Insight vol 3 issue 1

insight

October 2016 issue 2 ISSN 2397-799X

inside this issue: teaching and supporting pre-registration nursing students in the children’s hospice setting

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establishing a supportive learning environment for undergraduate children’s nursing students at tyˆ hafan

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a student’s reflection

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the use of complementary therapies in paediatric palliative care

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adjuvant use for the treatment of neuropathic pain in children’s palliative care: a review

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a personal reflection and case study 17 courses, study days and conferences 19

sharing best practice in paediatric palliative care

sharing best practice in paediatric palliative care. october 2016 issue 2

welcome to the fifth edition of

insight

Mandy Brimble, Editor, Lecturer School of Healthcare Sciences, Cardiff University and Academic Associate T yˆ Hafan Welcome to our second issue of 2016, the fifth since our launch. Insight is now available in NHS libraries and all university healthcare libraries throughout Wales, so our readership is growing which is great news. In this issue we present another range of interesting and informative articles. We hope you enjoy reading them and they are useful to your practice, wherever that may be.

Abi Tong, Complementary Therapist at Tyˆ Hafan provides an overview of how these therapies are used in paediatric palliative care, not only in the hospice facility, but in hospital, at home and at school. This service is delivered to family members as well as children and young people and has considerable benefits.

Paediatric Physiotherapist, Ellie Lewis, reflects on her experience of working at Tyˆ Hafan and how this has fundamentally changed the way she sees her role. It is an insightful and moving piece. I’m sure it will be of interest to many of you.

Emee Miller, Deputy Lead Nurse at Tyˆ Hafan, presents a literature review on adjuvant use for the treatment of neuropathic pain in children’s palliative care. This piece explores the complexities and challenges of treating neuropathic pain effectively in the face of a dearth of paediatric specific research. This article has been adapted from an assignment completed as part of a module on symptom control delivered by the University of South Wales (details in our courses, conferences and study days section). We feel that it is important to share knowledge gained from such endeavours and to encourage staff

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development in the area of writing for publication. 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.

Students from a number of disciplines undertake placements at Tyˆ Hafan where they acquire a range of knowledge and skills. Nursing students often choose to gain their management competencies in the children’s hospice environment and the Nursing and Midwifery Council (NMC) have praised Tyˆ Hafan for the educational opportunities provided to third year students in their final placement. Michael Eveleigh was one such student and he gives us an insight into this experience with a reflection on leading a night shift under the supervision of his mentor.

Melda Price, Lecturer at the School of Healthcare Sciences, Cardiff University provides a complementary piece which discusses the role of the link lecturer in supporting students at Tyˆ Hafan.

As usual, we present a list of 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.

Finally, you may remember an article in our last issue, entitled ‘Out of the Wilderness’ which presented an evaluation of the Tyˆ Hafan Dads’ Group.

I am delighted to announce that my co-author Hannah Williams and I have been invited to present this at the Hospice UK Conference in Liverpool in November. It is exciting to be sharing this valuable work with a wider audience.

There will be a report on the conference in our next issue.

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 are a range of article options. 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.

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

editorial panel

Mandy Brimble

Editor, Lecturer School of Healthcare Sciences, Cardiff University and Academic Associate at Tyˆ Hafan

Tracy Jones

Assistant Editor, Head of Community Services and Partnerships, Tˆy Hafan

Carol Killa

Chair, Director of Care, Tˆy Hafan

internal reviewers

Hayley Humphries

Head of Governance and Quality, Tyˆ Hafan

Suzie Howe

Professional Development Nurse, Tˆy Hafan

external reviewers

Cath Thompson

Clinical Manager, Skanda Vale Hospice, Llandysul, Ceredigion

Melda Price

Lecturer, School of Healthcare Sciences, Cardiff University

Vera Clement

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, Tˆy Hafan Henry Dernie - Marketing and Communications Manager, Tˆy Hafan

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sharing best practice in paediatric palliative care. october 2016 issue 2

teaching and supporting pre-registration nursing students in the children’s hospice setting Mandy Brimble, Editor Tˆy Hafan provides practice learning opportunities for students from a range of professions.

The following two pieces provide an overview of the role of the university link lecturer and the student experience.

Melda Price is a lecturer in children and young people’s nursing at Cardiff

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University and Michael Eveleigh is a Registered Children’s Nurse working at the University Hospital of Wales. Michael’s piece was written whilst undertaking his final student placement at Tyˆ Hafan.

