ABPN Newsletter May 2025

Words from the Chair

To update those of you who were unable to attend, our AGM was a very successful day.

We welcomed three new fellows to the Association, Debbie Fallon, Ray McMarrow and Bevan Ritchie. Debbie was nominated for her outstanding leadership to Children and young people nurse education and research, Ray in recognition of his services at national and international level in the safeguarding and care of Children and Young People with mental health and learning disabilities and Bevan for his contribution to children’s palliative care nursing and for sharing his expertise across borders, Bevan is based in Ireland.

I am delighted to report that one of our members, Kath Evans has agreed to join us on the Governance and Development Group. We look forward to working with you Kath.

Our afternoon session gathered community children’s nurse leaders, and we discussed how to influence the provision of community children’s nursing services across the UK with the aim of reducing service variation.

As the NHS in England reset continues, this intent is a perfect example of how we as an association must influence implementation of the 10 Year Health Plan, with its moves from:

• hospital to community
• sickness to prevention
• analogue to digital

With community children’s nursing in mind, I’d like to draw your attention again to our previously published standards and papers:

• ABPN Standards for safe staffing in Community Children’s Nursing, School Nursing and Health Visiting Services for Children and Young People.
• ABPN Background paper on Community Children's Nursing
• ABPN Position Statement on Community Children's Nursing

As always if you would like to become active in the activities of the organisation, please do get in contact, we would be delighted to hear from you.

Caron Eyre, Chair, caroneyre0@gmail.com

Words from the Deputy Chair

Since the last newsletter I have been busy supporting and deputising for Caron Eyre, chairing an ABPN Governance Development meeting and attending Partnership meetings organised by the Royal College of Nursing.

I have also, on behalf of the ABPN, contributed to work being undertaken by the Royal College of Paediatrics and Child Health to update the Facing the Future standards.

I was pleased to support the ABPN World Cafe event held on the afternoon of the AGM by facilitating table discussions focused on Children and Young People's rights, including their families and the need for equitable community children's nursing services across the UK

Dr Jean A Davies, Deputy Chair, jean.davies@bangor.ac.uk

Could you be our new membership secretary?

Jim Robinson stepped down from the role of membership secretary and we miss him already but we need to fill his shoes! So we are looking for someone to contribute to the Association and support the Association as our membership secretary. Our membership platform makes the work streamlined.

As membership secretary you would be part of the Governance and Development Group, working with people who are passionate about improving the lives of babies, children and young people. We are a friendly, supportive and welcoming group. We are interested in applications from people at any point in the career, whether you are working directly with children and young people or are using your knowledge and skills in other settings such as education, management, and research etc.

Please submit your expression of interest (no more than 300 words) explaining what you can offer the Association and why you are interested in the role. Please send your expression of interest to Caron Eyre, Chair caroneyre0@gmail.com. Or contact Caron, if you'd like to find out more about the role.

86th Annual General Meeting of the ABPN

The 86th Annual General Meeting of the ABPN was held on 25th March 2025 in person at the Burlington Hotel, Birmingham and virtually via MS Teams. The Annual Report for 2024 is available on the ABPN’s website. Key decisions included:

• Approval of new Honorary Fellows
• Confirmation of no change to membership fees for Full and Associate members, these remain at £40 per year.
• Confirmation of free student membership for all students studying on an undergraduate CYP programme leading to RN Child registration, for the duration of the programme.
• Confirmation of Kath Evans joining the Governance and Development Board

The focus of our work over coming year will include:

• Governance and Development Group Strategy Day to establish priorities
• Being strategic about increasing membership
• Continuing our programme of webinars
• Facilitating and supporting the ongoing work of our three core working groups: (1) Enhancing Membership working group; (2) Policy Development working group; and (3) Communications and Raising the Profile working group

Update on our Enhancing Membership Working Group

The number of student members is gradually increasing following the review of the application process and issues highlighted by the working group.

