Insight Vol 6 Issue 1

May 2019 vol 6 issue 1

insight

ISSN 2397-799X

inside this issue: welcome

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service evaluation of transition support service

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birdsong: a journey of remembrance

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development of a paediatric end-of-life transport service

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conference report

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courses, study days and conferences

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sharing best practice in paediatric palliative care

sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

welcome

Mandy Brimble, Editor, Senior Lecturer and Director of Undergraduate Studies, School of Healthcare Sciences, Cardiff University and Academic Associate, Tŷ Hafan.

Welcome to our Spring 2019 issue of Insight. It seems incredible that we are now entering our sixth year. The time really has flown by and a lot has changed in paediatric palliative care since we started out. Regular readers will be aware that we encourage publications from students who have completed academic studies in the field of Paediatric Palliative Care. In this issue we present one such article by medical student Rachel Watson and Dr Megumi Baba, Consultant in Transitional and Paediatric Palliative Medicine. This service evaluation of transition support is an interesting read, providing an insight into individuals’ experiences of this important milestone in the care journey.

Tracy Jones, Head of Community Services and Partnerships at Tŷ Hafan outlines the recent Birdsong project. This was a collaboration with sound artist Justin Wiggan, culminating in a unique way of remembering children entitled ‘These Names will be Forever in our Skies’. This really was an innovative venture and one cannot fail to be moved by it.

We also have a really interesting piece from Interim Head of Governance and Quality, Adrian Smith, who presents a summary of the development of a paediatric end-of-life transport service.

This is a new initiative at Tŷ Hafan, in partnership with the Welsh Ambulance Service Trust. Adrian’s article really demonstrates the significant difference partnership working can make to the experience of children and their families.

As promised in our last issue, Dr Tim Warlow provides a report from the Tŷ Hafan and All Wales Paediatric Palliative Care Network Conference held last October.

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We hope you enjoy reading these pieces and they are useful to your practice, wherever that may be.

As usual we present a list of recent publications which will be of interest to those providing palliative care for children and young people. We have also included details of a number of courses, conferences and study days for those wishing to learn more about this rapidly evolving speciality.

As always, we would love to hear from you.

If you would like to write a piece for Insight please see the guidelines on the back page. There is a range of article options.

If you have recently completed a piece of academic work which you feel is relevant to Insight, why not get in touch? We can talk to you about how it could be adapted for publication. We would really encourage this as a way of getting published for the first time and we are happy to support you with this. You could also comment on an article, share an experience or submit an information request to gain the benefit of other readers’ specialist knowledge.

The email address for submission of items is insight@tyhafan.org or phone Carol Killa on 029 2053 2200 if you would like to discuss an idea.

Finally, this will be my last issue as editor of Insight. Unfortunately my work at Cardiff University and my doctoral research project mean that I must now hand over the reins to a new editor. It was huge achievement to develop and launch the journal in 2014, after eighteen months of hard work, and it has been a pleasure to work with the editorial panel over the last six or so years. I wish the new editor and their team every success for the future.

The journal has an important role in sharing best practice in paediatric palliative care with those who are already involved and in raising awareness of this rapidly growing speciality. As ever the aim of our work, be it academic, clinical, supportive or complementary, is to improve care for children and families.

T: 029 2053 2252 E: insight@tyhafan.org

Editorial panel

Mandy Brimble Editor, Senior Lecturer and Director of Undergraduate Studies, School of Healthcare Sciences, Cardiff University and Academic Associate at Tŷ Hafan

Tracy Jones Assistant Editor, Head of Community Services and Partnerships, Tŷ Hafan

Carol Killa Chair, Director of Care, Tŷ Hafan

Internal reviewers

Hayley Humphries

Suzie Howe

Head of Governance and Quality, Tŷ Hafan

Professional Development Nurse, Tŷ Hafan

External reviewers

Melda Price

Vera Clement

Lecturer, School of Healthcare Sciences, Cardiff University

Palliative Care Clinical Nurse Specialist for Children and Young People, Cwm Taf Local Health Board

Production representatives Sara Webber - Marketing, Communications and Events General Manager, Tŷ Hafan Henry Dernie - Marketing and Communications Manager, Tŷ Hafan

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sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

service evaluation of transition support service provided for paediatric palliative patients entering adult services in south wales Rachel Watson, Medical Student and Dr Megumi Baba Consultant in Transitional and Paediatric Palliative Medicine Cardiff and Vale University Health Board and Tŷ Hafan.

Introduction Transition is the ‘purposeful, planned movement of adolescents and young adults with chronic physical and medical conditions from child-centred to adultorientated health care systems’ 1.

In recent years there has been increasing interest in the transition of patients from paediatric to adult palliative care services; this is partly due to the rising demand for an effective transition process with prognoses for life-limiting illnesses, such as Duchenne Muscular Dystrophy, increasing 2. There is currently limited literature on transition within palliative care 3,4,5, with the majority of research concerning chronic disorders such as diabetes and cystic fibrosis 6, which have developed and delivered a robust service for many years. This research has identified key factors which influence the transition process: with early preparation, good communication between paediatric and adult teams, and key transition workers shown to promote transition 1,3,6,7, whilst lack of transition models and patient anxiety 3,6,8 have shown to have a hindering effect.