By presenting these two pieces together, we hope to give you an insight into the individual roles and the mutually supportive relationship between the university, the student and the mentor.

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

establishing a supportive learning environment for undergraduate children’s nursing students at tyˆ hafan Melda Price, Lecturer in Children and Young People's Nursing and Disability Co-ordinator BN Nursing Programme, School of Healthcare Sciences, Cardiff University Tˆy Hafan’s mission is “to offer a high standard of free care to children in Wales who may die in childhood in order to enrich their quality of life, and support to their families during life, at end-of-life and through bereavement” 1.

Price at al2 suggest that there is a lack of knowledge regarding the nature of care undertaken by children’s hospices and that exposure to this practice learning opportunity is important in the development of children’s nurses.

Undergraduate children’s student nurses require a variety of practice learning opportunities (PLO) during the three year degree programme and Tyˆ Hafan provides an exceptional experience for students. Education and learning about the life-limiting conditions which affect children, young people and their families is a recognised part of the children’s nursing pathway at Cardiff University and this can be further augmented

by PLO’s at Tyˆ Hafan. The provision of supportive learning environments for students is vital in preparing the future workforce for nursing and practice3.

Learning opportunities make up 50% of the hours of nursing degree programmes and are, therefore, an important part of the training and education of undergraduate nursing students 4. These PLO’s are supported by the Nursing and Midwifery Council (NMC) Standards for Pre-registration nurse education5. Tyˆ Hafan supports and provides undergraduate nursing students PLO’s from nursing programmes across south and mid Wales at Cardiff University, University of South Wales and Swansea University, as well as bespoke placements to students from further afield.

I am a children and young people’s nursing lecturer at Cardiff University, a post which I have held since 2001.

I have provided a link lecturer role to Tyˆ Hafan for much of my time at Cardiff University. With prior experience of

acute and community children’s nursing services at a senior nurse level, as well as specialist paediatric oncology and palliative care experience, I understand the importance of Tyˆ Hafan as an invaluable placement opportunity for undergraduate children’s nurses.

Creating a suitable environment for learning is the fifth domain of the NMC Standards to Support Learning and Assessment in Practice6. Houghton7 suggests that mentors are pivotal in ensuring students are able to apply theory to practice and to facilitate learning in a nurturing supportive environment8. Part of the role as link lecturer is to facilitate an educational audit every two years to ensure Tyˆ Hafan offers a suitable learning environment for undergraduate students. The audit is a collaboration between Health Care Providers (HCPs) and Approved Educational Institutions (AEIs) within Wales9. The audit at Tyˆ Hafan includes the link lecturers from partner universities and the professional development nurse for Tyˆ Hafan, Suzie Howe. The audit is required for performance monitoring for all practice learning environments to which students are allocated. The Nursing and Midwifery Council (NMC) Standards for pre-registration nursing education5 require that an educational audit is undertaken every two years. However, it is recommended that link lecturers and relevant staff meet regularly to ensure an effective learning environment is maintained.

The educational audit meeting is a formal discussion around the learning environment and availability of

Tˆy Hafan provides an exceptional experience for students

mentors, utilisation of evidence based practice and use of local policies and guidelines. Another purpose of the audit is to ensure there are sufficient mentors who have received their annual mentorship updates and have been triennial reviewed6. Triennial review requires mentors to demonstrate they have mentored at least two students within a three year period and received an annual update since undertaking mentorship training to ensure they remain on the active mentor register6.

Following the educational audit in September 2014, it was agreed that four students would be allocated for PLO at any time from the partner Universities.

The role of the mentor is the cornerstone in establishing effective working relationships between mentor and student and successful placement learning opportunities10. The importance of the mentor - student relationship is highlighted in the NMC Standards to Support Learning and Assessment

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sharing best practice in paediatric palliative care. october 2016 issue 2

in Practice 6, Domain5 : ‘Creating an environment for learning’ (Below).

Nursing and Midwifery Council (2008) Standards to Support learning and assessment in practice. NMC Standards for Mentors, Practice teachers and teachers6.

