Core Groups Updates

Jutta Köglmeier, NIFWG Chair of BSPGHAN

Email: Jutta.Koeglmeier@gosh.nhs.uk

Website: www.bspghan.org.uk

Meetings 2019

During 2019, the NIFWG met during the annual BSPGHAN winter meeting in Oxford on 24th January 2019, on 8th April 2019 at Great Ormond Street Hospital and on 19th September 2019 in Bristol ahead of the 5th National Intestinal Failure Working Group Study Day.

The study day was extremely well attended and feedback good. Registration was free due to secured industry sponsorship and support from BSPGHAN. The programme was divided into four blocks. The first session focused on intestinal failure management on the neonatal unit, including medical management, approach of the surgical infant and ethical considerations. The second block was dedicated to children with congenital diarrhoea and how to discharge them safely on PN. The afternoon included complications and how to wean from PN.

The next meeting in 2020 will take place in Cambridge and will be organised by Camilla Salvestrini and her team.

Read the BAPEN Conference Report for highlights from the joint BSPGHAN/BPNG symposium on Nutrition support in infants and children neonatal, paediatric PN.

e-BANS

Most paediatric IF centres in England apart from three (13/16 Blueteq centres) have contributed data to e-BANS. The data was presented at the last BSPGHAN annual meeting in January and will be published in a peer reviewed journal in due course.

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 (end of March 2019). Whilst no new chair has been appointed Julian Thomas, previous secretary, and Tony Wiskin, regional deputy lead chair e-BANS, are working together with support from Aksay Batra.

Rachel Russell, Nutrition Nurse Specialist at Southampton Children’s Hospital has been appointed as administrator and started her new post. As e-BANS is closing Rachel has contacted all paediatric centres to make sure the current data is up-to-date.

The NIFWG members have been discussing the format of the new database, which is currently being finalised.

The administrator’s salary is currently paid for by a BSPGHAN innovation grant. Akshay Batra has sent a report to update the BSPGHAN council on how the innovation grant was used and a future application for a second grant is being considered. The NIFWG members are also seeking alternative funding avenues.

BAPEN

BAPEN paediatric symposium – 26th November 2019 in Belfast – Nutrition support in infants and children.

This symposium was jointly organised by BSPGHAN and BPNG and focused on the management of parenteral nutrition in infants and children from birth to adolescence. Three speakers were invited.

The first talk given by Alia Hussain, Senior Clinical Pharmacist at University College London Hospital focused on the issues around the implementation of standard bags on neonatal units in London.

The second lecture was given by Venetia Simchowitz, Parenteral Nutrition Consultant at Great Ormond Street Hospital London. She discussed parenteral nutrition regimes for infants and children in the hospital setting and the implications of the updated ESPGHAN PN guidelines published in 2018.

The final speaker was Prof Andrew Gennery, Consultant in Paediatric Immunology and HSCT at Newcastle University Hospital. He spoke about how to manage fluid and nutrient requirements of a child with complex health needs after a bone marrow transplantation.

Topics for the 2020 BAPEN paediatric symposium will be discussed during the next NIFWG meeting on 24th January 2020 in Brighton.

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):
Revised National Framework for home PN has been extended from 1.4.2018 to 31.3.2020. The last framework meeting took place on the 20th November 2019 and was attended by Susan Hill and Venetia Simchowitz. The tender is in progress.

The 2018 ESPGHAN PN guidelines have now been published.

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 has come to an end in 2019. Rachel Wood, specialist dietitian at Royal Manchester Children’s Hospital has replaced her.

Nutrition nurses

Angela Cole was welcomed into the NIFWG as CNS representative. The nutrition nurses have now established a network. The 2nd network meeting took place on 2nd October in London. The study day had industry sponsorship and registration was free. The day was again very successful and attended by most UK paediatric nutrition nurses. Topics included the surgical and medical management of short bowel syndrome, congenital enteropathies, motility disorders and home parenteral nutrition.

BIFA

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.

Update on HPN – forward planning

Calea was found to have some deficiencies at the last MHRA inspection which led to reduction in compounding facilities.

As a result, there was a gap in service provision which impacted delivery of HPN to patients with Calea. Even though no patients under 16 years had their compounding slot withdrawn, there were delayed deliveries for a significant number of patients. For some paediatric centres, things have now stabilised but there are ongoing concerns. This highlights the vulnerability of this group of patients who are completely dependent on this life sustaining treatment.