There is a large difference between adult and paediatric services in the palliative care sector 9, making information and support for these families crucial to prepare them for such a large change. Adolescence is already a challenging time in young people’s lives, facing physical and emotional changes, as well as experiencing a new desire for, or feeling pressured towards, independence.

Pre-existing literature shows that negative experiences during transition can lead to poorer outcomes and worse compliance in adulthood 10, 11. This makes it vital to support families at this time to make transition as successful as possible.

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The aim of this service evaluation is to gain insight into individual’s experiences during their transition. We aim to identify key facilitators and barriers of successful transition and transition support, in order to highlight where changes are needed and how to implement this to improve patients’ care.

Methods This service evaluation did not require ethical approval but an appropriate consenting process was in place for the participants who took part in data collection.

Semi-structured interviews were held with eight patients and their parent/guardian, and sixteen staff members for a qualitative data collection. Interviews were held at Tŷ Hafan during patient respite visits, or during house visits to patients. The interviews took place throughout a five week period, and were always conducted by the lead author.

Patients were deemed eligible to take part if aged 14 years or over and were available to be interviewed within the timeframes of this evaluation. Four patients were of transitioning age, 14-17 years old; four patients had completed transition, aged 21-23 years. Parents often answered on behalf of the patient, but in cases where patients were able, they were encouraged to answer and offer their insights into the transition process.

Staff members were deemed eligible to participate if they had a responsibility of care, in any way, to palliative care patients currently in transition, resulting in a range of professional opinions from different

areas of the support. Roles included paediatric palliative care registrars, specialist community nurses, hospice healthcare assistants, general practitioners, and staff from a school for children with extra needs.

Separate questionnaires were created for patients and staff, with a combination of multiple-choice questions and rating scales, which discouraged neutral answers, and open questions which encouraged patients’ elaboration. Patients’ questionnaires asked about their transition experience within general medicine as well as within palliative care, enabling us to review the difference between the two services. Questions focused on their unique experience, whether they felt supported and were given enough information, and what was not going well.

Staff questionnaires focused on whether they believed the current service was effective and promoted continuity, and what the current barriers to good transition are in South Wales.

“There is a large difference between adult and paediatric services in the palliative care sector“

T: 029 2053 2252 E: insight@tyhafan.org

Results Patient questionnaires showed a wide range of experience within the current service, with 25% of patients stating they ‘strongly agreed’ to being prepared for adult services, but 50% of patients ‘strongly disagreeing’ to the same statement. Results suggested that the service needs to be tailored to each patient’s needs; whilst two separate patients said they ‘strongly agreed’ that the concept of transition was broached to them at an appropriate age, this was at 15 years for one patient, and 17 years for the other. This shows both an inconsistency within the service, but also the difference in opinion from patients for what constitutes a good transition.

Patient Experirence in Palliative Care Transition

Comparison of transition service between palliative care and general medical teams

100

70

% of patients

33

33

50

60

33

40

33 25

20 0

33

33

33

33

Transition mentioned at appropriate age

Supported by PC Team

Sufficient info about adult PC services

Key:

Strongly Agree

Agree

Disagree

Graph One: Bar chart displaying patient opinion on transition experience within South Wales.

25 Prepared for adult services Strongly Disagree

60

% of patients

33

80

50 40 30 20 10 0

Patient felt supported Key:

Patient was given Patient felt prepared sufficient information for adult services

Palliative care

General Medicine

Graph Two: Bar chart directly comparing quality of transition service between palliative care services and general medical services.

Results were positive for the proportion of patients who had up to date Paediatric Advance Care (PAC) plans, as well as the number of those with a Multi-Disciplinary Team (MDT) meeting regarding transition, the majority attended by a member of the palliative care team. A new joint paediatric and adult palliative care clinic also meant the majority of patients had been given the opportunity to meet a member of the adult palliative care team during transition.

Table 1: Patients who had a recently reviewed PAC plan, an MDT discussing their transition, and the opportunity to meet adult palliative care teams.

Yes (%)

No (%)

PAC plan in place

4 (57)

3 (43)

Recently reviewed

4 (100)

0 (0)

MDT regarding transition

5 (83)

1 (17)

Palliative care present at MDT

4 (80)

1 (20)

Opportunity to meet adult team

4 (67)

2 (33)

Key themes that came up in patient interviews was a lack of information on the differences in services once they reached adulthood, and the lack of respite that was offered once they could no longer attend Tŷ Hafan, at age 18. Another key point that was repeatedly mentioned was that access to respite significantly reduced after reaching adulthood.

Patients and families were worried about changing to adult services and did not think that adult environments were necessarily appropriate for their needs – suggesting a service or environment to specifically meet the needs of young adults.

50% of staff questioned found the transition support to be effective and thought patients were supported sufficiently. However, 69% felt that the current service did not offer enough continuity for patients.

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sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

Discussion This service evaluation adds valuable data to an important field with limited literature within palliative care and will hopefully pave the way for improvement in the transition service to increase quality of patient care.

There are several limitations to this project.

Due to the time frame for data collection, the number of patients interviewed was relatively small. Staff members from Tŷ Hafan were occasionally present during patient interviews, which may have influenced answers regarding quality of transition support, despite encouragement for openness and honesty. Finally, the four patients who fell in the ‘post-transition’ bracket were relying on memories from several years ago, resulting in a recall bias, and time may have altered their feelings and perspective of their transition experience.

