Core Groups Updates

Jutta Köglmeier, NIFWG Chair of BSPGHAN

Email: Jutta.Koeglmeier@gosh.nhs.uk

Website: www.bspghan.org.uk

Meetings 2019

The first meeting in 2019 took place during the annual BSPGHAN winter meeting in Oxford on 24th January 2019 and the second meeting on 8th April 2019 at Great Ormond Street Hospital.

Don't miss:

BAPEN Joint BSPGHAN/BPNG symposium on neonatal, paediatric PN 26th November 2019 ICC Belfast – see BAPEN Conference for more information.

e-BANS

Most centres in England, apart from three (13/16 Blueteq centres), have contributed data to e-BANS.

Akshay Batra is stepping down from his position as Chair of e-BANS as he has taken over his new role as Chair of the NIFWG from Jutta Köglmeier at the end of March 2019.

Julian Thomas, previous Secretary and Tony Wiskin, regional deputy lead, will chair e-BANS together instead, until a new chair has been elected.

Unfortunately, Enda Smyth, former e-BANS administrator had to resign for personal reasons. Rachel Russell, Nutrition Nurse Specialist at Southampton Children’s Hospital, has been appointed as new administrator and started her new post. The administrator’s salary is currently paid for by a BSPGHAN innovation grant.

Akshay Batra has sent a report to update the BSPGHAN council how the innovation grant was used and a future application for a second grant is being considered.

BAPEN

Planning of the 2019 BAPEN paediatric symposium, taking place in Belfast, has already started and the date set for 26th November. This year’s symposium will be jointly held with BPNG and dedicated to neonatal, paediatric and adolescent nutrition.

BAPEN membership for BSPGHAN members is now free and several BSPGHAN members have already made use of this opportunity.

Allied Health Groups

Pharmacy

BPNG (British Pharmacy Nutrition Group): The revised National Framework for home PN has been extended from 1.4.2018 to 31.3.2020.

Dietitians

Lynn Hagin has taken over from Joan Gavin who had to resign from her role on the NIFWG for personal reasons. Tracey Johnson’s term will come to an end in 2019. Rachel Wood, specialist dietitian at Royal Manchester Children’s Hospital will replace her.

Nutrition nurses

Angela Cole was welcomed into the NIFWG as CNS representative. The nutrition nurses have now established a network. The first network meeting was very successful and attended by most UK paediatric nutrition nurses.

BIFA

Recent Top Tips article was published within In Touch: Managing children receiving long-term parenteral nutrition (Julian Thomas, Theo Wong). The group is aiming for one Top Tips article per year. The topic of successful transition planned as the next one: Top Tips for Transition.

There is a plan to have a joint paediatric and adult BIFA day after the last very successful meeting in 2017. Potential topics include transition, the changing face of adult IF and the difference in the approach and management of adult and paediatric IF.

Research, training and current/future projects

• Members of the NIFWG have taken part in the European wide CVC survey. The outcome of the survey has been published in JPGN.
• Guidelines for the diagnosis and management of intestinal failure in childhood: If guideline meetings took place on 15th November and 8th April 2019 in London. The guidelines are now written in draft form and due to be finalised soon.
• The development of a decision-making tree for feeding neuro-disabled children with deteriorating intestinal function in conjunction with RCPCH.
• Guidelines for the use of blenderised diets in children.
• Recommendations for the best method to wean children from intravenous to enteral nutrition.
• National survey on jejunal feeding practices in children across the UK.
• Long-term outcome of paediatric IF in the UK (last 30 years).

New NIFWG Chair

Jutta Köglmeier has finished her three years as Chair of the NIFWG in January 2019 and handed over to the next Chair Akshay Batra in March 2019.

The members of the NIFWG have agreed that a separate role for a BAPEN representative on the working group should be created. So far, the chair has represented the NIFWG both on BSPGHAN and BAPEN council. The new BAPEN representative will take over this role and report to the NIFWG Chair. The NIFWG voted for Jutta Köglmeier to take up this role, which she did in April 2019.

Kate Hall, PENG Chair

Email: communications.peng@bda.uk.com

Website: www.peng.org.uk

Twitter: @PENGDT

PENG colleagues involved in the PENG Clinical Update Course have just returned from a successful course, which ran at the end of June. The feedback has been amazing and the experiences of those who won a free place at this year’s course are shared in the Summer edition of the PENG Newsletter. For those BAPEN members who are also PENG members, please click here to find details on how to enter the prize draw to win one of the free PENG Clinical Update Course 2020 places. The prize draw closes on 13th September 2019.

PENG were proud to be shortlisted for the BDA Specialist Group of the Year Award in June, and it’s all thanks to PENG members and the PENG Committee, and all the work you all do, that helped support our application. Congratulations to Carole-Anne Fleming who was awarded the BDA Ibex Award at the June BDA Awards evening. This prestigious award is for those dietitians who have gone above and beyond and helped make a difference to the dietetic community and patient nutritional care.

This October 2nd marks the PENG Study Day, which this year is focusing on Home Enteral Feeding and the day’s programme, although packed, allows for workshop time and sharing best practice – with the patient being at the centre. Click here for more information and details on how to book your place.

Survey, survey, survey… this is what it will be for PENG members from now until the year end as we need to hear from PENG members to help us plan for 2020 and prioritise the workflows accordingly. The results of all will be revealed at the 2019 PENG AGM, which takes place at the BAPEN Conference in Belfast on 27th November, so please do remember to book your flights and accommodation early! We have had a fantastic response to the PENG Award this year and look forward to hearing to officially presenting and hearing from the winners at the PENG AGM! Meanwhile, thank you to all those who applied for the PENG Award this year.

To keep up-to-date with what is happening, please visit: www.peng.org.uk and follow us @PENGDT

Carolyn Wheatley, PINNT Chair

Email: comms@pinnt.com

Website: http://pinnt.com

Facebook: PINNTcharity

Twitter: @pinntcharity

We can hardly believe that it’s been two years since we celebrated PINNT’s 30th anniversary! The PINNT team has expanded and we continue to update and improve our services for all our members. We’ve just completed another very successful HAN (Home Artificial Nutrition) week – our seventh HAN week in fact - which took place from 5th to 11th August 2019. HAN week is dedicated to raising awareness of the needs of those who live with artificial nutrition. This year PINNT celebrated individuality, with the theme: ‘This is Me’ - recognising that people come in all different shapes and sizes with different histories and personalities. ‘This is Me’ focused on the value of celebrating being yourself and not conforming to stereotypes of idealised beauty or lifestyles.

PINNT has also launched a new booklet, the first of a three-part series with a focus on paediatrics plus there are new patient stories available to read on the PINNT website – www.pinnt.com

PINNT is looking forward to another busy and thriving year ahead. The team values all the generous donations and support that help us to continue the valuable work which we do on behalf of all people in the UK who live with HAN.