The problem was not temporary and has adversely affected the compounding capacity in the country affecting discharge of patients home on PN.

Future planning

NHS England has set up a clinic cell with professionals from different centres and specialities who would advise commissioning of compounded HPN.

4-5 paediatric HPN compounding slots have been approved.

• 1 weighted point for children <16 years
• 1 weighted point for high output
• 1 weighted point for additional clinical information
• No impact of social circumstances
• Clinicians are encouraged to provide as much clinical information as possible
• Geography matters.

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: The guidelines are now written in draft form and due to be finalised in January 2020 and then published on BSPGHAN and BAPEN website
• Consensus Guidelines on feed induced dystonia: Andrew Barclay and Sue Protheroe met with RCPCH to receive RCPCH endorsement. College supporting Delphi process
• Guidelines for the use of blenderised diets in children: Jutta Koeglmeier is leading on an ESPGHAN position paper jointly written by the Committee of Nutrition and Allied Health Group
• Nutrition modules as an online resource for trainees: Harween Dogra
• National survey on jejunal feeding practices in children across the UK
• Long-term outcome of paediatric IF in the UK (last 30 years).

Kate Hall, PENG Chair

Email: communications.peng@bda.uk.com

Website: www.peng.org.uk

Twitter: @PENGDT

Following our successful PENG Study Day, held in October, feedback was shared in our latest members e-newsletter (PENlines) but it can also be found on the PENG website – click here. For an overview of what was featured in the last issue of PENlines, click here.

Surveys

The recent PN survey that was carried out at the end of last year has been shared and compared to a similar survey which was carried out a number of years ago. The results really demonstrate how far we have come and we hope to share this more widely later this year as we better understand the results.

In the coming weeks we will be providing feedback from the water survey and along with asking PENG members for their feedback through the PENG membership survey, which will help us in planning for 2020 and beyond. PENG MEMBERS: Please look out for the membership survey as we would like your feedback to help us fine tune activities and priorities for the next membership year and beyond.

PENG Committee

We will also soon be confirming the PENG Committee members for this next term, as sadly some of the current Committee members will be stepping down. However, I am pleased to say that they will not be far away and will be providing support for some of those new to the Committee.

Awards

The 2019 PENG Award winners’ presentations took place at the PENG AGM, held at the BAPEN conference. We will be sharing their winning abstracts on the website and announcing what the Award will look like for 2020 – so watch this space!

Dates for your diary

At the time of writing, we are yet to have our first committee meeting of 2020 and are currently in the planning stages for the membership year 20/21 but what we can share are some key dates for your diary:

• PENG 2020 Study Day – 6th October 2020 – Birmingham
• 2020 Clinical Update Course – June 2020 – click here for more information and to register.

Finally, I would like to thank all of the PENG Committee for all of their support and commitment to ensuring that PENG continues to support dietitians who work in the area of nutrition support, and all of those involved with the PENG Pocket Guide to Clinical Nutrition (especially the editors Vera Todorovic and Bruno Mafrici). And, thank you to all PENG members for your support too and contributions.

Carolyn Wheatley, PINNT Chair

Email: comms@pinnt.com

Website: http://pinnt.com

Facebook: PINNTcharity

Twitter: @pinntcharity

Recent productions include two new booklets in collaboration with Angela Cole, Clinical Nurse Specialist for Children with Intestinal Failure. The first booklet is aimed at patients: Transition for young people with intestinal failure – The what, the why, the where and the how? The second booklet on transition is the self-explanatory titled: Information for Healthcare Professionals. The third booklet in the transition-trilogy is due out in the spring.

PINNT has also now printed a booklet written by Bethia Manson, called ‘Living with artificial nutrition’, which includes members’ experiences and thoughts. It covers a range of subjects, including sex and relationships, low self-esteem and the emotional impact of living with artificial nutrition.

PINNT members can apply for a copy of each booklet free of charge. Individual healthcare professionals and centres can make requests for bulk copies with a small charge to cover postage and packing. Click here for more information.

In 2020, PINNT’s annual Home Artificial Nutrition (HAN) Week, will take place from 3-9 August. PINNT plans to continue with the 2019 theme of ‘This is Me’, and in 2020 we’ll be looking at this from different perspectives.

