Words from the Chair
New hope for children and young people living with Sickle Cell Disease
With the approval of the new drug, Voxelotor by NHSE this month, there is an opportunity to redress the health inequalities experienced by children and young people living with Sickle Cell Disease and it is reported to be life changing for thousands with sickle cell. Currently the drug is only approved for children over 12 years old.
In England, it is reported that there are around 17,000 people living with sickle cell disease, with 250 new cases each year. Its presentation is more common in people of Black African, Caribbean, Middle Eastern and South Asian heritage.
The new drug is good news, but it needs to be put in context. It was preceded in 2021 by the ‘No One is Listening, An Inquiry into the Avoidable Deaths and Failings of Care for Sickle Cell Patients in Secondary Care’ report. The report found evidence of sub-standard care for sickle cell patients admitted to general wards at attending Emergency Departments. Disappointingly, there was low awareness of sickle cell among health care professionals and inadequate training. The report identified frequent reports of negative attitudes toward sickle cell patients and a weight of evidence that suggests such attitudes are often underpinned by racism.
As nurses working with children, young people and their families it is our duty continue the pioneering work of esteemed colleagues such as Professor Dame Elizabeth Anionwu and advocate for improvements in care and services when we see health inequalities in our practice. Whilst new drugs, therapies and treatment options are always positive news, they are not, in isolation, solutions and patient experience will only be improved when we challenge our own and each other’s unconscious bias to change the culture of health care environments.
The ABPN, as an association that advocates for children and young people, is delighted to see this innovation and recognises that there is work to be done to challenge other health inequalities.
Caron Eyre caroneyre0@gmail.com
Updates from the ABPN
Professor Dame Elizabeth Fradd 1949 - 2024
Many members of the ABPN will have heard the news of the death of Professor Dame Elizabeth Fradd. She was an inspirational leader, a friend and colleague; someone whose passion for children’s nursing shone through her career.
Liz contributed her story to the ABPN’s oral history project and we are so pleased that we have this record, in her own words, about her life in children’s nursing.
In her story Liz discussed nursing education and professional development, emphasising the need for tailored preparation for the future. She talked of the need to challenge traditional practices in nursing, and how she advocated for more personalised and holistic approaches to patient care. Liz stressed the importance of continued investment in the field to ensure the best possible care for children.
She shared her extensive experience in nursing leadership and governance, highlighting her efforts to establish standards of care and advocate for change. Liz emphasised the importance of recognising that children belong to families and communities, rather than solely being the responsibility of healthcare professionals.
Her story, along with many other stories, will be available later this year when the archive of stories is made publicly available.
We will miss you Liz, your legacy is with us all.
Update on our Oral History Project
The ABPN was successful in a bid to the National Lottery Heritage Fund for support in undertaking an Oral History project. The project was part of the Association’s 85th Anniversary celebrations. The project aimed to:
- raise awareness of children’s nursing and the ABPN,
- reach new audiences,
- collect narrative histories of children’s nursing in 20th and 21st centuries,
- develop our knowledge and skills in oral history, and
- create a resource for the future.
The project commenced in April 2023, with the aim of establishing an oral history collection relating to the education and careers of children’s nurses. The last oral history story will have been collected by the end of May 2024.
We are now finalising the project – completing interviews, developing transcripts and preparing to hand over the archive to the Library of Birmingham. It has been a fascinating project and it has enabled us to engage with members and attract new members. We have also been able to work closely with our social media lead Georgina, which has meant that our engagement has increased with over 2000 TikTok followers, 9 videos on our YouTube account and increased in our X (formerly Twitter) and Facebook followers.
We will let you know when the archive is available to be searched, but for now a few headlines, our Oral History stories cover:
- all four countries of the UK
- many types of training including RSCN only training, RGN/RSCN training, diploma level training, degree level training, Enrolled Nurse conversion training, post registration RSCN training and Project 2000 training)
- training between 1957 - 2021
- those employed and those who are retired as well as those who have returned to practice from retirement, and
- those working in clinical, management, government, voluntary, academic, research roles.
We are thinking about how this work can be used in the future as there is certainly potential for further analysis of the rich data collected.
