Core Groups Updates

Carolyn Wheatley, PINNT Chair

Email: cwheatley@pinnt.com

Website: www.pinnt.com

Twitter: @PINNTCharity

This week (7th-13th August 2017) we are running our 5th HAN Week. The event varies each year and we ask you to take part where possible.

Listed below are the activities we have planned. This is followed by 'what you can do' to promote and raise awareness of home artificial nutrition (HAN).

PINNT plans

• Our new website will be launched.
• We will be co-authoring features related to home artificial nutrition which will have a strong patient focus. We will share information on these close to the event. They may not necessarily be released during HAN Week but will be written with 'awareness' in mind.
• Our 'patient/carer' stories will be featured on a daily basis. For us, it's all about those on the receiving end of home artificial nutrition. A wide variety of conditions/illnesses unite people with the common factor; HAN. We delight in sharing how people live because of their HAN.
• Promoting a special event; a PINNT member who is having her hair cut for charity. Thanks to her HAN and despite her condition she is desperate to help someone else by donating her hair to the Little Princess Trust who will make a wig for a child going through cancer.
• Our annual get-together/AGM will be held on 12th August 2017 at the Homerton College, Cambridge – if you would like further information, please email: scottee@pinnt.com
• 'Project Verify' – an exciting project based on requests from members.'Project Verify' will be launched in two phases; full information will be announced soon.
• We hope to release a video during HAN Week.
• Facts/thoughts will be used on social media each day for HAN Week.

What you can do during HAN Week

• Share your story/social media or local newspapers/radio – your personal experience can inspire or support others. There are variations in all our lives but something you say may strike a chord with someone. Sharing your story may just make a difference to someone else. You can share it on social media, your own Facebook page, PINNT's Facebook or Twitter page. Remember to include the HAN logo – #HAN2017 @PINNTcharity.

  Please include a short statement about PINNT and the www.pinnt.com

• Facebook – either donate your profile picture with the HAN logo or add a twibbon to your existing profile photo. Follow us on Facebook and Twitter - share stories to raise awareness.
• Hold a coffee morning – use it as a social event to raise awareness about artificial nutrition.
• Schools/playgroups – consider asking if you can go in and talk to the children/teachers about home artificial nutrition. Explain how it works; take questions – make everyone feel at ease about it.
• Company related to HAN/manufacturer – arrange an informal session or arrange a display to share with colleagues what your role is in terms of HAN. Tell them how your company/products/or service links into helping people on HAN.
• A healthcare professional helping to care/support people at home – share the work you do with colleagues; showcase the difference you make to those on HAN. Ask PINNT to send you a poster so you can direct people to PINNT.

To keep up-to-date on all HAN Week activities, please visit: www.pinnt.com, like us on facebook and follow us on twitter.

Claire Campbell, Communications Officer

Email: nationalnursesnutritiongroup@gmail.com

Website: www.nnng.org.uk

Twitter: @NNNGUK

July saw Bournemouth host the NNNG Conference which, as well as being a first visit to the coast, was also the first time a separate paediatrics symposium had been held. This proved hugely popular and our thanks go to Hazel Rollins for organising this. The conference attracted some fantastic speakers, including Dr Patricia Oakley and Dr Frances Healey who both presented very different but equally thought provoking sessions. The COPD symposium provided a series of sessions which highlighted the complexity of caring for this patient group, from the medical perspective, through to community care and a patient case study. The Conference also showcased the work of its members, with Margaret Collins from Cheltenham and Gloucester Royal Hospitals, winning the Pamela Harris Lecture. The success and diversity of this year’s Conference has generated ideas and enthusiasm for next year and so planning is already underway.

The NNNG has seen a number of Committee members come to the end of their terms this year, in particular Carolyn Best. Carolyn has been a huge part of the Committee in various roles, including her tireless work as secretary and membership coordinator. She will be missed and we wish her well for the future. However, with new nutrition nurses joining the group and the Committee there are exciting times ahead. The NNNG remain involved in national work streams, including NG safety and standardising PN administration protocols. Most recently, work has begun alongside dietetics colleagues at PENG looking at the development of training programmes for extended skills for dietitians. With the ever changing landscape of the NHS and the roles of the healthcare professionals working within it, there is a need to embrace a new way of working to ensure that we remain relevant and continue to provide the level of care and service that our patient’s need but, ultimately, good nutrition still needs nurses.

Jutta Köglmeier, NIFWG Chair of BSPGHAN

Email: Jutta.Koeglmeier@gosh.nhs.uk

Website: www.bspghan.org.uk

Meetings 2016

The members of the NIFWG (Nutrition and Intestinal Failure Working Group) met in January at the annual meeting and on 1st December prior to the intestinal failure and rehabilitation study day in Newcastle.

There were two meetings jointly held with BAPEN. The BAPEN paediatric day took place on 8th November at the 2016 Annual Conference in Brighton and focused on nutrition and gut function and hospital nutrition support. The third paediatric intestinal failure and rehabilitation meeting organised by Julian Thomas was held in Newcastle on 2nd December 2016. The programme was wide spread and included talks about immune dysregulation of the gut, a consensus approach to decision making in long-term PN for children with neurodisability, non transplant surgery in IF and outcome of small intestinal transplantation in UK children, motility disorders, and the current state of Paed e-BANS. Blenderised diets and child protection concerns amongst children on home PN were discussed in workshops.

