the pool before ensuring they arrived back at the Inspiration Suite for the evening 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 was pure entertainment in itself. He serenaded the ladies, played his trumpet and even made sure the children had their own time by announcing the rocket balloon race! The bouncy castle was consistently fun for everyone, there was so much to enjoy – not forgetting the fun people were having finding out who was behind the masks and costumes. 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. It was a truly information sharing session.
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 – what this space!
A big thank you to the following companies who supported our meeting during the exhibition:
- BBraun Medical Ltd
- Calea UK Ltd
- Salts Healthcare
- Smiths Medical
- CME McKinley UK Ltd
- Bullens Home Healthcare
- Willow Healthcare Services
- Inspiration Healthcare Ltd
Many of the companies representatives joined us for the whole event. PINNT value their support but also feel the forum invites dialogue in a relaxed forum in which people can address issue that not only concern them but enables them to grow and feel more confident in relation to their life on artificial nutrition. What may seem obvious to others may not be logical or practical to those living with it or on in and vice versa to those supply or prescribing artificial nutrition.
PINNT wish to thank the following people and companies who donated prizes for the raffle. All donations were welcomed and during the event PINNT raised £410 – all proceeds go to PINNT general funds.
“Just to say ‘thank you’ for a wonderful weekend, I had a great time. I am looking forward to the next, thanks”
“What a wonderful weekend it was. Ian and I thoroughly enjoyed ourselves and found the guest speakers talks very useful … Once more we felt like part of a very big family, with a common factor. We have made new friends and I am sure we will be friends for life. I also feel that being in fancy dress drops everyone’s reserve and makes communication with new people so easy …The whole weekend was a complete success”
Jenny and Ian
“Thanks for a fantastic weekend. You should be proud of yourself and your committee as it had the perfect balance of good education and practical help and the social side”
“We had a fantastic time thank you so much!”
Nicki, Rik and Callum
“Great weekend and to top it off we went to Cadbury world on the way home! I talked to lots of new people and thought the speakers and party were excellent”
Heather and Rob
“What a fantastic time we all had at the weekend, the PINNT do's just keep getting better and better. It was such a laugh getting dressed up for the fancy dress disco and the DJ was brilliant. When we were thinking about if we should come along or not and if we could afford it and what have you, well all I can say is, YES it was priceless yet again, meeting all those other people and listening and learning so much about new things coming along, you can't put a price on that. Thank you PINNT committee for all the hard work that you must have put into the weekend because me and my family loved every single minute of it, it's just a pity that it went so fast”.
Jason, Amanda & George
“The PINNT meeting this year was outstanding. From my perspective it was a pleasure to meet such a group of capable patients, with their families. They were able to learn from each other, learn from the speakers and also able to socialise. It was perfectly organised and everything went to plan and full credit goes to the organisers. It was an honour to be able to share this experience with everyone there. My only suggestion is that the meetings need to be more frequent?”
Dr Simon Gabe
“I loved the weekend. It has given me so much confidence. I don't feel a freak or alone anymore”
A thank you to Bupa Home Healthcare for providing the medical storage items.