However, data collected is still useful in identifying key themes. A leading area of concern was a lack of respite for patients post-transition, with 75% of staff regarding the lack of comparable adult services as a key problem. One patient claimed he had not had respite for three years, since turning 18. Lack of resources and funding was attributed to this, with the majority of staff agreeing this to be one of the biggest barriers to successful transition.

Many patients and their families believe that an adult hospice environment is not appropriate, and believe an intermediate between paediatric and adult palliative

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services would be beneficial. Tŷ Hafan works alongside young adults and families to identify appropriate support services, including respite.

to begin transition whilst others thought 17 years was better – this suggests the need for a flexible and individualised approach, which has been quoted in existing data 1,10,12.

Reassuringly, 69% of staff recognised that the service was improving, with new services such as a joint paediatric-adult palliative care clinic offered to those of transitioning age. This had been offered to 63% of patients asked, a positive step with preexisting literature suggesting the positivity of this opportunity during transition 3,10. Another new development, recognised by staff as being significant, was the post of a transition consultant lead to increase the focus on this area of palliative care.

Conclusion

Many healthcare professionals commented on the lack of co-operation from adult medical teams, which has previously been recognised 1,3. Being absent from transition meetings and not wanting the responsibility of care for these complex patients post transition; most patients had no identified lead clinician post-transition. Patients had no key transition worker, indicated to aid a successful transition 3,8,10,12. This member of staff could be dedicated to ensuring deadlines are met, and joint clinics attended by staff and patients, aiding patient preparation for upcoming changes. This would help to tailor each patient’s transition to their specific needs with different families preferring different approaches. Some believed 15 years was an appropriate age

This service evaluation has allowed us to identify some positive factors within the current service, with the majority of patients feeling supported by the palliative care team during this difficult time of transition.

It has also highlighted improvements that are already in place and further areas for improvement including continuity of care, information about adult services and respite needs of young adults. These key areas, now identified, can be targeted, and initiatives can be put in place to improve the care and support for these patients and families during a challenging and confusing time.

Acknowledgements I would like to thank the healthcare professionals and families at Tŷ Hafan who helped to share their experiences of the transitioning process and for the support of the Paediatric Palliative Care team during this project.

“Reassuringly, 69% of staff recognised that the service was improving“

T: 029 2053 2252 E: insight@tyhafan.org

Reference 1. Viner R. 1999. Transition from paediatric to adult care.

Bridging the gaps or passing the buck? Archives of Disease in Childhood, 81(3), pp:271-275.

2. Strehle E, Straub V. 2015. Recent advances in the management of Duchenne muscular dystrophy. Archives of Disease in Childhood, 100(12), pp:1173-1177.

3. Doug M, et al. 2011. Transition to adult services for children and young people with palliative care needs: a systematic review. BMJ Supportive & Palliative Care, 1(2), pp:167-173.

4. Kirk S & Fraser C. 2014. Hospice support and the transition to adult services and adulthood for young people with lifelimiting conditions and their families: A qualitative study.

Palliative Medicine, 28(4), pp:342-352.

5. Gibson B, et al. 2014. The ‘placement’ of people with profound impairments across the lifespan: re-thinking age criteria. BMC Medicine, 12(1) doi: 10.1186/1741-7015-12-83.

6. Towns S & Bell S. 2010. Transition of adolescents with cystic fibrosis from paediatric to adult care. The Clinical Respiratory Journal, 5(2), pp:64-75.

8. Zhou H, et al. 2016. Transitioning adolescent and young adults with chronic disease and/or disabilities from paediatric to adult care services - an integrative review.

Journal of Clinical Nursing, 25(21-22), pp:3113-3130.

9. Hynson J & Sawyer S. 2001. Paediatric palliative care: Distinctive needs and emerging issues. Journal of Paediatrics and Child Health, 37(4), pp:323-325.

10. Viner R. 2007. Transition of care from paediatric to adult services: one part of improved health services for adolescents: Figure 1. Archives of Disease in Childhood, 93(2), pp:160-163.

11. Crowley R, et al. 2011. Improving the transition between paediatric and adult healthcare: a systematic review.

Archives of Disease in Childhood, 96(6), pp:548-553.

12. Noyes J, et al. 2014. Bridging the Gap: Transition from Children’s to Adult Palliative Care. Bangor, UK. Bangor University. https://www.bangor.ac.uk/history-philosophyand-social-sciences/bridging-the-gap/Final%20Report%20 Bridging%20the%20Gap%20between%20children's%20 and%20adult%20palliative%20care%2010-14.pdf

7. Chambers L. 2015. Stepping Up: A guide to enabling a good transition to adulthood for young people with life-limiting and life-threatening conditions. Bristol. Together for Short Lives. https://www.togetherforshortlives.org.uk/wp-content/ uploads/2018/02/ProRes-Stepping-Up-Transition-CarePathway.pdf

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sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

You are invisible, but now I hear you From the trees, Bouncing from beak to leaves to lips, From sea to skyline Rewiring nature as a promise that I will never forget; that These Names Will be Forever in Our Skies (Justin Wiggan, 2019)

Reference 1. Together for Short Lives. 2012. A Guide to End-of-Life Care : Care of children and young people before death, at the time of death and after death. Bristol. Together for Short Lives. https://www. togetherforshortlives.org.uk/wp-content/uploads/2018/01/ ProRes-A-Guide-To-End-Of-Life-Care.pdf 2. World Health Organisation. 1998. Definition of paediatric palliative care. http://www.who.int/cancer/palliative/ definition/en/ 3. Klass, D, Silverman, P & Nickman, S. 1996. Continuing Bonds: New Understandings of Grief (Death, Education, Aging and Healthcare). London. Routledge.