Domain 5: Creating an environment for learning Stage 2 - Mentor • to support students to identify both learning needs and experiences that are appropriate to their level of learning • use a range of learning experiences, involving patients, clients, carers and the professional team, to meet defined learning needs • identify aspects of the learning environment which could be enhanced negotiating with others to make appropriate changes

• a ct as a resource to facilitate personal and professional development of others The role of the link lecturer at Tyˆ Hafan is to provide support to both students and mentor on placement at Tyˆ Hafan. Students are allocated from the University for a period of PLO and require supervision of at least 40% of the time by their allocated mentor6. This includes having the minimum of three review meetings with the student during the PLO. Firstly, an initial meeting to agree objectives for the PLO, secondly, a mid-way review meeting to assess progress and agree an action plan for improvement during the second part of the PLO and, thirdly, a final review where practice learning outcomes are completed, professional attitude scoring undertaken and final report given. All students on placement must meet the All Wales Practice Assessment Strategy for pre-registration Nursing courses leading to an Award of Bachelor of Nursing

(Hons) Child. The portfolio prescribes the process by which student performance is measured against generic and field standards for competence11.

Raising concerns at any point can also be supported. The relationship between University and mentor for the student progression is paramount. Students evaluate clinical practice following each PLO and Tyˆ Hafan evaluates highly in all categories and provides a valuable placement.

I would like to take this opportunity of thanking all the hard working mentors at Tyˆ Hafan and the support, enthusiasm and organisation from Suzie Howe. The placement of students is supported and expedited by excellent leadership from Carol Killa and Hayley Humphries.

references 1. Killa, C. and Humphries H (2016) Tˆy Hafan’s: The family hospice for young lives. Statement of Purpose. Sully, South Wales. Tˆy Hafan.

2. Price J, et al (2013) Seeing is believing- Reducing misconceptions about children’s hospice care through effective teaching with undergraduate nursing students.

Nurse Education in Practice 13,361-365 3. Royal College of nursing (2007) Guidance for mentors of student Nurses and Midwives. An RCN toolkit. London. RCN 4. Royal College of nursing (2007) Guidance for mentors of student Nurses and Midwives. An RCN toolkit. London. RCN 5. Nursing Midwifery Council (NMC) (2010) Standards for Pre-registration nurse education. London. NMC 6. Nursing and Midwifery Council (NMC) (2008) Standards to Support learning and assessment in practice. NMC Standards for Mentors, Practice teachers and teachers.

London. NMC

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7. Houghton, T. (2016 ) Establishing effective working relationships. Nursing Standard. 30 (29), 40-48 8. Walsh, D. (2014) The nurse mentors handbook. Supporting students in clinical practice. Maidenhead. Open University Press.

9. All Wales Nursing and Midwifery Initiative (2011) All Wales Nursing and Midwifery Pre Registration Group – Designed to meet NMC Standards.

10. H oughton, T. (2016) Establishing effective working relationships. Nursing Standard. 30 (26), 41-48.

11. Cardiff University. (2012). Student Portfolio – Child Nursing Field of Practice. Cardiff. Cardiff University.

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

achieving nursing management competencies in the hospice setting: a student’s reflection Michael Eveleigh, Staff Nurse, University Hospital of Wales This is a reflection on the achievement of management competencies at Tˆy Hafan during the final clinical placement of a pre-registration nursing programme Introduction Critical reflection gives individuals the opportunity to discuss, evaluate, plan and debrief on their experiences, both positive and negative. Therefore, reflection is a necessary and important aspect of nursing1. Nurses are required to update their knowledge and skills to ensure safe, evidenced based practice. Reflection is a way of facilitating this2. This reflection will draw upon a range of literature and is supplemented with information from the Cardiff University Child Nursing Student Portfolio3 which is an All Wales document.

An adapted version of Gibbs 4 reflective cycle will be used as a framework to discuss the clinical experience. Gibbs 4 has been chosen because it follows a robust, structured framework, that allows an individual to demonstrate how past and current experiences affect future ones. In addition, Gibbs model of reflection is well suited to the clinical experience of management in a complex care environment. Complex care is often referred to as ‘medical complexities’,

Leadership and management are paramount in children and young people’s nursing

defined as those who have one or more chronic conditions, including those with a life-limiting diagnosis, those accessing technological assistance and children accessing end-of-life services5. All staff, families, children and young people have been assigned pseudonyms in order to maintain confidentiality in line with the NMC Code of Conduct2.

Description and Feelings Whilst undertaking a management shift as part of my final placement, I was allocated the role of ‘shift leader’ for the night shift, under the supervision of my mentor Ellie. I was feeling confident about leading the shift as I had previously managed shifts on this placement. I also knew that my mentor was confident in my ability to manage the unit, as she had told me so.

One child required one to one care by a registered nurse, so firstly I ensured that a suitably qualified member of staff was allocated and sent for immediate individual handover. Additionally, I had to holistically consider the children and young people who were resident, specifically issues around sexuality, as two male staff were on duty and some children were not allowed male carers.

