InTouch Newsletter

Core Groups Updates

NIFWG of BSPGHAN

Jutta Köglmeier, NIFWG Chair of BSPGHAN

Meetings 2018

The NIFWG has met on January at the BSPGHAN annual winter meeting in Leeds on 25th January 2018, at Great Ormond Street Hospital in London on 17th May and at the NITE meeting on 28th/29th June in Birmingham to celebrate 25 years of transplantation at Birmingham Children’s Hospital also Sue Beath’s retirement and recognition of her work. Planned meetings include:

4th National Complex Nutrition, Intestinal Failure Rehabilitation and Transplant Network Meeting
6th/7th September 2018, Edinburgh
Intestinal Failure Rehabilitation Guideline Meeting
15th November 2018, London
BAPEN Paediatric Symposium on Sugar
21st November 2018, Harrogate International Centre.

e-BANS

Chair: Akshay Batra; Regional deputy lead: Tony Wiskin; Secretary: Julian Thomas; Administrator: Enda Smyth

A major focus of the group is 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. The NIFWG has managed to secure a BSPGHAN innovation grant to fund the much-required admin support and Enda Smyth was successfully appointed into the post.

Jonathan Hind presented on the epidemiology of intestinal failure in children in the UK, and the evolution of the paediatric e-BANS registry on behalf of the group at the CIRTA meeting in New York on 30th June 2017.

National commissioning of IF services in the UK: Previous correspondence was sent on behalf of the group did not receive a response. Another letter will be sent to NHS England, but also Jackie Eastwood, chair of the Home PN Framework (signatures include Chairs of NIFWG, paediatric e-BANS, BSPGHAN President, BAPEN President).

BAPEN

The bond with BAPEN is continuing to grow stronger. The joint paediatric/adult intestinal failure rehabilitation symposium on 20th November 2017 had a paediatric and adult speaker for each presentation. The programme was well received and included exciting topics relevant to both paediatric and adult intestinal rehabilitation teams:

This year’s BAPEN paediatric symposium on 21st November 2018 in Harrogate will be dedicated to ‘Sugar’.

Three talks are planned and a flyer has been circulated:

Health impact of sugars in children and adults
Definition and labelling issues
How to reduce sugar – do taxes work?

NIFWG of BSPGHAN, as Core Group of BAPEN, are now entitled to free BAPEN membership.

Allied Health Groups

Pharmacy

BPNG (British Pharmacy Nutrition Group):

Revised National Framework for Home PN has been extended from 01.04.18 to 31.03.20
Venetia Simchowitz continues to represent paediatric pharmacists on the Framework
Blueteq forms have now been in use for some time. Home parenteral nutrition cannot be requested without a completed Blueteq form (NHS England – Initial Funding Application for HPN for children (under 18s) needing parenteral nutrition)
Angela Cole continues in her role as the Paediatric Nursing Representative and Susan Hill as the Paediatric Gastroenterologist.

Standard bags – Anthony Lewis, Head Pharmacist in Cardiff, is leading on the group:

Guidelines are to be written on how to use standard bags and will be sent to the big manufactures to tender for these bags
No progress has however been made in the last 6 months
GOSH used a regimen outsourced to one of the companies when GOSH shut the compounding unit last year
4 regimens based on ESGPHAN guidelines according to weight:

<10 kg
10 to 20 kg
0 to 30 kg
above 30 kg.

The updated ESPGHAN guidelines are about to be published and are available online ahead of print:

Hold up in publishing the new guidelines: PEPERNET study – neonatology/Paediatricians/intensivists disagreement that strong recommendations made should depend on one paper
Amino acid use on intensive case is still a debate
PN to be withheld for the first week of admission to ICU
The chapter on glucose prescribing has reduced requirements compared to before.

Members of the NIFWG have taken part in the European wide CVC survey:

The outcome of the survey has been analysed and will be included in the ESGPHAN PN guidelines and will also be published separately.