4. Foster, T & Gilmer, M. 2008. Continuing bonds: a human response within paediatric palliative care. International Journal of Paediatric Nursing, 14(2), pp.85-91.

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5. Mallon, B. 2018. Building Continuing Bonds for Grieving and Bereaved Children. London. Jessica Kingsley 6. Gleeson, L. 2019. Ritual, Symbol & Metaphor https://www. shapesofgrief.com/grief-stories/2019/1/17/ritual-symbol-ampmetaphor-by-liz-gleeson 7. Wiggan, J. 2019. Biography https://www.thesourcefm.co.uk/ presenters/justin-wiggan/ 8. Wiggan, J. 2017 Life Echo http://digicult.it/sound/justin-wigganlife-echo/

T: 029 2053 2252 E: insight@tyhafan.org

birdsong: a journey of remembrance Tracy Jones, Head of Community Services and Partnerships, Tŷ Hafan.

Remembrance is a central tenet of good palliative care in both adult and paediatric settings and is an important feature of supportive bereavement care 1.

The widely accepted definition of paediatric palliative care includes specific reference to immediate and ongoing bereavement care:

’Palliative care for children and young people is an active and total approach to care, from the point of diagnosis, throughout the child’s life, death and beyond. It includes … bereavement support.’ 2 This focus on care of the bereaved family is a dedicated support service in most children’s hospice settings and it is usual for hospices to facilitate regular memorial events to remember the children who have died. Tŷ Hafan has for very many years been committed to supporting the growing number of bereaved families known to the service and holds two bespoke remembrance events each year, one at Christmas and one in the summer.

The summer Service of Remembrance includes a profoundly moving section where the name of every child known to the hospice who has died has their name read out aloud. As one of the team who has the immense privilege of reading these treasured names, I have long been aware of the importance to the bereaved families of hearing their child’s name spoken aloud in this way. It became apparent to me that the families were wholly focussed on hearing ‘their child’s name’ and the moment they heard it you could sense the feeling of relief.

Tŷ Hafan’s bereavement support is firmly embedded in the use of a theoretical concept known as ‘Continuing Bonds’ and the use of both tangible symbols such as handprints and engraved pebbles supports this approach 3,4,5.

Every child known to Tŷ Hafan who dies has their name engraved on a pebble which families are then invited to either take

home or leave in our memorial garden.

The majority of these remembrance pebbles remain in the Tŷ Hafan memorial garden and families can come back to this space whenever they wish. Families, and particularly siblings, are encouraged to handle the memorial pebble. Tangible symbols such as the pebbles ‘serve as a reminder of what has been lost and help the bereaved to come to terms with the entirety and finality of the loss’. 6 Gleeson 6 identifies that ‘the use of symbols can help in containing fear, anxiety, confusion, existential crises and the externalization of feelings that are too overpowering to cope with, at least initially.

Symbols offer us a way to revisit our losses and complete our stories, helping the subconscious to organize itself in a broad manner and adapt to or accommodate the loss’.

In 2018 Tŷ Hafan had the opportunity to embark on some joint project work with sound artist, Justin Wiggan 7. He had been involved in some pioneering work with adult hospices developing a therapeutic project called ‘Life Echo’ 8 and this had led him to become intrigued by the importance of remembrance in supporting people approaching the end of their lives.

Together, Tŷ Hafan and Justin created an innovative remembrance project that would memorialise the many hundreds of children who have died since Tŷ Hafan first opened its doors some twenty years ago.

The project was named ‘These Names will be Forever in our Skies’ and it set out to give families and staff a unique way of having their child remembered. Each child had their name translated into Morse Code which was then ascribed to a birdsong. The birdsong was chosen with reference to birds that were particularly prominent songsters in the given month of the child’s death, for example January included the Thrush. The Morse Code name was then transformed into the song of the ascribed bird and the result was an awe inspiring chorus of nearly 400 birdsongs played one after another.

The project was a real collaboration between the sound artist and the Tŷ Hafan team as it melded the technical knowledge with the inherent understanding of the therapeutic benefit such a project needed to have. As a result of this joint approach the finished sound piece underwent a few alterations throughout its development, with the most important being the spacing of the birdsongs. As you listen to the beautiful sound piece and reflect on the unique nature of each child represented perhaps the greatest impact is the silence between each song. After some considerable thought the gaps between one song and the next were set to represent the life of the child, each gap in seconds mirrors the age of the child when they died – so for a seven year old, a seven second silence and for a baby, maybe only a fleeting moment.

To stand in the tranquil memorial garden at Tŷ Hafan with the wind rustling through the trees and the waves lapping at the shoreline and to hear the names of all these treasured children being ‘sung’ on the air is truly to feel incredibly humbled and privileged.