85th Annual General Meeting of the ABPN
The 85th Annual General Meeting of the ABPN was held on 26th March 2024 in person at Studios Birmingham and virtually via MS Teams. The Annual Report for 2023 is available on the ABPN’s website.
Key decisions included:
- Re-election of Caron Eyre as Chair
- Confirmation of Fiona Smith joining the Governance and Development Board
- Approval of new Honorary Fellows
- Confirmation of no change to membership fees for Full and Associate members, these remain at £40 per year.
Focus of work over coming year to include:
- Being strategic about increasing membership
- Exploring possibility of awards for work promoting good practice
- Encouraging recognition of individuals promoting change for more effective care
- Seeking Deputies for Officers to enable succession planning.
- Continuing to ensure management is cost effective through use of remote working.
Honorary Fellows of the ABPN
The Honorary Fellows appointed in 2024 are:
- Associate Adjunct Professor Karen Ford
- Professor Minette Coetzee
- Katrina McNamara
- Margaret Gwilliams
We will be putting out a call for nominations for our 2025 round of Honorary Fellowships in our next newsletter so please put your thinking hats on as we’d be delighted to have nominations.
Update on our social media drive
Thanks to Georgina who has been driving our social media presence forward, we are happy to share that our presence is increasing.
- Georgina started our TikTok account on 11th October 2023. We currently have 20 videos + 3 infographics, 16,992 views, 768 likes and 2030 followers.
- Georgina started our YouTube account on 3rd October 2023. We currently have 10 videos, 1097 views, 60 likes and 14 subscribers.
- Since Georgina started working on our X page in mid-June 2023, our follower count has grown to 1,400 followers.
- Since Georgina started working on our Facebook page in mid-June 2023, we now have 306 members.
Keeping our policies up to date
We continue to work on ensuring our policies are up to date to guide our working practices. This is best practice and also required by the Charity Commission.
These are updated regularly and are available on our website.
We are currently working on our decision-making policy and a paper about the establishment and operationalisation of working groups.
The Blue Book
Our Blue Book contains key moments from the history of the Association reaching back to its first meeting in 1938.
As always, we are interested in any new content for the Blue Book, especially material that will help us fill in details from our early history. We now maintain the Blue Book as a live document and update it regularly. You can find a copy of the Blue Book on our website.
If you have any information you think we should add, then please do let us know. If you can contribute, please contact either Robin robin.hyde@northumbria.ac.uk or Bernie bernie.carter@edgehill.ac.uk
New membership platform
We are in final stages of our transfer over to the new membership platform.
Our members will be receiving more detailed information over the coming month regarding the transfer and for those with a valid email address a unique link to sign up to the platform.
Members of our Governance Team will be receiving some training in the use of the platform which will be our last part of the handover and go live date.
Members without access to email or the internet will continue to be supported manually by our membership team.
If you have any questions regarding your membership please reach out. Simon looks forward to joining you all soon on our new platform. Membership Secretary membersabpn@yahoo.co.uk
Newsletter
If you have any ideas for content or have any feedback on our newsletter, please do contact Bernie bernie.carter@edgehill.ac.uk
Infographic on Childhood Stroke
Designed by Georgina as part of our social media content, this infographic provides an overview of key facts about childhood stroke.
Training and Education
We welcome ideas and contributions to our training and education pages.
So, if you’d like to share any training or education resources and updates, please use our contact form on our website.
Being Participatory: Researching with Children and Young People
The second edition of ‘Being Participatory: Researching with Children and Young People. Co-constructing Knowledge Using Creative, Digital and Innovative Techniques’ builds on the success of the first edition and includes three new chapters.
Published in March 2024 ‘Being Participatory’ is edited by Professor Imelda Coyne and Professor Bernie Carter and with chapters written by experts from the UK, Ireland, New Zealand, USA and Australia. It provides a clear framework for conducting participatory research with children and young people and it draws on practical examples from international research studies.
Imelda and Bernie want to encourage more people to learn about participatory research and how using innovative, creative participatory practices that recognise children’s agency and strengths can promote the inclusion of children and young people with diverse experiences and backgrounds in research. This edition includes more focus on the ways in which participatory research can promote inclusion and reduce the impact of health inequalities. It also addresses remote and digital methods of engaging with children and young people.
