Carolyn Wheatley, PINNT Chair

Email: comms@pinnt.com

Website: www.pinnt.com

Facebook: @PINNTcharity

Twitter: @pinntcharity

Instagram: @pinntcharity

Address: PO Box 3126, Christchurch, Dorset BH23 2XS

Telephone: 020 3004 6193

PINNT Autumn Update

Wow! We had an amazing Home Artificial Nutrition (HAN) Awareness week back in August. Thank you for your support. We need to main a focus on those who are dependent on HAN – not just during an awareness campaign or a problem – 365 days a year.

Save the dates

HAN Week 2021 will be 1-7 August, 2022.

In 2022 PINNT will be marking 35 years. We need to consider carefully to best way to make this milestone. We continue to support our members, welcome news one and try to support and advocate for them as best we can.

New & updated resources

We are now sending out all the new resources launched during HAN Week.

PINNT was delighted to be present at the Canadian Patient Parenteral & Enteral Nutrition Alliance (CPPENA) inaugural meeting early October. PINNT’s chair offered some hints and tips as they build their network, and we look forward to staying connected!

PINNT membership

Membership is free to people on HAN, their friends and family, as well as interested parties, which includes healthcare professionals.

You can sign up here: https://pinnt.com/Membership.aspx

Corporate membership is also available upon request, please email: comms@pinnt.com

Kate Hall, PENG Chair

Email: communications.peng@bda.uk.com

Website: www.peng.org.uk

Twitter: @BDA_PENG

This month was the PENG AGM where we reflected upon 2021. Our new PENG logo will also launch on 9 November, so look out for this on future communications from PENG and on the website. We have continued with our webinar series, and in September the webinar focused on dietetic outcomes in nutrition support and following the PENG AGM webinar there was the opportunity to hear from the 2021 PENG Award winners who shared their winning abstracts and answered questions posed to them during the panel session (and thank you to the supporters of the PENG Award – Abbott, Fresenius Kabi and Nutricia). If you have missed any of the PENG webinars you can watch the videos on the PENG website: www.peng.org.uk/education-research/peng-study-day.php

The Virtual HEF group continues to grow and has regular discussions about a range of home enteral feeding related topics. We are keen to grow the multidisciplinary team members on the group so please share the link to join the group with your local medical, nursing and AHP colleagues: www.peng.org.uk/hcp-forums/hef-group.php

A virtual version of the PENG Clinical Update Course (www.bda.uk.com/ems-event-calendar/peng-clinical-update-course.html) is also being held this month, from which we look forward to hearing the feedback, but you will be able see more on social media while the course is taking place. In December there will be the BDA Research Symposium and PENG are hosting the ‘Nutrition Support’ stream. More information can be found at: www.bda.uk.com/events/upcoming-events/research-symposium.html

PENG are currently looking into composing standardised competencies for formulating and monitoring patients on parenteral nutrition. If you are a PENG member you will soon be able to tell us what you would like from national parenteral nutrition competencies for dietitians; so look out for the PENG questionnaire coming soon, we would appreciate your valuable feedback.

Lastly, having advertised new opportunities to join the PENG Committee leading up to the AGM, we hope to welcome some new members in the coming weeks. However, if you are a PENG member and would like to get more involved with PENG or interested in joining us on the committee, please do get in touch: peng@bda.uk.com, and keep a watch on our communication channels – social media, website, members newsletter to see the latest activities and updates.

Georgie Adams, NNNG Communications Officer

Email: nationalnursesnutritiongroup@gmail.com

Website: www.nnng.org.uk

Twitter: @NNNGUK

A Time to Look Back and Share

The past two years have been incredibly challenging for health professionals, the health and care community and wider UK and global population. We should be proud that as an allied health professional (AHP) community we were able to play such an important role in the efforts to face the challenges of COVID-19, and moved by the sheer dedication, and contribution of AHPs across the UK. From small steps to big efforts, every person’s contribution counts.