As a way of remembering the children this project seems to have touched families in a way that more traditional methods of remembrance haven’t. Several families have requested that rather than just have access to their individual child’s song, they would like to have the whole piece as their solace is ‘feeling that their child is not alone and is surrounded by the other children’. A ‘chorus of always remembered, cherished children’.

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sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

development of a paediatric end-of-life transport service Adrian Smith, Interim Head of Governance and Quality, Tŷ Hafan.

As an organisation, Tŷ Hafan accepts end-of-life referrals from across Wales, providing advice and support to our partners in the NHS, and if required, specialist paediatric palliative care for the child at the hospice 1. In an end-of-life situation, transport is provided by the Welsh Ambulance Service Trust (WAST) 2, with either emergency or non-emergency transport.

In relation to the provision of specialist paediatric palliative care Tŷ Hafan gives regard to the recent National Institute for Health and Care Excellence (NICE) Guidance on End-of-Life Care for Infants, Children and Young People: Planning and Management 3.

This guidance sets out a range of standards for services to ensure equity and excellence in service delivery.

One of the standards relates to the preferred place of care and death. It suggests that:

‘if it is suspected that a child or young person may die soon and they are not in their preferred place of death, think about whether rapid transfer is possible and in their best interest. Discuss this with them and their parents or carers’. 3, page 18 The guidance goes on to identify good practice in the planning of such a transfer and states that ‘in collaboration with local hospitals, hospices, and community, primary care and ambulance services, ensure there is a rapid transfer process for children and young people with life-limiting conditions to allow urgent transfer to the preferred place (for example from the intensive care unit to their home or to a children's hospice) 3, page 32 .

In line with the NICE guidance 3 and continual service delivery review, Tŷ Hafan commenced discussions to ensure that family support needs and wishes are met when a child is transferred at end-of-life. There was acknowledgement that sometimes a transfer was too clinical, and a more child friendly approach was required.

A team of staff from Tŷ Hafan and WAST jointly examined the process of how a transfer is arranged, and how the service could be improved in relation to patient and family experience. This involved an exploration of suitable vehicles, staffing requirements and how Tŷ Hafan could make this potential “last journey” as comfortable and dignified as possible, both for the child and any accompanying family member. The focus for this project was endof-life transfers deemed as non-clinical emergencies and therefore with non-emergency transport provided. Clinical emergency transfers from hospital to hospice i.e. a child for compassionate

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extubation 4, 5, would be reliant on an emergency ambulance transfer. This did not fall under the remit of this project.

A multi-disciplinary approach was taken to provide a range of skills and knowledge to developing this project. A senior nurse and a paediatric palliative care play specialist from Tŷ Hafan worked closely with WAST who provided support from their lead on palliative care, and a transport manager, along with members of staff from the Non-Emergency Patient Transport Service (NEPTS).

The priority of any transfer must always be safety 6,7, so the starting point of the project was ensuring both safety and comfort for all children needing such a transfer. NEPTs have recently launched a service to offer an end-of-life transfer to a hospice or home setting for non-clinical emergency transfers. This new service is offered to both adult and paediatric palliative care patients and is currently being rolled out across Wales. The project team have agreed that for paediatric palliative care patients Tŷ Hafan will enhance this service by providing an experienced paediatric palliative care nurse for all end-of-life transfers to the hospice. This involves the ambulance collecting a nurse from Tŷ Hafan, then collecting the child from the home or hospital setting for transfer to the hospice.

The nurse would be competent 8 to provide care whilst on transfer, and ensure the safety, comfort and dignity of the child and accompanying family throughout the transfer.

Thanks to funding from Children in Need who support the Tŷ Hafan Play Specialist role, it was possible to provide some equipment that would help to make the ambulance less clinical for these transfers.

It was identified from consultations with children, families and professionals that the bright lighting in ambulances results in a very clinical feel and can often be a source of distress and discomfort to children; so options around lighting were a primary consideration.

Softer, decorative lights which can plug into a USB have been sourced to mitigate this potential issue.

Other sensory stimuli were also considered and again stakeholders identified that sounds that can be heard from traffic and other external sources were distracting and had the potential to cause sensory distress to the child. Most of the ambulances used have Bluetooth technology so a tablet with music downloaded will be utilised to provide music of the child and family’s choice. The tablet will also facilitate options for films and games, depending on the child’s ability and wishes. Headphones will also be provided for use, as appropriate, to help block out external audio stimuli.

T: 029 2053 2252 E: insight@tyhafan.org

Consideration was also given to the visual appearance of transferring staff and how this could be made less clinical and more child friendly. Tŷ Hafan nursing staff wear polo shirts rather than uniforms so thought was given to how we might make the ambulance personnel’s uniform look less clinical. Throughout the hospice, there are handprints of children who have accessed the service 9, and an idea was raised about using the handprints to provide that link. WAST have sourced and funded epaulettes with handprints on them. There will also be laminated handprints printed to put around the ambulance, to improve the overall look and create a less clinical feel.

Tŷ Hafan is at the very beginning of this project, and will continue to evaluate to ensure that the needs of the children and their families are met. It is hoped that in collaboration with our partners at WAST, we can make that final journey a little more comfortable, and enhance the work we do in creating an atmosphere that supports the child, the family, and the staff involved in what is a very difficult time.