With opening and closing chapters by Imelda and Bernie, the core contextual chapters cover the principles of participatory research, ethical issues in participatory research, the contribution of participatory research to policy. The technique-oriented chapters focus on the use of play, interviews, photographs, app-based tools, animation, and videography with participatory research.
ABPN Honorary Fellow Webinar Series: Global, regional and local issues: opportunities for children's nurses
We’re delighted to announce the first in our series of Honorary Fellow webinars.
- Title: Global, regional and local issues: opportunities for children's nurses
- Date and time: We’re aiming for a date in early summer (to be announced).
- Presenter: Fiona Smith, RN,C, RN,A, Dip in Nursing Studies, BA Health Studies, Masters in Business Admin (Health)
- Summary of webinar: Fiona will be talking about some of the global, European and UK perspectives of the issues facing children and young people today. She will address some of the opportunities that children’s nurses, either individually or collectively can take to tackle and influence services and outcomes for children, young people and their families.
- Joining the webinar: The link for joining the webinar will be on our website.
About Fiona: Fiona was awarded Honorary Fellowship of the ABPN in 2023. She retired from her role as Professional Lead for Children and Young People’s Nursing at the RCN in 2021. She is currently volunteering locally, acting as adviser for professional nursing associations overseas, and presents at conferences internationally. Fiona is an Honorary Fellow Association of British Paediatric Nurses, Honorary Fellow Royal College of Paediatrics & Child Health, and Honorary Fellow of Hong Kong Academy of Nursing.
You can contact Fiona by email on fiona.smith15@yahoo.com or follow her on Twitter @FionaSmithMMO
Journal of Child Health Care Resources
Apart from great editorials and high quality peer reviewed papers, the Journal of Child Health Care produces great JCHC podcasts, hosted by Associate Editor, Liz King. These podcasts focus on authors talking about their research and the papers published in the journal.
The latest podcast focuses on Kim Devery and Megan Winsall’s paper ‘Holding back my own emotions”: Evaluation of an online education module in pediatric end-of-life care’.
To listen to this podcast and others in the series, go to https://journals.sagepub.com/home/CHC
2024 World Pediatrics Conference
Members of the ABPN can get 20% of the regular registration fee for the World Pediatrics Conference. The conference runs from October 18-19, 2024 and it will be held at the ANA Crowne Plaza, Osaka.
The theme of the conference is ‘Exploring global health issues and initiatives related to child care’.
For more information go the website
HCUK Events
A series of great events - summits, conferences and masterclasses - are run by HCUK and by following the link to their page on the ABPN website, you can get up to 20% off.
Oral Health in Children with Complex Needs Survey
Are you a medical professional with a degree in nursing / paediatric nursing or an allied health professional based in the UK? Would you mind taking 15 minutes to complete a survey?
- The role of Nurses and Allied Health Professionals (AHP) in supporting oral health for children with long-term health conditions.
- Perception of nurses and AHPs’ role in improving oral health in children with chronic health conditions.
- Knowledge and training received on oral health.
You can click the link below to access the survey if you are interested in participating. Please share this survey with any colleagues or students who may be interested.
Contact S.Alhennawi@liverpool.ac.uk if you have any questions or concerns.
Update on policies, guidelines & reports
Keeping Children and Young People with Mental Health Needs Safe - The Design of the Paediatric Ward (interim report)
The Healthcare Safety Investigation Branch published an interim report on 23rd May 2024 of their investigation of the care of children and young people with mental health issues who are admitted to a paediatric ward in an acute hospital.
This interim report addresses the risk factors associated with the design of paediatric wards in acute hospitals and recognises the “multiple factors that may come together to impact on the care of children and young people with mental health needs who may be admitted to an acute paediatric ward”.
It recommends that:
- “NHS England, in collaboration with key stakeholders, including young people with lived experience and their families, develops guidance on how acute paediatric wards could be adapted to support children and young people with mental health needs. This work should focus on improving the therapeutic environment.
- NHS England, in collaboration with key stakeholders, updates ‘Health Building Note 23: Hospital accommodation for children and young people’ to include the therapeutic environment for supporting children and young people with mental health needs.
