Core Groups Updates

Carolyn Wheatley, PINNT Chair

Email: comms@pinnt.com

Website: www.pinnt.com

Facebook: PINNTcharity

Twitter: @pinntcharity

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

Telephone: 020 3004 6193

PINNT: A patient and carers’ association offering mutual support and understanding, along with providing an advocacy role for people on home artificial nutrition (HAN).

If you support people on home artificial nutrition, why not suggest they contact PINNT? They can seek advice and guidance from people already receiving the treatment. Those already living with it have genuine insight into the challenges of day-to-day life on home artificial nutrition. Plus, PINNT offers several resources including a safe forum to meet others virtually (due to the current situation with the pandemic). We hope to return to face-to-face meetings at some point in the future.

There are three main activities within PINNT:

• Patient support & advocacy: Our aim is to offer support, empathy and contact to patients who require artificial nutrition at home whether it is via enteral, parenteral and/or oral nutritional supplements. We also represent our members in relevant ways to the appropriate bodies to convey messages and information, as necessary.
• Education: Showcasing life on HAN from the patient’s/carer’s/family perspective. Using information gathered from members to enhance services and products for HAN users and to raise awareness – nationally – of those who need artificial nutrition.
• Information resource: PINNT works with professional bodies, manufacturers, policy makers, service providers to give insight, with the aim of enhancing and developing services, products, and information for those on home artificial nutrition.

PINNT has useful resources to support members, these are free to members.

The launch of our new campaign:
‘Let’s Talk about HAN’.

As we reflect on the past months, it’s clear to see there has been an overwhelming stream of gloomy news, some has focused on those who – during the pandemic – are classed as clinically extremely vulnerable (CEV). The pandemic has impacted everyone, not just those with known illnesses, medical treatments and those classed as CEV. PINNT believes that it’s time to start a positive conversation, so we will be sharing stories, activities and asking questions over the coming months about home artificial nutrition (HAN).

There is good news to share about life-saving artificial nutrition and the people who receive it, those who prescribe it, those who produce and deliver it, and those involved in manufacturing the equipment we need to receive and have artificial nutrition.

Our campaign is the precursor to our annual event, Home Artificial Nutrition (HAN) Week, 2-8 August 2021.

We welcome a conversation with you; other dedicated people who want to raise a topic or issue related to HAN.

One of our members, Anna, shared her journey to home parenteral nutrition which can be found here.

Come and talk to us; you can phone us or send us an email, contact details above.

Home Artificial Nutrition (HAN) Week 2021

Save the dates: 2 – 8 August 2021.

 

 

 

 

 

 

 

 

 

PINNT membership

Membership is free to people on HAN, friends and family as well as interested parties. You can sign up via: https://pinnt.com/Membership.aspx

Corporate membership is available upon request via: comms@pinnt.com

Kate Hall, PENG Chair

Email: communications.peng@bda.uk.com

Website: www.peng.org.uk

Twitter: @BDA_PENG

As we continue to live in what can only be described as unprecedented times, we want to continue to keep our members informed of all things nutrition support related that may be coming up.

PENG kicked off their 2021 webinar series on 9th February, focusing on the findings of the recent ‘water survey’ (water usage in enteral feeding) – if you want to find out more please get in touch. We have planned regular early evening webinars for 2021, and the next one will be in April when the PENG Award winners (yet to be announced) will be sharing their winning abstracts, so please keep an eye on PENG’s social platform and PENG’s website for more notifications.

The Virtual Home Enteral Feeding Network continues to go from strength-to-strength having found its new home on basecamp in December. If you are interested in joining this virtual community, please click here.

We are also pacing out surveys in 2021 to get feedback to help us develop further resources, including carrying out a parenteral nutrition survey and PENG membership survey to find out directly from PENG members what they would like to hear more about, and what they find more, or less, useful.

This year we are also reviewing the PENG Dietetic Outcomes Toolkit, supporting the PENG Clinical Update Course, which takes place this year in a different and virtual way, so we look forward to sharing our experience with you.

There are lots of ways we will be keeping in touch with PENG members in 2021, aside from via our regular e-newsletter through the BDA platform, email, twitter, website but also now, in 2021, we will also be coming to you from our new quarterly PENG Update slot in CN Magazine!

Take care, stay safe and please get in touch if you want to find out more about PENG, or if you are a dietitian and not yet a member of PENG please click here.

Georgie Adams, NNNG Communications Officer

Email: nationalnursesnutritiongroup@gmail.com

Website: www.nnng.org.uk

Twitter: @NNNGUK

We start 2021 as we finished 2020, busy in the capital and cities throughout the UK – the second variant arrived placing far greater pressure on nurses with significant workforce numbers in isolation or testing positive. Long COVID continues to demonstrate nursing fatigue and exhaustion. The frontline vaccination programme for health workers offers a glimmer of hope at the end of what looks to be a long winter of demands and pressure.