Reference 1. Tŷ Hafan: End-of-Life Care. 2019. https://www.tyhafan.org/endof-life-care-1-1/ 2. Welsh Ambulance Service Trust. 2019. http://www.ambulance. wales.nhs.uk/ 3. National Institute for Health and Care Excellence (NICE). 2016.

Guidance on End-of-Life Care for Infants, Children and Young People: Planning and Management. London. NICE. http://www. londonneonatalnetwork.org.uk/wp-content/uploads/2015/09/ NICE2016end-of-life-care-for-infants-children-and-youngpeople-with-lifelimiting-conditions-planning-and-managementpdf-1837568722885.pdf 4. Association for Children’s Palliative Care. 2011. A Care Pathway to Support Extubation within a Children’s Palliative Care Framework (1st Edition). Bristol. ACT. https://www.togetherforshortlives.org. uk/resource/extubation-care-pathway/

5. Akinsoji, Y, et al. 2010. Compassionate extubation in a hospice: strengthening the links between hospice and paediatric intensive care. Archives of Disease in Childhood, 95 (1), S1, pp.

A20.

6. Fisher, J et al. 2015. Patient safety in ambulance services: a scoping review. Southampton, UK. National Institute for Health Research. https://www.journalslibrary.nihr.ac.uk/hsdr/#/ 7. Healthcare Safety Investigation Branch. 2019. Transfer of Critically Ill Adults. https://www.hsib.org.uk/investigations-cases/transferof-critically-ill-adults/ 8. Royal College of Nursing (RCN) Competencies: Caring for Infants, Children and Young People Requiring Palliative Care (2nd Edition). London. RCN.

9. Tŷ Hafan. 2015. A mum’s story https://www.tyhafan.org/familystories/a-mums-story/

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sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

conference report:

all wales paediatric palliative care network conference october 2018, ‘the palliative care journey: managing uncertainty’ Dr Tim Warlow, Senior Registrar, All Wales Paediatric Palliative Care Network, Chair of the All Wales Paediatric Palliative Care Network Conference 2018 What an exciting year for the collaboration of Tŷ Hafan with the All Wales Paediatric Palliative Care Team. In addition to five regional workshops addressing some of the most difficult aspects of communication, our network conference tackled perhaps the greatest challenge facing families and professionals alike – managing uncertainty. Living with uncertainty is part of everyday life for many of our patients and their families. For professionals, the real challenge is knowing how to guide and serve our families through this journey, providing support and a sense of ‘being held’, whilst helping families consider difficult choices for the future. The day took place at The Park Inn in Cardiff, where delegates from throughout the UK working as care workers, nurses, hospice staff, GPs, physiotherapists, dieticians and paediatric doctors came together to learn.

Our keynote speech was given by Francis Edwards, a veteran of Paediatric Palliative Care from University Hospitals Bristol, who poetically summed up the philosophy of palliative care. The aspect of his talk that most impacted me was the phrase ‘suffering is not a question that demands an answer; it’s not a problem that demands a solution; it is a mystery that demands a presence’.

The aim of the day was to empower those working with children with life-limiting conditions to use their care, humanity and clinical skills so as to journey with our families in confidence and compassion.

The day followed the journey of a five-year-old with cerebral palsy, pausing at each moment along that journey where uncertainty predominated. Jo Griffiths, Consultant in Paediatric Palliative Medicine chaired a panel discussion and virtual team meeting exploring the issues facing this child from a variety of perspectives. Panel members included a paediatric intensive care and general paediatric consultant, hospice care team members, and a community nurse. Chelsea Turner, a young adult with a lifelimiting condition then gave first-hand experience of her journey, including taking questions from the audience. Sharing insights from episodes of significant uncertainty in her own life, with stories of great support and disastrous communication, helped delegates to understand the realities of everyday life for our patients and the importance of our interactions with them.

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The morning finished with one of the most highly praised aspects of the day, a video and Q&A session from Gareth Jenkins, family support worker at Tŷ Hafan, giving the often-forgotten perspective of fathers caring for children with life-limiting conditions.

In the afternoon, the story of our five-year-old girl moved towards an area of perhaps greatest fear and uncertainty, the end-of-life period. Experts from Tŷ Hafan, Marie Curie Hospice, and the All Wales Palliative Care Team, led breakout sessions on topics such as symptom management, spiritual care and bereavement, staff support and debriefing. Feedback from the day was excellent with the overwhelming suggestion for 2019 being that delegates have the option to attend all the sessions again!

I would like to say a huge thank you to the Education Subgroup of the All Wales Paediatric Palliative Care Team, and senior staff and administrators at Tŷ Hafan for organising such a varied and engaging day. Particular thanks to the fathers who participated in video interviews and Chelsea Turner for sharing the patient and family perspective, and insights that will undoubtedly shape the careers of many of the delegates who attended the day.

“Suffering is not a question that demands an answer; it’s not a problem that demands a solution; it is a mystery that demands a presence.“

T: 029 2053 2252 E: insight@tyhafan.org

Publications of interest Aidoo, E & Rajapakse, D. 2019. Overview of paediatric palliative care. BJA Education 19 (2), pp.60–64.

Beaune, L. et al. 2018. The emergence of personal growth amongst healthcare professionals who care for dying children. Palliative and Supportive Care 16 (3), pp. 298 - 307.