The NNNG had a busy start to September 2021, with memories of the school holidays now long gone! Our 2021 virtual conference took place from 20-24 September, in the evenings. We are grateful to our conference partner, Mark Allen, and the fantastic AV Team, AZTEC, who enabled the committee to present, chair, and provide a Q&A panel with panache and style – what an experience for us all!

A bespoke platform provided a virtual nutrition village, with two presentations and an industry case review each evening. A huge team effort was made this year, providing international interest and registration. To have all four UK nations represented on screen, reinforced the importance of a National Nurses Nutrition Group across the country.

Highlights from the week

Keynote address: Human Factors & Patient Safety

Professor Peter Brennan, consultant surgeon with an interest in head and neck cancer, working in Portsmouth. Peter’s extensive human factors work, and collaborations with airline pilots, UK National Air Traffic Services and the Red Arrows has resulted in many changes to practice, better team working, and reduced hierarchy, with patient safety improvements across medical specialties and healthcare.

Naomi Ledwich, specialist physiotherapist at the University Hospital Southampton for Inpatient Intestinal Failure (IF) and the need for a specialist therapy intervention; promoting surgery and discharge optimisation. With the introduction of a Specialist IF physiotherapy role and use of outcome measures.

Allison McIntyre, Clinical Nurse Manager and Tanya Holdstock, Specialist Dietitian, Devon Partnership NHS Trust. ‘Nasogastric tube feeding alongside a restraint intervention: How we NG feed individuals with an eating disorder has significantly changed.’ The session reflects on the changes observed and how this has impacted on nutrition treatment and NG feeding plans for the formal and informal client cohort.

Carolyn Wheatley, Chair of PINNT: ‘Making a Connection’. Key aspects of the presentation included: support & advocacy, education, and an information resource for patients, associate members, and industry service providers. Providing practical solutions for day-to-day living with HAN and a bespoke support network to help each person overcome their challenges and achieve their goals. Partnering with industry to share experiences and work towards making life better for those on HAN.

Professor Alison Leary, Chair of Healthcare & Workforce Modelling, London Southbank University: Alison primarily undertakes research but also teaches on a range of postgraduate programmes, and supervises postgraduate research students at LSBU: ‘Making the invisible, visible’.

How to make others understand the value of specialist expert nursing practice and its benefits to patients and employers, using the Apollo Nursing Resource website – www.apollonursingresource.com

Rachel Russell, paediatric nurse with more than eight years’ experience working within paediatric gastroenterology, and more recently within paediatric nutrition: ‘Complex safeguarding – the paediatric PNCNS.’

This session provided an overview of the complexities that a paediatric nutrition CNS xcan face when managing children and families with both complex nutritional needs and safeguarding concerns, in particular ‘red flags’ and risk factors which lead to escalated care.

On demand sessions will be available for all health professionals to access as a session pick and mix: https://nnng.org.uk/2021/09/nnng-conference-2021/. The conference is CPD-certified and eligible for 11 CPD hours on completion.

Jutta Köglmeier, BAPEN representative of the Nutrition and Intestinal Failure Working group (NIFWG) of BSPGHAN

Email: Jutta.Koeglmeier@gosh.nhs.uk

Website: www.bspghan.org.uk

MEMBERS: • Akshay Batra (Chair) • Jutta Köglmeier (BAPEN representative) • Jemma Cleminson (Trainee BAPEN representative) • Nkem Onyeador (CSAC) • Theo Wong (BIFA) • Lynn Hagin (Dietitian) • Rachel Wood (Dietitian) • Julian Thomas (eBANS Co-Chair) • Elena Cernat (Research) • Tony Wiskin (eBANS regional deputy lead/Co-Chair and research) • Sapthagiri Gantasala (General Paediatrician) • Pamela Cairns (Neonatology) • Venetia Simchowitz (Pharmacy) • Catherine Richards (Surgery) • Jonathan Hind (Hepatology) • James Church (Trainee Rep) • Angela Cole (Clinical Nurse Specialist)

New members:
Elena Cernat: Research representative
James Church: Trainee representative

Nutrition and Intestinal Failure Working Group (NIFWG) of the British Society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN)

Meetings 2021

The NIFWG has met via teams on 23 March and 29 April and a further meeting is planned on 5 November, where the IF guidelines and PINNT survey will be finalised. The next BSPGHAN annual meeting will take place in Birmingham from 26-28 January 2022. The NIFWG will meet during the meeting.