At a recent meeting the working group discussed the current ABPN student recruitment campaign and a 2025 focus on attracting qualified nurses. The success of the ABPN webinar programme was acknowledged. Discussion took place about the engagement of members , including those that are ‘retired’. Recommendations from the group were sent to the ABPN Governance and Development Group to consider in advance of the AGM in March 2025

If you would like to get involved in the working group or have suggestions, please email Fiona.smith15@yahoo.com. Your email will be passed onto the chair Michael Tatterton, ABPN Fellow.

Update your details on the membership platform

The membership platform is a useful tool for all members. It is not only for administration purposes but also a way of linking members with each other.

We would therefore encourage members to complete the biographical and interest sections. From this we will be able to build up collaborative groups and give you an opportunity to share your expertise or learn from others.

If you have not yet completed the registration process by responding to the invitation to join the platform, get in touch and we can send you a new invitation.

Cavell Star Award

At the Annual General Meeting, a Cavell Star was presented to Professor Bernie Carter, (President of the ABPN). Norman Long, Fellow of the ABPN, made the presentation speech.

Madam President, Chair, Ladies and Gentlemen, as the oldest Fellow of your Association, I have been given the privilege and honour to speak about one of our members who for many years has given many, many hours promoting our Association.

Our member has a mine of information, lots of valuable connections and tons of patience, relentlessly supporting Officers and members with various queries and ideas to increase not only our membership and profile but always striving to promote Children’s Nursing by Children’s Nurses.

Recognition of their knowledge, skills and abilities resulted in our member being one of the first Children’s Nurses to become a Professor who now has acquired a highly regarded clinical and academic reputation Internationally

In perhaps only a small appreciation of your wonderful support and friendship, may I on behalf of the Officers and members of the ABPN offer sincere congratulations and ask you Professor Bernie Carter to accept this Cavell Award with our very best wishes.

We must all take time to listen

Across the UK there are more than 99,000 babies, children and young people who have a range of life-limiting and life-threatening conditions, and medical complexities who could access palliative care services. Children are living for longer and with more complex conditions than ever before.

In a gap year before starting university, I worked in a children’s hospice. Many children staying at the hospice had cystic fibrosis (CF). Today, it would be unusual for hospices to accept children with CF. Young people with conditions such as Duchenne muscular dystrophy and spinal muscular atrophy (SMA) type II were dying in their early teens. Babies with SMA type I were dying shortly after birth and perinatal palliative care was unheard of. (I’d like to point out that I’ve only been a nurse for a little over 20 years by the way!).

The clinical and technological advances that allow children to live for longer are incredible, but have created new challenges. We know that nursing and healthcare is about so much more than ‘just’ biology, and that taking a biomedical approach to care does not reflect the holistic needs of families. What do we know about the wider needs of children and families?

A recent report found that children and their families experience disjointed and uncoordinated care, and that where people live determines access to services (sometimes referred to as a ‘postcode lottery’). This is in part due to the lack of national guidelines and standards, and because we don’t understand the needs of these children and families.

To mark children’s hospice week later this month, I am pleased to share some of the research projects I’m currently involved in which help us to understand the experiences and needs of children and families who rely on palliative care services across the UK.

• Perinatal palliative care: Parents of babies diagnosed with life-limiting conditions in the perinatal period face numerous challenges, and the role of children’s hospices in supporting them was poorly understood. We’ve undertaken research to understand the needs of parents, and the perspectives of hospice staff, and plan to build on this work by undertaking new research with parents of babies who do not access hospice care to understand the barriers they experience.
• Bereavement support for families: During another project, it became clear that the uptake of bereavement services varies, with families from black and minority ethic groups accessing support less frequently after the death of their child. We’re working on research to understand the experience of families from BAME backgrounds, and how this affects their bereavement outcomes.
• Dignity therapy for young people: Last year, as part of an NIHR-funded study, we explored how dignity therapy could be adapted to better support young people with life-limiting conditions by working with young people and the professionals who support them, developing an app called DIGNISPACE. We’re planning to build on this work to test the usefulness (feasibility) of DIGNISPACE with a further NIHR-funded study.
• Ensuring psychological safety of children’s hospice nurses: A training programme for a regional symptom management team was developed as part of a Florence Nightingale Foundation Leadership Scholarship, which aimed to enhance the knowledge of nurses and increase psychological safety within the team. We’re now working on a research project to measure the impact of this, in the hope that learning from this programme will help palliative care services develop the psychological safety of practitioners more widely.