I, therefore, ensured there were enough female staff at any one time to provide personal care if required. I also made sure that staff who had been on duty the previous night were allocated the same child to ensure continuity of care.

Staff experience and level of competency was another consideration. Dan, one of the care team members (unqualified nursing staff) was relatively new and had not had much experience in enteral feeding. Therefore, I assigned him (under supervision) to a child fed

via a gastrostomy. During the shift an opportunity arose for me to teach Dan about enteral feeding under Ellie’s supervision, thus allowing him to progress his own induction competencies. Dan expressed his gratitude for this learning opportunity.

Night time responsibilities include checking controlled drugs, resuscitation equipment and documenting periodic checks on children. I carried out the controlled drugs check alongside my mentor and another registered nurse.

I allocated the resuscitation equipment check and overnight checklist to a care team member. Delegation of housekeeping tasks, such as laundry and recycling is also the responsibility of the night time shift leader and these were allocated whilst being mindful of giving one to one staff regular breaks and ensuring equity of staff workload. As the shift leader, I checked the medication charts frequently throughout the night, ensuring the registered nurse had checked, administered and signed for all medication. Each time I checked that delegated tasks had been completed, I would ensure that each staff member was happy with the condition of the child in their care and that they were coping with the demands of the shift.

I usually feel slightly nervous giving handover. I have dyslexia so occasionally I have difficulty with reading or pronouncing. However, I prepared with Ellie beforehand by reading over my handover notes and raised my concerns with her before the day staff arrived for the day shift.

Evaluation and Analysis Leadership and management are paramount in children and young people’s nursing, particularly in an environment where care is provided for complex

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needs6. Having an effective shift leader ensures that the potential for harm is reduced, both for children and young people and staff. Extensive, effective team working is also required. The completion of management competencies is important as nurses may be required to take charge of individual units or wards when in practice, and therefore, must be deemed competent to do so.

These competencies are embedded in standards for newly registered graduate nurses7. The achievement of some of these competencies, as demonstrated by the scenario, is outlined below.

Allocation of staff and delegation of responsibility is a major theme in nursing management. It is complex and the Royal College of Nursing (RCN) 8 highlight that there are many factors to consider when matching one to the other but primarily should be in the best interest of the patient and never be influenced by economies of time or cost.

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This aspect of the clinical experience was positive as all members of the team worked well and carried out their responsibilities as allocated. If allocation had been poor at the start of the shift, it may have not gone so well and the potential for risk would have increased.

Goldblatt et al.9 suggests that it is the shifts leaders’ responsibility to escort staff through to the end of the shift safely. Allocation is perhaps one of the most important roles the shift leader plays. As evident by the scenario, issues around sexuality and ethics had to be considered as some children were not allowed male carers for personal care. Through allocation, female staff were almost always present in case these children required personal care throughout the night. This facilitated the achievement of leadership and team working competencies which are essential management skills and mandatory at this final stage of the programme.

According to the NMC Standards for Competence for Registered Nurses10, nurses must “use leadership skills to supervise and manage others and contribute to planning, designing, delivering and improving future services”.

Using leadership skills, it was possible to supervise and teach Dan about enteral feeding. Subsequently, this would improve future services as Dan would eventually be able to care for children requiring enteral feeding. By facilitating and supporting Dan, a further management competency was achieved as Ellie was able to deem me competent in the proficiency described as: “Enhance the professional development and safe practice of others through peer support, leadership, supervision and teaching”3.

This is reinforced by the NMC Code of Conduct2 as Dan was supported and supervised for the task he was delegated.

Additionally, Dan fed back to me that he was grateful for the opportunity to continue his own personal development.

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

According to the RCN8, nurses in charge are accountable for their actions and delegations. A positive aspect to this clinical experience was the continued checking of medication charts throughout the night and liaising with staff to ensure medications had been drawn up, administered and signed for correctly. A further positive outcome from this clinical experience is team working and honesty with the sign off mentor. By being open, honest and having a good working relationship with Ellie, an action plan was devised for giving handovers in situations where dyslexia could become a barrier to effective shift leading. Building on previous placements where pre-reading handovers had facilitated the opportunity to practice and for queries to be addressed, I used the same approach effectively on a larger scale for this management placement. This contributed significantly to my being deemed suitable to become a registered nurse.