- The Care Quality Commission uses the findings of this report to ensure healthcare providers and integrated care boards implement a robust way for risks associated with the adaptations made to acute paediatric wards to be escalated and managed”
It proposes one safety response:
- “integrated care boards work in collaboration with healthcare providers to implement a robust way for risks associated with the adaptations made to acute paediatric wards to be understood, escalated and managed to ensure that adaptations enhance patient safety”
The Big Ambition for Health report
The Children’s Commissioner’s report ‘The Big Ambition for Health’ focuses on the importance of early investment in children’s health through steps to increase the frequency of childhood health checks.
The report talks about how children and young people are ‘uniquely health conscious’ having “witnessed the deep disruption of a global pandemic, seen its impact on their educations, families and social lives”.
The Commissioner has set out five overarching outcomes for every child – they should be safe, healthy, happy, learning and engaged in their community. These outcomes are underpinned by four ambitions:
- Every child grows up happy and healthy and where children need additional help it is provided as early as possible.
- Every child has access to high-quality mental health and wellbeing support in their school and local community.
- Every disabled child or child with special educational needs, and neurodiverse child receives excellent, joined up healthcare, social care and education.
- Every child with the most acute health needs living away from home receives loving, caring support.
Prioritising Early Childhood to Promote the Nation’s Health, Wellbeing and Prosperity report
The ‘Prioritising early childhood to promote the nation’s health, wellbeing and prosperity’ report was published in February 2024 by The Academy of Medical Sciences.
Its focus is on recommendations to the Government to prioritise improving health and wellbeing and reducing inequalities in early childhood.
It notes that “the early years provide a crucial window of opportunity to improve children’s health in the short and long term, providing cumulative benefits, and avoiding the greater challenge and expense of intervening later in life”. It provides five priorities to ensure change.
The executive report notes ‘key child health issues in numbers’ and these include:
- the UK ranks 30th out of 49 OECD countries for infant mortalitity,
- behavioural problems risk is six times higher for children experiencing persistent adversity,
- around 1:5 children are falling short of early learning goals,
- the cost to society of not addressing issues early is estimated at £16.13 billion.
Putting Children First for Sustainable Development report
World Vision’s report ‘Putting Children First for Sustainable Development. The return on investment from child-related Official Development Assistance’ was published in April 2024.
This important report analyses the “economic benefit of Official Development Assistance (ODA) programming that directly or indirectly targets children found that every $1USD of child-related ODA directly or indirectly results in a $10USD return and highlights that investing in children is a way to maximise the benefit that donors see from their ODA programmes”.
It also notes that “only 12% of all ODA of development assistance is either directly or indirectly child-related even though children make up 46% of the populations of aid-receiving countries”.
Children’s doctor adds head injury advice to free app
Dr Michael Malley, an Emergency Department Consultant at University Hospitals Bristol and Weston NHS Foundation Trust, has developed the head injuries section on the NHS HANDI app. This is a free app designed to help parents and carers when looking after a poorly child.
The HANDi App is available to download for Apple phones from the app store or iTunes or for Android phones at Google Play
NHS Constitution: 10 year review
The Department of Health and Social Care is seeking views on how best to change the NHS Constitution.
The “The NHS Constitution empowers patients, staff and the public to know and exercise their rights in order to help drive improvements in quality, efficiency and responsiveness throughout the NHS. It brings together, in one place, existing rights as set out in various legislation”.
The survey closes at 11.69 on 25th June 2024
Continued rise in whooping cough cases in the UK
On May 9th 2024, the UK Health Security Agency reported that “cases of whooping cough continue to increase with 1,319 cases confirmed in March. This follows 556 cases in January and 918 in February, bringing the total number of cases in 2024 to 2,793”.
The report notes that between January and March 2024 there were five infant deaths and reports that “young infants are at highest risk of severe complications and death from whooping cough.
Updated estimates of vaccine effectiveness in pregnancy shows high levels of protection (92%) against infant death” but goes on to note that “uptake of vaccinations that protect against whooping cough have fallen in recent years across the country – in both the programme for pregnant women and the infant programme”.
UK 5-year action plan for antimicrobial resistance 2024 to 2029
In May 2024 the second 5-year national action plan was published setting out ambitions and actions for the next 5 years in support of the 20-year vision for antimicrobial resistance (AMR).