Crocher, P and Taylor, E. 2019. What do parents need when their child is receiving end of life care? Nursing Children and Young People 31 (1) P 16. de Noriega, I et al. 2019. Hospital admissions into paediatric palliative care: A retrospective study. Anales de Pediatria DOI: 10.1016/j.anpedi.2019.02.001.

Ekberg, S et al. 2019. Discussing death: Making end of life implicit or explicit in paediatric palliative care consultations. Patient Education and Counselling 102 (2), pp.198-206.

Evans, N. 2018. From car salesman to end of life care children’s nurse. Nursing Children and Young People, 30 (6), p. 13.

Friedel, M et al. 2019. Instruments to Measure Outcomes in Pediatric Palliative Care: A Systematic Review. Pediatrics, 143 (1), https://pediatrics.aappublications.org/content/143/1/ e20182379.abstract.

Gijsberts, M et al. 2019. Spiritual Care in Palliative Care: A Systematic Review of the Recent European Literature. Medical Sciences 7 (2), https://doi.org/10.3390/medsci7020025.

Harding R, Chambers, L, & Bluebond-Langner, M. 2019. Advancing the science of outcome measurement in paediatric palliative care.

International Journal of Palliative Nursing 25 (2), pp. 72-79.

Hurley-Wallace, A et al. 2019. Paediatric pain education for health care professionals. Pain Reports 4 (1), doi: 10.1097/ PR9.0000000000000701.

Law, K and Farrell, C. 2018. Needs of bereaved parents following the death of a child or young person from cancer. Cancer Nursing Practice doi: 10.7748/cnp.2018.e1487.

Neilson, S & Reeves, A. 2019. The use of a theatre workshop in developing effective communication in paediatric end of life care.

Nurse Education in Practice 36, pp. 7-12.

O'Connell, A and Petty, J. 2019. Preparing young people with complex needs and their families for transition to adult services.

Nursing Children and Young People 31 (1), pp. 25- 31.

Slater, S et al. 2019. Management of dystonia in paediatric palliative care. Archives of Disease in Childhood 104 (1), pp: 102-103.

Smith, N. et al. 2018. Supporting parental caregivers of children living with life-threatening or life-limiting illness: A Delphi study.

Journal for Specialists in Pediatric Nursing 23(4), doi: 10.1111/ jspn.12226. [Epub ahead of print].

Wright, A. et al. 2018. Barriers and facilitators to physical activity participation for children with physical disability: comparing and contrasting the views of children, young people, and their clinicians. Disability and Rehabilitation. doi: 10.1080/09638288.

2018.1432702 Zernikow, B et al. 2018. Specialized pediatric palliative care services for children dying from cancer: A repeated cohort study on the developments of symptom management and quality of care over a 10-year period. Palliative Medicine 33(3) pp. 381–391.

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sharing best practice in paediatric palliative care. may 2019 volume 6 issue 1

courses, study days and conferences Courses Cardiff University

Coventry University

Problem Solving in Paediatric Palliative Care: A Masters level short course in paediatric palliative care. Organised by Cardiff University in collaboration with Tŷ Hafan Children’s Hospice and the All Wales Managed Clinical Network for Children’s Palliative Care.

Online module: An Introduction to Children and Young People's Palliative and Complex Care. The aim of this module is to provide an introduction to the palliative and complex care needs of children and young people. The module also explores the care pathways of the Association for Children with LifeThreatening or Terminal Conditions (ACT). Furthermore, the module is designed to enable students to develop basic skills for assessing, designing and delivering care packages through the ACT care pathway. In addition, the module will examine the current contemporary trends and future directions that can influence palliative and complex care needs of children and young people. More information available at: http://www. coventry.ac.uk/course-structure/health-and-life-sciences/ cpd/an-introduction-to-children-and-young-peoplespalliative-and-complex-care/

The course is open to physicians, nurses, psychologists, therapists and other professionals working with children.

Those interested in end-of-life/palliative care and those with a commitment to implementation and dissemination of paediatric end-of-life/palliative care education within your institution or organisation. The vision of the course is to improve patient care by delivering accessible education through which we aim to support health-care professionals to problem solve in paediatric palliative care, whatever their setting or area of interest. Assessments will include a presentation and a 3,000 word portfolio https://www.cardiff.ac.uk/professionaldevelopment/short-courses/view/problem-solving-inpaediatric-palliative-care MSc/PGDip/PGCert in Pain Management via Distance Learning/E-Learning. More information available at: http://courses.cardiff.ac.uk/postgraduate/course/detail/ p231.html Palliative Medicine for Health Care Professionals (MSc).

More information available at: http://www.cardiff.ac.uk/ study/postgraduate/taught/courses/course/palliativemedicine-for-health-care-professionals-msc-part-time BSc Module: Health Care Professionals: End-of-Life Care.

This module is specifically designed for health care professionals working across all care settings. It aims to improve your knowledge and skills in palliative and end-of-life care. More information available at: http://www.cardiff.ac.uk/healthcare-sciences/courses/ courses-for-professionals/clinical-practice-modules/ end-of-life-care-health-care-professionals-hc3127

Conferences Hospice UK Conference. ACC in Liverpool - 20-22 November 2019. More information at: https://www.hospiceuk.org/ what-we-offer/courses-conferences-and-learning-events/ conferences/hospice-uk-national-conf Together for Short Lives: Time for Change? A new vision for children’s palliative care. 25 and 26 March 2020 | Hilton Manchester Deansgate. More information at: https://www. togetherforshortlives.org.uk/changing-lives/sharinglearning-networking/conference-2020/

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University of Birmingham Principles of paediatric palliative care: This interprofessional module will enable practitioners working within paediatric palliative care to develop and enhance their knowledge and skills of the nature and scope of paediatric palliative care.