When reflecting, it is also important to consider what may have hindered the situation. Considering the complex nature of children staying at Tyˆ Hafan, a number of issues could have caused some concern and it is, therefore, important

to discuss these. Poor delegation, for example assigning care team members (unqualified nurses) to the child who required one to one nursing staff would have breached the NMC Code of Conduct2, as their skill remit would not have been considered. This would have been unsafe and ultimately the shift leader would be accountable for any arising issues. Therefore, if the shift leader had not checked that each staff member was happy with the condition of the child in their care and issues had developed, they may have been overlooked, especially considering some staff maybe reticent about approaching the shift leader. Shift leaders should be compassionate and ensure all staff are supported, which is a requirement of all nurses and a part of a management student’s education11.

Conclusion and Action Plan Upon reflection, I can see that leadership and management in children and young people’s nursing is very important and is dependent upon effective team work, communication, support and appropriate delegation. The experience has shown me the importance of good team working

skills, peer support, critical thinking and the facilitation of junior staff. As identified from the literature, the nurse delegating is responsible for ensuring the staff are competent to carry out the task assigned and are supervised if required.

Looking back across my placements, I can see that my skills have developed to a good level, while still recognising that the learning truly begins as a newly qualified graduate nurse. The management practice outcomes and objectives I set for this placement were achieved and my mentor has signed to say she believes that I have the skills of a newly registered nurse. This builds my confidence to move forward as I take up my first post.

For future experiences I will use not only this clinical scenario, but all I have learnt over the course of my placements to provide safe evidenced based care.

I will continue to ensure that I provide competent, compassionate and helpful care and leadership.

references 1. Jasper, M. (2003) Beginning Reflective Practice. Cheltenham, UK. Nelson Thornes.

2. Nursing and Midwifery Council (2015) The Code: Standards of Conduct, Performance and Ethics for Nurses and Midwives. London. Nursing and Midwifery Council.

3. Cardiff University (2012) Student Portfolio – Child Nursing Field of Practice. Cardiff. Cardiff University.

4. Gibbs, G. (1988) Learning by Doing: A guide to teaching and learning methods. Oxford. Further Education Unit. Oxford Polytechnic.

5. Elias, E. and Murphy, N. (2012) Home Care of Children and Youth with Complex Health Care Needs and Technology Dependencies. American Academy of Paediatrics. 129(5) pp.

996-1005.

7. Nursing and Midwifery Council (2015) Standards of Proficiency for Pre-registration Nursing Education.

London. NMC. 8. Royal College of Nursing (2015) Accountability and Delegation: A guide for the nursing team. London. RCN. 9. Goldblatt, H. et al. (2008) The experience of being a shift-leader in a hospital ward. Journal of Advanced Nursing.

63(1) pp. 45–53.

10. N ursing and Midwifery Council (2010) Standards for Competence for Registered Nurses. London. NMC. 11. Royal College of Nursing (2013) Quality with compassion: the future of nursing education. Report of the Willis Commission on Nursing Education, 2012. London: RCN.

6. Kerridge, J. (2013) Why Management Skills are a Priority for Nurses. Nursing Times. 109(9) pp. 16-17.

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the use of complementary therapies in paediatric palliative care Abi Tong, Complementary therapist, T yˆ Hafan Complementary therapies are described in the House of Lords Report1 as: “A diverse group of health related therapies and disciplines which are not considered to be part of mainstream medical care… embraces those therapies that may either be provided alongside conventional medicine (complementary) or which may in the view of their practitioners', act as a substitute for it.”

The therapies provided at Tyˆ Hafan are those that fall firmly into the complementary bracket. This distinction is important. Complementary therapies have no diagnostic ability, they cannot provide a cure for a condition (though symptoms may be alleviated) and they do not replace allopathic medicine. The therapies are adaptable and patientled, being tailored to each and every individual2.

Tavares2 stated that; "A lack of evidence is not necessarily evidence of a lack of effectiveness" However, despite a dearth of high quality research surrounding the use of complementary therapies in palliative

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care and particularly involving children and young people with complex needs, there are some studies that we can draw on. Those that exist are predominantly oncology based, however, many of the symptoms associated with cancer and its treatments are comparable to those that we can sometimes see in Tyˆ Hafan service users. One of the most important being the association of touch with negative experiences such as pain, discomfort, embarrassment3.

Sackett et al4 explained that evidence based care is the 'conscientious, explicit and judicious use of current best evidence' when making a decision on how treatment should proceed, but alongside this, it is made clear that this should be integrated with the practitioners expertise and patient's choice.