It was developed across the government, its agencies and administrations in Scotland, Wales and Northern Ireland, with support from a range of stakeholders.
Fingertips data
A reminder of the usefulness of Fingertips data published by the Office for Health Improvement and Disparities. You can search reports and summaries using different filters (e.g., year, geography) as well as by different topics. See the links to some useful topics below.
'Don’t get caught out' claiming expenses campaign
The HMRC, 'Don’t Get Caught Out' claiming expenses campaign aims to help healthcare workers to get their work expense claims right by raising awareness of an easy online tool for checking eligibility.
The key campaign messages are:
- If you spend your own money on work expenses, that aren’t already covered by your employer, HMRC may owe you a tax refund.
- You may have seen adverts from tax agents offering to do this on your behalf. However, some of these agents end up taking fees over 40% of the tax refund you are owed.
- You can claim it back quickly and easily online, direct from HMRC
The main work-related expenses include:
- uniforms and work clothing
- buying work-related equipment
- professional fees, union memberships, and subscriptions
- using your own vehicle for work travel, excluding journey from home to work
Roundup of Reviews
Nurse experiences of partnership nursing when caring for children with long-term conditions and their families: A qualitative systematic review
This review aimed “to explore the experiences of partnership nursing among nurses when caring for children and young people with long-term conditions, and their families”.
41 qualitative studies were included in the review.
Three overarching synthesised themes were generated:
- “Using education to promote feelings of safety and support
- Partnering to develop a strong therapeutic relationship, and
- Optimising communication underpinned by shared decision-making principles to deliver individualised care.”
The review concludes that “Nurses demonstrated successful partnership in their practice, but focused on developing dyadic nurse-parent and dyadic nurse-child partnerships. Future practice development that creates a three-way triadic partnership may aid therapeutic relationships and shared decision-making.”
Long-term outcomes after paediatric sepsis: A narrative review
This review aimed to identify and critically appraise the evidence for long-term outcomes in paediatric survivors of sepsis using the Post Intensive Care Syndrome – paediatrics (PICS-p) framework.
Nine studies (N= 2136 children) using 13 different outcome measures were included in the review.
Physical functioning was the most examined domain explored in six studies that used four outcome measures. Morbidity in physical, cognitive, and emotional domains was still evident at 9–12 months. No literature identified explored social health.
The authors of the report conclude that “we identified a wide range of measures, administered at various time points in studies of sepsis survivorship in childhood. Variation in follow-up timepoints, validated tools, and restricted outcome measures highlighted the lack in understanding of this priority area. Furthermore, long-term outcome research and a cohesive understanding across all the PICS-p domains are needed to better understand this population”.
How climate change degrades child health: A systematic review and meta-analysis.
This is the first systematic review and meta-analysis that identifies which climate-health relationships pose the greatest threats to children. The authors reviewed epidemiologic studies to analyse various child health outcomes due to climate change and identify the relationships with the largest effect size.
163 studies were included in the review.
Many relationships between climate change and child health were identified, “the strongest of which was increasing risk (60 % on average) of preterm birth from exposure to temperature extremes”.
“Respiratory disease, mortality, and morbidity, among others, were also influenced by climate changes. The effects of different air pollutants on health outcomes were considerably smaller compared to temperature effects, but with most (16/20 = 80 %) pollutant studies indicating at least a weak effect. Most studies occurred in high-income regions, but we found no geographical clustering according to health outcome, climate variable, or magnitude of risk”.
“The following factors were protective of climate-related child-health threats: (i) economic stability and strength, (ii) access to quality healthcare, (iii) adequate infrastructure, and (iv) food security. Threats to these services vary by local geographical, climate, and socio-economic conditions”.
Clinical Guidelines for Children and Adolescents Experiencing Gender Dysphoria or Incongruence: A Systematic Review of Recommendations (Part 2)
This systematic review and narrative analysis examined the recommendations about the management of children and/or adolescents (age 0-18) experiencing gender dysphoria/ incongruence in published guidelines or clinical guidance.
Twenty three guidelines/clinical guidance publications (1998–2022) were identified (4 international, 3 regional, 16 national).
“Guidelines describe a similar care pathway starting with psychosocial care for prepubertal children, puberty suppressants followed by hormones for eligible adolescents and surgical interventions as these adolescents enter adulthood”.