Paediatric e-BANS

A major focus of the group in 2016 was to ensure that the paediatric section of e-BANS (Paediatric electronic-British Artificial Nutrition Survey) will continue to be accessed by the intestinal failure units and all relevant patients are captured. Andrew Barclay who continued to lead on Paediatric e-BANS gave an update at the Intestinal Failure and Rehabilitation Study day in Newcastle and summarised what has been achieved to date. Andy stepped down from his role as Paed e-BANS chair at the end of the 2016 and has written a report and made recommendations what the next chair should take forward. The NIFGW would like to express profound thanks to Andy for his hard work and achievements.

Akshay Batra took over the role as Paediatric e-BANS Chair from Andrew Barclay in January 2017. In order to share the significant workload, the structure of Paediatric e-BANS has been changed. From now on the Chair will be supported by a Secretary (Julian Thomas) and Regional Deputy Lead (Tony Wiskin). A dedicated deputy for each region has been chosen to make sure that data collection is complete.

Meetings 2017

The members of the NIFWG are planning to meet three times in 2017.

A joint symposium on intestinal failure to be held both for paediatric and adult health professionals is planned to take place at the 2017 Annual BAPEN Conference in Birmingham on 20th November. The draft programme looks exciting.

BIFA

Theo Wong has taken over from Sue Protheroe to represent BSGPHAN. The BIFA Position Statement (2016) on Home Parenteral Nutrition (HPN) has a reference to children and is published online.

The group continues to focus on a number of projects, including:

• Guidelines for the diagnosis and management of intestinal failure in childhood
• The development of a decision making tree for feeding neuro-disabled children with deteriorating intestinal function in conjunction with the Royal College of Paediatrics
• To obtain funding for a randomised controlled trial investigating the use of Taurolock prophylaxis for the prevention of central venous catheter associated sepsis
• To develop a practical ethical framework for decision making in severe neonatal intestinal failure
• To establish guidelines for the use of blenderised diets in children
• To publish recommendations for the best method to wean children from intravenous to enteral nutrition
• To carry out a national survey on jejunal feeding practices in children across the UK.

Following completion the group would like to publish the documents both on the BSGPHAN and BAPEN websites.

Kate Hall, PENG Chair

Email: communications.peng@bda.uk.com

Website: www.peng.org.uk

Twitter: @PENGDT

Since the last edition of In Touch the PENG Clinical Update Masters Course team have been busy organising and delivering another successful Clinical Update Course for dietitians. The course was oversubscribed and there was much activity on twitter during the time of the course – access @PENGDT for more details.

Feedback from the Course so far includes:

• “Excellent course, very informative and provocative, making me think about many things I have been doing and re-think about the levels of evidence supporting my dietetic decision. A catalyst to encourage me to return to work to do audit and change my practice, love it!!"
• "I have had a great week and learnt a lot of new information but also feel more confident in other areas. I will be promoting this course to my colleagues."
• "Fantastic group of people - friendly, approachable and human. So nice to meet people whose names you've seen in literature and realise they're actually all friends and normal people and like a laugh the same as you do with your own colleagues. Makes you feel like you could be there too one day and that the idea of a hierarchy of experts, researchers and leaders isn't really so true."

We have just launched our competition for the opportunity for a PENG member to win a free place on the 2018 Clinical Update Masters Course – more details can be found here.

Bruno Mafrici and Vera Todorovic are leading on the updating of the PENG Pocket Guide to Clinical Nutrition, which is a big undertaking and there is exciting new research that will be shared for one of its' chapters. We are expecting the revised edition to be ready early 2018, but pre-orders will be taken at BAPEN Conference. All dietitians who are PENG members during the membership year 2017-2018 will automatically receive a revised edition as part of their 2017/18 membership year.

As some of you may have seen PENG have just announced the first draft of the pre-BAPEN PENG Study Day on 20th November 2017. Further details will be featured in the forthcoming e-PENlines. We have also announced the PENG Award 2017, which is open to all PENG members – deadline of August 25th – click here for details.

Thank you to NNNG for inviting PENG to their recent Conference. It was great to have a presence and have the opportunity to be at some of the sessions. Thanks to Sam Arter (PENG member) who represented PENG and will be sharing her insights with PENG members in the upcoming e-PENlines. As this edition of In Touch ties in with the launch of PINNT's HAN Week, PENG would like to take the opportunity to say a thank you for giving us the chance to further raise the awareness of the needs of those individuals who have artificial nutrition support during this Week and celebrate 30 years of PINNT.

Ruth Newton, BPNG Chair

Email: ruthnewton1@nhs.net

Website: www.bpng.co.uk

I hope everyone’s summer is going well. We are in the process of planning our next study day which will be in October, and looks at fundamentals, along with finalising our symposium for the annual BAPEN Conference.

At BAPEN Conference we hope to launch the first of our position papers on micronutrients, so if you are attending please come and see our stand and say hello. As for our recent activity, there is still time to express interest in our point prevalence study looking at the standardisation of adult PN. These results will then be presented as part of the Carter Report Working Party looking at the decision making process for the regime given to each patient and why.

We also attained Foundation Training provider status from the Royal Pharmaceutical Society (RPS) recently, which is a big achievement. With the imminent launch of our new website you will then be able to see the logo and also see what opportunities, in terms of training, this will provide for our members. We continue to hold meetings with the RPS with respect to training and with the other stakeholders in order to provide key training for all grades.

As said previously, we are exhibiting at BAPEN this year, which is to be held in Birmingham, so if you are attending then please come along and see us. And, if there are any topics for which we can arrange further symposia looking forward to 2018 then please let us know – we would like to attract as many pharmacists as possible to the annual Conference.