At Tyˆ Hafan, complementary therapies are not only seen as relaxing and enjoyable by the families (supported anecdotally and in an independent report by the market research company Beaufort), but can also have a myriad of physical and mental benefits not necessarily immediately obvious. All family members

can benefit from therapies. The wide variety of complex conditions that present themselves at Tyˆ Hafan come hand-inhand with a huge array of symptoms.

Though, as mentioned, there are relatively few studies regarding complementary therapies, the limited information and research available to us goes beyond, as well as corroborates, the anecdotal evidence seen.

Touch can help to establish rapport between healthcare professionals and those in their care 5. As with 90% of palliative care institutions that provide complementary therapies, Tyˆ Hafan offers massage, aromatherapy and reflexology; these modalities having been shown to be the most popular in such settings2. Positive impact on pain, stress and anxiety have been demonstrated for reflexology, massage and aromatherapy 6,7,8,9 alongside evidence that they can help to relieve constipation 3, improve sleep 6,10 and alleviate motor, sensory and urinary symptoms 11 in a variety of conditions.

Moderate pressure appears to be preferable to a lighter touch eliciting a

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

parasympathetic response as opposed to a sympathetic one 10, and a firmer pressure has been shown to have calming effects on children, particularly those with autism12. Positive touch interactions in general have been shown to decrease blood pressure, stress hormone levels and heart rate, whilst simultaneously increasing oxytocin, dopamine, and serotonin levels, alongside natural killer cytotoxic activity 13,14,10 . One study in particular also shows that there appears to be a beneficial, cumulative effect on these physiological markers through repeated exposure to this type of touch 14.

The provision of time for parents or carers to relax, as well as reduce the emotional and physical pressures of caring for a child with profound and complex needs, is another valuable part of these therapeutic interventions. Teaching therapies to parents themselves to practice on their child has been shown to increase confidence and improve anxiety in the caregivers 3, as well as reduce the likelihood of postnatal depression 15 . These tangible effects are seen

alongside more subjective changes as a result of complementary therapies.

So many of the interactions that take place for the service-users involving touch are based around interventions.

These can often become painful or threatening in the eyes of the recipient 3 . Touch is believed to produce positive emotions and physical respite from symptoms through the release of oxytocin 16 and stimulation of the parasympathetic nervous system 7.

Studies have shown people receiving therapies describe them as “an experience of thoughtful attention” 16 . That they are seen as a positive interaction by patients themselves 8 and that for some people, they can go so far as to create a sense of “existential” respite with perceptions of being released from illness 16.

Providing treatments with the intention of improving quality of life, increasing comfort and bearing in mind the physical-psychological connection is an important and beneficial part of the therapeutic interventions 6,7,16. In one study, a participant undergoing

a number of medical interventions in a day stated that his experience of complementary therapies was the “only non-insulting thing” that had happened to his body during that time frame 8.

At Tyˆ Hafan, we are able to provide these therapies to those who need them, not only within the hospice setting, but at people’s homes, in hospitals and in schools – ensuring we meet their needs on an emotional, physical, spiritual and social level in the most appropriate setting. Through ongoing development and reflection we hope to be able to expand the service even further.

references 1. House of Lords Report. (2000). Complementary and Alternative Medicine www.publications.parliament. uk/pa/ld199900/ldselect/ldsctech/123/12301.htm

10. Papathanassoglou EDE, Mpouzika MDA (2012). Interpersonal Touch: Physiological Effects in Critical Care. Biological Research For Nursing, 14 (4), 431-43.

2. Tavares M (2003). National Guidelines for the Use of Complementary Therapies in Supportive and Palliative Care.

London: The Prince of Wales's Foundation for Integrated Health.

11. S iev-Ner I, et al.(2003). Reflexology treatment relieves symptoms of multiple sclerosis: a randomised controlled study. Multiple Sclerosis, 9, 356 - 361.

3. Cullen LA, Barlow JH (2004). A training and support programme for caregivers of children with disabilities: an exploratory study.

Patient Education and Counseling, 55, 203-209.

12. Edelson SM, et al.(1998). Behavioural and Physiological Effects of Deep Pressure on Children With Autism: A Pilot Study Evaluating the Efficacy of Grandin's Hug Machine. American Journal of Occupational Therapy, 53, 145-152.

4. Sackett DL, et al.1996. Evidence based medicine: what it Is and what it isn't. BMJ, 312, 71-72.

5. McCorkle R (1974). Effects of Touch on Seriously Ill Patients.

Nursing Research. 23 (2), 125-32.