Theo Wong, Jutta Köglmeier, Girish Gupte and Jonathan Hind have organised the first UK joint Intestinal Rehabilitation Meeting (JIRM) on 19 October (virtual platform). The IF rehab teams at Birmingham Children’s Hospital, Great Ormond Street and King’s College invited interested health professionals to this national meeting to discuss difficult paediatric intestinal failure patients. The meeting was well received and attended by 69 health professionals. The JIRM will continue to run three times a year. The next meeting is scheduled for 16 February 2022.

COVID-19

The COVID-19 pandemic remains challenging for the NHS, but children were fortunately not severely affected. Initially children with intestinal failure on home PN were advised to shield during the first COVID-19 lockdown. However, this was later reviewed and the NIFWG members agreed that children on HPN in general do not fall in the clinically extremely vulnerable category. Only a small proportion may be considered vulnerable because of comorbidities and should be assessed by clinicians on a case-by-case basis. COVID-19 vaccination is now available for children from the age of 12 years.

eBANS

Leaving Chair: Akshay Batra • Regional Deputy Lead and Co-Chair: Tony Wiskin Co-Chair: Julian Thomas • Administrator: Rachel Russell, Paediatric Nutrition Nurse Specialist/Southampton.

Tony Wiskin updated the NIFWG on the publication of the eBANS data at the meeting in March. The new database will soon be ready for new patient data to be entered.

BAPEN

The 2021 BAPEN paediatric symposium will focus on the nutrition management of IBD. Unfortunately, once more the BAPEN annual meeting symposium will not go ahead face to face in light of the COVID-19 pandemic. The symposium will hence be held virtually on 1 December.

Three speakers have confirmed their attendance:
Kelsey Jones: Exclusive enteral nutrition and diet in IBD
Anthi Thangarajah: Body composition in children with IBD: impact on health and disease
Konstantinos Gerasimidis: Micronutrient deficiencies in children with IBD: prevention, diagnosis and management.

BAPEN membership for BSPGHAN members is free and several BSPGHAN members have already made use of this opportunity. Jemma Cleminson has joined the NIFWG as trainee BAPEN representative and will work together with Jutta Köglmeier.

PINNT

Angela Cole and Akshay Batra have designed a survey for patients to identify their health and social needs and how PINNT could help patients to achieve them. The questionnaire has been completed and approved by the NIFWG members.

BIFA

BSGPHAN representative: Theo Wong
Paediatric Top Tips publication: Managing Children Receiving Long-Term Parenteral Nutrition (Julian Thomas, Theo Wong).
Further topics are planned.

Frontline Gastroenterology

BSPGHAN has consolidated an affiliation with Frontline Gastroenterology. BSPGHAN members will receive free access to the online publication as a benefit of membership and poster abstracts from the BSPGHAN annual meeting will be published in the journal.

Allied Health Groups

Pharmacy

Susan Hill and Venetia Simchowitz continue to represent the NIFWG on the National Framework for home PN. Amanda Simmance, the mother of a young GOSH home PN patient, has agreed to become the parent representative.

Dietitians

Rachel Wood is unfortunately no longer able to represent the paediatric dietitians on the NIFWG. Lynn Hagin remains the dietitian on the group.

Nutrition Nurses

Angela Cole is representing the paediatric nutrition nurses on the working group. The nutrition nurses have now an established network. Angela has made a poster for the safe use of enteral devices. The group has commented on the contents of the poster. An update is awaited.

Publications planned for submission in 2021

• National intestinal failure rehabilitation practice guidelines
• Consensus guidelines for the management of gastrointestinal dystonia in children and young people with neurodisability
• Survey on no gut syndrome
• PINNT patient survey.