“In general, there is consensus that adolescents should receive a multidisciplinary assessment, although clear guidance about the purpose or approach is lacking. There are differing recommendations about when and on what basis psychological and medical interventions should be offered. There is limited guidance about what psychological care should be provided, about the management of prepubertal children or those with a non-binary gender identity, nor about pathways between specialist gender services and other providers”.
Healthy Siblings’ Perspectives about Paediatric Palliative Care: A Qualitative Systematic Review and Meta-Synthesis
This qualitative systematic review and meta-synthesis aimed to consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care.
Eleven studies were included in the review.
The overarching theme was ‘A walking shadow: Living in the darkness shaped by the dying sibling’, with three key themes identified: (1) Changing family dynamics; (2) Impact on school and socialisation and (3) Psychological impact and coping.
The authors conclude that “siblings demonstrated negative psychological impacts and were affected by changing family structure and relationships. However, socialisation with society, and varied coping skills such as cognitive coping and using distraction techniques, were significant for siblings to go through this journey and even led to some positive outcomes for them”.
Family Engagement in Paediatric Acute Care Settings: A Realist Review
This realist review and synthesis aimed to create a programme theory of family engagement in paediatric acute care to explicate the relationships between contexts and mechanisms of family engagement that align with family, direct care providers and healthcare organization outcomes.
101 articles were included in the synthesis of the final programme theory.
The findings show that “contexts included family and direct care provider individualism, and the organizational care philosophy and environment. Mechanisms were family presence, family enactment of a role in the child's care, direct care providers facilitating a family role in the child's care, unit/organizational promotion of a family role, relationship building and mutually beneficial partnerships. Outcomes were largely family-focussed, with a paucity of organizational outcomes studied”. Four context–mechanism–outcome configurations were identified.
The authors propose that the final programme theory of family engagement in paediatric acute care provides a roadmap for clinicians to develop complex interventions to engage families and evaluate their impact.
Reducing Epilepsy Diagnostic and Treatment Gaps: Standardized Paediatric Epilepsy Training Courses for Health Care Professionals
This study aimed to evaluate improvement in knowledge and clinical behaviour among healthcare professionals after attendance at paediatric epilepsy training (PET) courses.
A cohort study was performed of 7528 participants attending 252 1-day PET courses between 2005 and 2020 in 17 low-, middle-, and high-income countries, and which gathered data from participants immediately after the course and then 6 months later.
Most participants (98%, 7217 of 7395) rated the course as excellent or good. Participants demonstrated knowledge gain and reported that the course had improved their epilepsy diagnosis and management (73% [311 of 425]), clinical service (68% [290 of 427]), and local epilepsy training (68% [290 of 427]).
The authors conclude that PET supports the global reduction in the epilepsy ‘treatment gap’ as promoted by the World Health Organization.
Experiences and Perceptions of Multidisciplinary Paediatric Teams of Blended Tube Feeding in Children
This study aimed to investigate awareness and knowledge of BTF among multi-disciplinary paediatric staff in Ireland.
A cross-sectional observational study using an anonymous online survey was conducted among doctors, nurses and dietitians and other staff in Children's Health Ireland (CHI).
Among other interesting results, they note that “three in five stated they were somewhat confident in their BTF knowledge and one in five were not yet competent in managing children on BTF”.
They conclude that “healthcare settings should provide evidence-based training to HCPs on BTF to optimise the treatment and safety of children under their care.”
Examining the Implementation of a Community Paediatric Clinic in a Socially Disadvantaged Irish Community: A Retrospective Process Evaluation
This study used a post-hoc qualitative process evaluation study design with multiple data sources to examine the implementation of Kidscope, a community paediatric development clinic providing free health and developmental assessment and onward referral for children (0-6years) in an urban area of southern Ireland where many children experience complex needs.
The findings notes that “successful implementation hinged on developing a coalition of linked practitioners and services whose skills were utilised and enhanced within Kidscope to deliver a high-quality healthcare model to vulnerable children and families. Relational and multi-disciplinary working, innovative approaches to implementation and sustainability, training and education provision, and the accessible community location were among the mechanisms of change resulting in improved child, family, practitioner, and system-level outcomes”.
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