Being interested in the needs of families and taking every opportunity to listen to them has always been central to my role as a children’s nurse, and one of the many reasons I have followed a career in children’s palliative care. I have, and continue to, learn so much from families – we must all take time to listen.

A community full of human connection, dignity and love

Emily Grainger, Nursing Associate, Bluebell Wood Children’s Hospice

I was working as a care support worker at Bluebell Wood Children’s Hospice, and given the opportunity to train as a nursing associate, via an apprenticeship, which I have recently completed.

I feel incredibly privileged to start my nursing journey in such a meaningful and unique setting. Having the opportunity to work within a children’s hospice and learn from a truly inspiring team has shaped the way I care. The wealth of knowledge from their varying fields and backgrounds has been invaluable, especially benefiting from the experienced nursing associates I hope to one day emulate. I hope to reflect their kindness, caring nature and support in my own practice.

Like most, my only experience of hospice care was in the adult sector, I wasn’t sure what to expect. What I found was a community full of human connection, dignity and love. It is a world of warmth and care, open armed to families navigating the unimaginable. Family centred care is at the core of what we do where every child is seen as an individual, not their condition.

What stands out most to me about children’s hospice nursing is the time we are able to give. Healthcare can often feel rushed; the hospice allows us to slow down and simply care. It gives us grace to tailor our care to what the young person and family need at that time, which often means I get to play just as much as I work. Whether it’s dancing in the corridors, making memories or simply being present with families. These moments make an impact.

Children’s palliative care has captured my heart, and I am so proud to be a part of it.

Adopting a holistic approach to encompass the whole family network

Claire Bethell, Advanced Paediatric Nurse Practitioner; Assistant Professor in Children and Young People’s Nursing

My journey started in 2009 when I graduated from the University of Bradford with an Advanced Diploma in children’s nursing. This projected me into the fabulous world of paediatrics, and I was dedicated to pursing this enriching career. I grounded my skills and knowledge on an acute medical ward in a district general hospital, which confirmed nursing was my passion and I am grateful for this time. I learnt the importance and purpose of empowering family centred care as I met and learnt from some exceptional children, young people and their families. With this valuable foundation, I chose to expand my skills within children’s nursing, including emergency medicine and ambulatory care. In these various roles I developed my leadership skills from a staff nurse to a sister and I thrived from these opportunities and challenges.

In 2018, I wanted to expand my clinical decision making and push my boundaries of autonomous practice by developing my clinical competence. This led me into advanced clinical practice. I qualified from the University of Sheffield in 2021 with Master of Medical Science (MMedSci) as an advanced paediatric nurse practitioner. I continued to learn and grow as an advanced practitioner in a busy emergency department, and this gave me the platform to gain confidence in expanding my scope of practice and autonomy in emergency medicine.

In 2022, I joined the University of Bradford as a lecturer in children and young people’s nursing, it was important to me that I inspired the trail blazers of the future. I currently work at the University as an Assistant Professor, which has provided me the opportunity to expand my skills in academia and research.

Palliative care has always been a passion of mine and such a huge privilege to work with this group of children, young people and families. In my role as an advanced practitioner, I have the opportunity to not only support children and young people physically, but I can use my skills to adopt an holistic approach which enhances a quality of life and encompasses the whole family network.