You will explore and examine a range of subjects including grief and loss, cultural issues and interprofessional working and the impact these have on palliative care. You will also be supported in developing their knowledge of professional, legal and ethical issues in paediatric palliative care. Lectures will be delivered on-line via Adobe Connect webinar with face-to-face lectures on weeks one, four and six. Although not mandatory, you are actively encouraged to attend these three face-toface sessions. More information available at: https://www. birmingham.ac.uk/postgraduate/courses/taught/med/pgmodules/principles-of-paediatric-palliative-care.aspx University of South Wales Paediatric Symptom Management within Palliative Care.

Aims of the module: This online module explores critical issues arising from contemporary paediatric palliative care especially in relation to symptom management. Course duration: You will study for ten weeks with our learning materials, followed by an additional six weeks to submit your essay. An induction day will be held to explain how to use our distance learning resources, and depending on class sizes and the location of each student, some face-to-face group teaching may occur. The module is taught by Dr Richard Hain and Sue Dunlop. More information available at: http://www.southwales.ac.uk/study/subjects/ nursing-health-sciences/short-courses/paediatric-symptommgement-within-palliative-ca/

T: 029 2053 2252 E: insight@tyhafan.org

Study days Paediatric Palliative Care Non-Medical Prescribing Study Day. 24 June 2019, 9:00am - 5:00pm.

Great Ormond Street Hospital, 63 – 67 Great Ormond Street Weston House London WC1N 3HZ. Cost: £50.

More information at: https://www.togetherforshortlives. org.uk/professional_event/paediatric-palliative-care-nonmedical-prescribing-study-day/ Paediatric Palliative Care Study Day for HCA’s.

27 June 2019, 9:00am - 5:00pm Great Ormond Street Hospital, Weston House Weston Lecture Theatre 63 – 67 Great Ormond Street ,Great Ormond Street Hospital for Children, London WC1N 3HZ Cost: £40.

This study day focuses on caring for children and young people with life-limiting conditions. It is aimed at Healthcare Assistants who would like to develop their knowledge, skills and confidence in paediatric palliative care.

More information at: https://www.togetherforshortlives.org. uk/professional_event/paediatric-palliative-care-study-dayfor-hcas-great-ormond-street-hospital/ 10th APPM Paediatric Palliative Care Study Day and Research Day. 14 - 15 November 2019, 9:00am - 5:00pm The Association for Paediatric Palliative Medicine, London.

Early bird and member discounts available. Join the APPM for their research day and annual study day featuring specialist lectures, expert panels, seminars, networking, Q&A time and discussions on up to date, relevant paediatric palliative medicine topics.

More information at: https://www.togetherforshortlives.org. uk/professional_event/10th-appm-paediatric-palliativecare-study-day-and-research-day/

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would you like to submit an article?

The primary function of Insight is to share best practice in paediatric palliative care. Although Tŷ Hafan publishes the journal, our aim is to provide a collaborative platform for all those working in this field. Therefore, your contributions are both welcomed and valued.

All articles should be submitted electronically to Carol Killa, Chair – Director of Care, Tŷ Hafan to insight@tyhafan.org. Submissions will be scrutinised by the Editorial Board who may request changes or for the article to be rewritten. The Editorial Team may reject an article, or hold the article on file for a subsequent edition. Articles can be submitted by a single author or co-written.

Submissions should be written in Arial 12 and submitted as a Word document.

Referencing style is the footnote numbered system. Articles that include details of children and families must be anonymised.

Submitted articles may fall under one of the following categories: quality improvement articles (approximately 300-500 words) In this type of article the author wishes to highlight a new or current service or intervention which reflects the principles of children’s palliative care. The article must give a rationale for the service or intervention based on evidence from policy, research or a specialist body of knowledge.

case studies (approximately 500-1,000 words)

regular features Every edition will contain newsworthy or relevant items such as, details of courses and study days, updates of policy and consultations, news from Managed Clinical Network and South Wales Paediatric Palliative Care Forum Information noticeboard.

This article is intended to highlight the specific needs of the child and family and the support and interventions required to meet those specific needs. The article is intended to educate and should include condition details and other relevant information. The article may look at a specific palliative need or a specific condition with multiple palliative needs. debate (approximately 500-700 words) This article is intended to create debate amongst fellow professionals on a palliative care topic which divides and creates multiple opinions. The article may be contentious and a current ‘hot potato’ as it were. The article will be heavily based on available evidence to support the many arguments, and will actively seek the views of the target audience. reflection (approximately 300-700 words) This article is intended to highlight an analysis of a particular topic of relevance to children’s palliative care. It may be current or historical.

The word count allowances are an approximate guide, longer or shorter pieces will be considered.

If you have any queries about making a submission, please email insight@tyhafan.org

insight@tyhafan.org Tŷ Hafan - Head Office Hayes Road, Sully, CF64 5XX Tel: 029 2053 2245 Fax: 029 2053 2821 Charity no. 1047912