Dietitians

Blenderised diets continue to attract great attention at present. The BSPGHAN Allied health professionals group dietitians are writing a position paper which will be published on the BSPGHAN website. The associates committee has met with the British Dietetic Association and they are now working together to develop guidelines about decision making.

A further aim of the group is to put together a consensus document on weaning from artificial/tube weaning. The work is ongoing.

A six-centre (multi-centre) trial looking into the use of blenderised diets is planned and has been sent to HTA coordinated by Jane Code from Coventry (currently awaiting HTA reward and supposed to start in October 2018).

Nutrition nurses

Angela Cole was welcomed into the NIFWG as CNS representative.

The nutrition nurses continue to work on a number of projects:

Standardisation of nursing practices in PN and nurse/patient ratio for home PN children
Equipment and methods used for connecting and disconnecting PN at home. A wide variety of equipment has been requested under the National home PN Framework.

BIFA

BSGPHAN representative: Theo Wong

Recent top tips publication: Managing children receiving long-term parenteral nutrition (Julian Thomas, Theo Wong. The group is aiming for one top tip letter/year – e.g. successful transition as the next one: top tips for transition

Research, training and current/future projects:

Guidelines for the diagnosis and management of intestinal failure in childhood – guideline meeting planned for 15th November 2018 in London to finalise guidelines
The development of a decision-making tree for feeding neuro-disabled children with deteriorating intestinal function in conjunction with the Royal College of Paediatrics
Develop a practical ethical framework for decision making in severe neonatal intestinal failure
Guidelines for the use of blenderised diets in children
Recommendations for the best method to wean children from intravenous to enteral nutrition
Long-term outcome of paediatric intestinal failure in the UK (last 3 decades)
National survey on jejunal feeding practices in children across the UK.

BAPEN Medical

Dr Stephen Lewis, BAPEN Medical Chair

Email: StephenLewis1@nhs.net

Website: www.bapen.org.uk/about-bapen/bapen-core-groups/bapen-medical

We are all set for the conference in November at Harrogate. In particular our study day on Monday 21st November (the day before the main conference). The day will provide a ‘state of the art’ update on nutritional management at the extremes of human physiology.

We have some excellent speakers who will cover a range of subjects including the inpatient management of anorexia nervosa, vitamin & micronutrient deficiency, nutritional challenges in refuges, sarcopenic obesity, the nutritional management of perioperative complications, the nutritional management of critically ill patients. Topics will be covered using formal talks and interactive case presentations by a variety of doctors, dieticians and nurse specialists within the field. I am sure the day will appeal to people to anyone with an interest in clinical nutrition and will be a great success.

In addition, we have secured Charles Spence and Alan Mackie for our symposium on Gastrophysics in the main BAPEN meeting. They will explore the science of eating and how our senses affect our perception of hunger and what we eat. Our other session will be on prehabilitation – getting fit for surgery. Nutrition within prehabilitation is part of a multimodal approach to optimise patients before their surgery and improve outcomes.

PENG

Kate Hall, PENG Chair

Email: communications.peng@bda.uk.com

Website: www.peng.org.uk

Twitter: @PENGDT

The PENG Clinical Update Tutor team ran a very successful course in June and feedback from some of those who participated has been amazing. If you are interested in perhaps registering for next year's course the registration will be open in the Autumn but you can find out more about what the course entails from some of those who won a free place onto this year's course because they have written about their experiences in the Summer issue of e-PENlines.

Our annual competition where PENG members can enter to win one of five free places at the PENG Clinical Update Course 2019 soon closes – deadline: Friday 7th September 2018 – for more information click here.

The PENG Award 2018 submission date has now passed. We received a huge number of applications this year. The judges are currently assessing the applications and we hope to inform the lucky winners in early September.

Parenteral Nutrition is the focus for this year's PENG Annual Study Day, which will be held on 26th September 2018 in Birmingham. Places are filling fast and we urge dietitians to register for what promises to be a really insightful and interactive day. For further details click here.

The updated version of the Pocket Guide to Clinical Nutrition is on target for publishing in the next couple of months. Some of you may have already heard from some of the authors about the new Pocket Guide but, if not, for further information click here.