6. Ernst E (2001). Complementary Therapies in Palliative Cancer Care. Cancer, 91, 2182-2185.

7. Hodgson NA, Andersen S (2008). The Clinical Efficacy of Reflexology in Nursing Home Residents with Dementia. The Journal of Alternative and Complementary Medicine, 14, (3) 269-75.

8. Stephenson N, et al. (2003). The effect of foot reflexology on pain in patients with metastatic cancer Applied Nursing Research, 16, 284-286.

9. Takahiro I, et al. (2000). Psychological effects of aromatherapy on chronic haemodialysis patients. Psychiatry and Clinical Neurosciences, 54, 393-397.

13. F eldman R, SInger M, Zagoory O (2009). Touch attenuates infant's physiological reactivity to stress. Developmental Science, 13, 271-278.

14. H olst-Lunstad J, et al. (2008). Influence of a "Warm Touch" Support Enhancement Intervention Among Married Couples on Ambulatory Blood Pressure, Oxytocin, Alpha Amylase, and Cortisol. Psychosomatic Medicine, 70, 976-985.

15. O nozawa K, Glover V, Adams D, Modi N, Kumar RC (2001). Infant Massage Improves Mother-Infant interaction for Mothers with Postnatal Depression. The Journal of Affective Disorders, 63, 201-207.

16. Cronfalk BS, Strang P, Ternestedt B-M, Friedrichsen M (2009).

The existential experiences of receiving soft tissue massage in palliative home care - an intervention. Support Care Cancer, 17, 1203 - 1211.

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adjuvant use for the treatment of neuropathic pain in children’s palliative care: a review Emee Miller, Deputy Lead Nurse, Tˆy Hafan Palliative care for children and young people with life-limiting conditions (LLCs) encompasses an active, total and holistic approach to care – starting from the recognition of the child’s illness to death and bereavement 1.

Its main principles are enhancing the quality of life, providing support to the family and the management of distressing symptoms including pain 1.

of particular interest to professionals in palliative care as it can affect children with LLCs. Managing it can be a challenge and is generally still unsatisfactory 10,11.

Pain is as complex as the humans that experience it. It is not only an unpleasant physical sensation, but a multidimensional, bio-psychosocial phenomenon 2,3,4. Children needing palliative care can experience pain due to a variety of underlying morbidities, made more significant by the meaning ascribed to it by the children themselves or their families, especially at end-of-life. Pain is undertreated in this demographic and there are various barriers to the proper assessment and management of pain in children with LLCs 5.

The World Health Organisation (WHO) guidelines uses a stepladder approach to treating pain in a systematic way and advises the use of adjuvants at each step 12 . Adjuvants used for neuropathic pain include antidepressants, anticonvulsants, baclofen, NMDA receptor antagonists, capsaicin, and some novel approaches like topical lidocaine, cannabinoids and botulinum toxin type A. This review will focus on the use of adjuvants (specifically anticonvulsants and antidepressants) for neuropathic pain in children accessing palliative care.

One of the types of pain that children with LLCs can experience is neuropathic pain. It is considered more severe than other types and is associated with lower quality of life and higher medical costs6,7,8. Although common in adults, it has low incidence in children in the general population 9. However, it remains

Adjuvants use for the treatment of neuropathic pain in Children’s Palliative Care

Central and peripheral nervous system injury can result in neuropathic pain

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Children with LLCs can be affected by neuropathic pain and health professionals in palliative care need to understand more about its mechanisms and management in order to deliver quality care and disseminate information to the child and family.

Neuropathic pain has traditionally been defined as the “pain initiated or caused by a primary lesion or dysfunction of the nervous system” although this has been revised as “pain arising as a direct consequence of a lesion or disease affecting the somatosensory system either at peripheral or central level” 13,7. It is characterised by hypersensitivity to stimuli that normally doesn’t elicit pain such as light touch (allodynia) and exaggerated pain response to painful stimulus (hyperalgesia). It can be described as stabbing, throbbing, lancinating, burning/

scalding, itching, shooting, lightninglike, aching, unpredictable, sharp or dull pain14,15.

In adults, the common causes of neuropathic pain are ischaemia (diabetic neuropathy) and infection (post herpetic neuralgia). In children, neuropathic pain can be due to cancer (tumour invasion), chemotherapy drugs, trauma (complex regional pain syndrome, spinal cord injuries, chronic postsurgical pain including spinal rods surgery in cerebral palsy), primary erythromelalgia and hereditary metabolic/mitochondrial/ neurodegenerative disorders (Fabrys disease) 16,9.