Supporting Children with Complex Disabilities: A 24-Hour Postural Care Approach

• Date and time: 7th May 16.00-17.00 (UK time)
• Presenter: Sarah Clayton, BSc PGCE

Does your child or the children you support struggle with poor posture, discomfort, or difficulty maintaining healthy positioning throughout the day and night? Join us for an informative and practical webinar on 24-hour postural care, designed for parents, caregivers, and professionals working with children who have complex disabilities.

• What 24-hour postural care is and why it matters
• How positioning particularly at night impacts a child’s health and well-being
• Practical strategies for improving posture
• How to identify poor positioning and make adjustments
• Common challenges and solutions for better support

Who Should Attend? Parents and caregivers of children with complex disabilities. Paediatric Nurses, Physiotherapists, Occupational Therapists, and other healthcare professionals. Special education teachers and support staff

Don’t miss this opportunity to learn how simple postural care strategies can enhance comfort, reduce complications, and improve daily life for children with complex needs.

Improving critical care with lessons from the pandemic podcast

Over a quarter of a million people in the UK enter critical care each year. They’ll be the sickest patients, needing the most advanced care and highly skilled staff to monitor them closely.

In this podcast the focus on what’s distinct about the critical care setting and the particular challenges for improving services and carrying out research. This encompasses the shock of COVID-19, where critical care was at the heart of a new and unfolding crisis, and what this meant for patients and for staff.

HCUK Events

As a member you can get 20% off a series of great events and conferences events that are run by HCUK.

What is the impact of admitting a young person to a psychiatric unit far from home?

Researchers interviewed young people, parents and carers, and healthcare professionals with relevant experience. They found that young people admitted to psychiatric units a long way from home could face difficulties keeping in touch with home, organising home leave and returning to school. Rarely, distant admissions could be beneficial: a young person could find distance empowering, and it could give their families respite.

Research toolkit for matrons and other health and care leaders

For those less familiar with research in practice, creating the environment in which nurses can lead, participate in and deliver research may appear an additional responsibility. This research toolkit can help nurture research in your teams as part of their day-to-day practice to achieve excellence in person-centred outcomes

New resources for autistic teenagers - 'Know Yourself' series

The National Autistic Society has produced the ‘Know Yourself’ series of videos, pdfs and worksheets, to support autistic teenagers in understanding what being autistic means to them.

The resources have been co-produced with autistic young people and feature many talking about their own experiences and what has helped them. The aim is to offer information and ideas to empower teenagers to begin to explore their own experiences and understand themselves more.

Human rights for young autistic people and young people with a learning disability aged 14-25

The British Institute of Human Rights in partnership with Partners in Care and Health has written a guide for practitioners supporting autistic people and people with a learning disability aged 14 to 25. It has been developed to highlight the importance of promoting the rights of young people with a learning disability and young autistic people and includes examples of where rights can be undermined alongside case studies that show the positive impact of rights-based approaches for people with a learning disability and autistic people.

Embedding Child Health Promotion and Preventive Care Within Primary Health Care: From Agenda to Action

This commentary examines what is needed to embed child health promotion and preventive care within primary care in Australia.

The authors note that there “is a ‘missing middle’ when it comes to ensuring that policies and strategies are translated into practice. In other words, articulating what broad principles and approaches are needed to reorientate healthcare is not enough. Rather, tangible actions that focus on how to bridge the implementation gap are also needed. Drawing upon our own research and experience, and contextualised within each of the five Ottawa Charter of Health Promotion actions”

The use of multisensory environments in children and adults with autism spectrum disorder: A systematic review.

This systematic review aimed to assess the impact of multisensory environment interventions in autism and to provide guidelines.

Ten studies were included and quality assessed and synthesized narratively based on target symptoms. The results show that “four studies reported reductions in stereotypic behavior frequency in children and adults; while other studies suggest positive effects on sustained attention, and aggressive and sensory behaviors”.

The authors note that, “overall, there was insufficient evidence due to the paucity of literature, the significant variation between interventions, and the small sample sizes”.

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If you're interested in joining the ABPN please go the membership page on our website.

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