PINNT membership is free to patients, carers and close relatives of patients and to associated healthcare professionals. It provides a range of benefits such as access to the PINNT website where members can download a variety of helpful information; access to the private Facebook group where patients can chat and share information freely. Plus, access to resources including local groups, the PINNT Medical Tag (for feeding pump verification), Safety Posters and more. We recommend that healthcare professionals highlight membership of PINNT to patients who may be feeling isolated and overwhelmed. We produce flyers for healthcare professionals to offer patients with information on the benefits PINNT offers and details of how to join.

Georgie Adams, NNNG Communications Officer

Email: nationalnursesnutritiongroup@gmail.com

Website: www.nnng.org.uk

Twitter: @NNNGUK

The NNNG welcomes 2020 with a bang!

2020 marks the 200th anniversary of the birth of one of the founders of modern nursing, Florence Nightingale, and the World Health Assembly has designated 2020 the International Year of the Nurse and the Midwife. An exciting Year for Nurses and Midwives and one to be shared with our health professional colleagues. The NNNG will be marking this fantastic milestone at this Year’s NNNG Conference 2020 ‘Year of the Nurse: Nursing and Nutritional Care – complex, diverse, essential’, which will be held on 6th & 7th July 2020 in York.

2020 NNNG Conference – 6th & 7th July 2020, The Principle, York – Why and who should attend

The conference will look at the diverse range of nutrition roles within health in the UK. We will explore multi-disciplinary working and the importance of being part of a team. We will focus on clinical procedures and the ethical debates underpinning the interventions available.

The NNNG Conference will act as a resource for those new to role in the nutrition world and those who want to see how other centres address the many clinical challenges and ethical dilemmas faced daily in the NHS. Shared learning within acute, community, industry and private healthcare will offer those attending with the opportunity to immerse them-selves in critical thinking, while recognising the importance of team harmony.

Early bird rates are now available and for further information and to register, click here.

Submit your story

Join #YearoftheNurseandMidwife celebrations and help showcase our amazing, diverse #teamCNO nursing & midwifery workforce.

Whether you work in acute, community or social care, submit your story and share your experience of being part of our amazing professions – click here for more information.

Updating nutrition policies, procedures or guidelines?

Don’t forget to amend the training and education sections to recognise the changes made to Student Nurse Education, with the introduction of Band 4 roles:

• Realising professionalism: Standards for education and training. Part 2: Standards for student supervision and assessment (17 May 2018)

Advanced Critical Care Practice

If you are you involved with with the consultation, discussion and planning for Advanced Critical Care Practice (ACCP) roles in your trust, or thinking of applying for an ACCP role, take a look at:

• Advanced critical care practitioner
• Advanced clinical practice

Presenting, teaching OR explaining refeeding syndrome?

Take a look at this article by De Silva A, Nightingale JMD recently published (Dec 2019) in Frontline Gastroenterology: Refeeding Syndrome: Physiological background and practical management.

Ms Fiona Leitch, BAPEN Medical Secretary

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

BAPEN Medical has continued to flourish under the chairmanship of Stephen Lewis. It is with great thanks from all that he demits office and we have welcomed Philip Allan to this Chairman role.

The BAPEN Medical Teaching Day was very well-attended by delegates from a broad range of disciplines (Dietitians, Pharmacists, Nurses, Doctors (Gastroenterology, ICU, Chemical Pathology, Surgery) and industry). BAPEN Medical hosted two symposia during the main BAPEN 2019 conference, again to packed audiences and a lot of discussion generated. The 2019 Powell Tuck prize was awarded to: Dr J Willsmore from St Mark’s Hospital for best poster presented by a doctor-in-training on the topic of ‘Endovascular interventions for catheter-associated venous thrombosis in patients on home parenteral nutrition’. We look forward to seeing the entries for the 2020 competition.

Membership of BAPEN Medical is at the highest it’s been for some years (over 160 at present), with particular expansion in trainee members. Trainees now benefit from free membership of BAPEN Medical and also the BAPEN Medical Trainees group. The BAPEN Medical trainees have a strong presence on social media, especially Twitter – check them out!

BAPEN Medical constantly seek to engage with other related groups and organisations to promote excellence in medical nutritional care; we are currently engaged in writing Guidelines with BSG on ‘How to set up a PEG service’, and updating enteral tube guidance. We also have strong links with BIFA and the Small Bowel group of BSG.