The NNNG committee completed 2020 with its final meeting in December, providing a roundup of its achievements and successes. We remain impressed with the energy and passion found within the nutrition community. With this in mind, we provide the following updates:

1. NNNG Nutrition Week: The webinars went very well – 4768 registrations, 913 logged on across the 5 days and 269 have watched so far on demand, reviews have rated the week at 4.1/5.
2. In December NGPOD partnered with the NNNG to provide a platform for presentation and discussion of its pH aspirate – fibre optic device – trial data across four sites. A summary of key outcomes provided a healthy debate with critique among the nutrition community. The full report expected to publish in the spring. Watch this space. Going forwards we intend to offer and increase our industry partnerships.
3. Media 1 have finished building and transferring information onto the new NNNG website. The NNNG Committee has agreed that the discussion group is to be incorporated into the new website and linked to email addresses. The website will also include something called ‘Stripe’ which will allow people to pay by their debit card without having to set up a PayPal account. A new NNNG email address will also be created as part of the process. We are keen to launch a user-friendly website – in this busy, virtual world of ours, now more than ever we need ease of use and application. Committee members were asked to critique first drafts and proofs. Please bear with us as we move through the new design and features. We want to get this right for our members.
4. Education platform: Educational resources are to be available in the member’s only area of the new website. The NNNG Committee unanimously agreed that this was a key goal for 2021 and that we should start small initially. Our current guidelines will be a good source of education and it was agreed that ‘changing a balloon gastrostomy’ would be the first project. We are looking at multi-media approaches to make for an engaging and enlightening piece of learning and development.
5. AGM – 27/11: A small attendance allowed for a conversational style meeting. Key decisions were made with agreement student nurses and Associate Nurses will be provided with membership entitlement.
6. The NNNG has now appointed its own secretariat, supporting administrative activities and future website management.
7. The NNNG continue to work closely with BAPEN’s Nasogastric Tube Special Interest Group (NGSIG) providing representation at their meetings while developing a subject specialist role. We also contributed to the Healthcare Safety Investigation Branch (HSIB) report, ‘Patient safety risks of nasogastric tube never events’, December 2020. The NNNG put forward practical recommendations for future clinical practice. Report highlights include inviting Health Education England to standardise NG competency training and assessment nationally.

The NNNG start 2021 with a fresh and innovative vision, recognising its focus for the future while managing today’s competing and conflicting NHS demands. Spring/Summer 2021 looks to be in sight. Role modelling professional standards is necessary to overcome and move on from this pandemic.

Stay safe and well.

Jutta Köglmeier, BAPEN Representative of the Nutrition and Intestinal Failure Working group (NIFWG) of British society of Paediatric Gastroenterology, Hepatology and Nutrition (BSPGHAN)

Email: Jutta.Koeglmeier@gosh.nhs.uk

Website: www.bspghan.org.uk

Meetings 2021

In 2020, the NIFWG has met at the annual BSPGHAN winter meeting in Brighton on 31st January 2020 and via zoom on 5th May 2020 and 10th November 2020.

The 7th Complex Nutrition and Intestinal Failure Rehabilitation meeting was supposed to take place in Cambridge, in September 2020, and organised by Camilla Salvestrini and her team. Unfortunately, the meeting could not go ahead in light of the COVID-19 pandemic. The NIFWG is hoping that the meeting will be rescheduled in 2021.

The annual winter meeting was supposed to take place online from 26-28th January. The NIFWG had planned a nutrition session. Unfortunately, the meeting has been cancelled due to the increasing demands on the NHS caused by COVID-19.

The next NIFWG meeting has been arranged for March 2021.

COVID-19

Initially children with intestinal failure on home parenteral nutrition (HPN) 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.

Children with intestinal failure requiring HPN should only continue to shield if they meet one or more of the following criteria:

• primary immunodeficiency or immunodeficiency induced by drugs as part of their therapy (as in group A)
• with other significant conditions (as in group A) or other organ involvement (renal, haematology, cardiac, GI, respiratory, diabetes mellitus, etc.)
• social cofactors (e.g. heavily reliant on support from healthcare professionals/ carers)’.

BAPEN

The 2020 BAPEN paediatric symposium was supposed to focus on the nutrition management of inflammatory bowel disease. Unfortunately, the symposium did not go ahead as the BAPEN conference could not take place in the original format in light of the COVID-19 pandemic. The NIFWG is hoping that the 2021 symposium will be incorporated in the BAPEN conference.

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 are planning to design a survey for patients to identify their health and social needs and how PINNT could help patients to achieve them.

BIFA

BSGPHAN representative: Theo Wong
A paediatric Top Tips article on ‘Managing children receiving long term parenteral nutrition’ (Julian Thomas, Theo Wong) was published. 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 HPN.

Dietitians: Rachel Wood is representing the paediatric dietitians on the NIFWG.

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 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.