Central and peripheral nervous system injury can result in neuropathic pain although pain intensity might not be related to the extent of the damage, with pain sometimes persisting in areas where initial injury has healed 14. Damage in the peripheral nerves can cause formation of neuromas (producing ectopic discharges in the absence of stimulus) and demyelination (leaving nerves sensitive to mechanical stimulation and inflammation) and react by producing increased sodium channels 17 transmitting pain.

Unlike other types of pain, neuropathic pain has been thought not to respond well to conventional analgesics/opioids.

However, some studies suggest that opioids might be helpful in combination with adjuvants, although not as first line treatment. Opioids might have a role in providing a more immediate effect while waiting for the adjuvants to reach therapeutic levels, which can take a week or more 18.

Buprenorphine, Tramadol, Morphine, Oxycodone has been mentioned as having potential use 19,14. Opioids,

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sodium channel modulators, calcium flux modulator and drugs that enhance descending inhibition through monoamine neurotransmission or release can be used to treat neuropathic pain.

Though lacking a “gold standard� for neuropathic pain management, it is widely recognised that antidepressants and anticonvulsants have been helpful in practice. This is thought to be due to the mechanisms which inhibit pain being similar to the way they exert their action for epilepsy or depression.

Antidepressants work by blocking pain-amplifying channels (calcium/ sodium channels, NMDA receptors) and by inhibiting presynaptic reuptake of monoamines 14. Some act on serotonin and targeting the nociceptive circuits in the brain and spinal cord 17.

Antidepressants can promote sleep 3 and reduce insomnia, anxiety and reactive depression which can accompany chronic pain 20.

Tricyclic antidepressants (TCAs) like Amitriptyline and Imipramine have been reported to decrease neuropathic pain since 1977, but these have significant adverse effects, leading to selective noradrenaline reuptake inhibitors (SNRIs) like Venlafaxine and Duloxetine which

have lesser side effects becoming more popularly used 14, although supporting evidence is limited 18,21 . However, use of TCAs is still common as newer agents like selective serotonin reuptake inhibitors (SSRIs) and SNRIs are found less effective than TCAs, though better tolerated 14,22,20.

Anticonvulsants relieve pain due to similar pathophysiological mechanisms which underlie epilepsy and neuropathic pain. They are thought to modulate pain by blocking primary afferent neuron depolarisation, calcium channels 14 and sodium channels and reducing ectopic/excessive discharges 17.

Gabapentin mimics gamma-aminobutyric acid (GABA) and blocks NMDA receptor depolarisation on GABAergic inhibitory neurons in the dorsal horn of the spinal cord. It is not metabolised by the liver so has few drug interactions and toxicity with overdose is not as serious as with TCAs. It has greater effect and fewer side effects than amitriptyline in diabetic neuropathy and is more effective for diabetic neuropathy than postherpetic neuralgia. Pregabalin is very similar to Gabapentin and has been approved for both postherpetic neuralgia and diabetic peripheral neuropathy, though there

More pain management and palliative care education is needed in the formal training of nurses and other healthcare professionals

appears to be little advantage to using this over Gabapentin 14. Pregabalin may be effective sooner than Gabapentin and being taken twice rather than three times daily may make it a better choice 18.

Rose 20 argues that Gabapentin is the preferred agent due to having the most favourable adverse event profile. Davis 14 noted that no direct comparison between these two has been made yet, no randomised controlled trials (RCTs) for anticonvulsants in children is pointed out by Rose 20. Carbamazepine has been useful for trigeminal neuralgia23.

Oxcarbazepine and Pregabalin have

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anecdotal support 20. Hains 17 mentioned Phenytoin and Carbamazepine as being effective.

Though there are few direct comparisons, responses appear to be the same for antidepressants and anticonvulsants 14.

He wrote that if pain relief effectiveness, toxicity and drug interactions are taken into account, then the rational choice would be using Gabapentin/ Pregabalin > SNRIs > opioids > Tramadol > TCAs. He further postulated that a combination therapy based upon rational choices will improve treatment, as a single therapy is unlikely to be effective with causality from multiple mechanisms, and may actually benefit from improved therapeutic index although they do not necessarily have to be synergistic. McCulloch 8 takes a different approach, devising a stepwise pathway starting with either

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a TCA or calcium channel a2-d ligand (either Gabapentin or Pregabalin), a combination therapy of first line agents, topical anaesthetics, opioids as needed, non-pharmacological therapies then progressing on to second line SNRIs and third line medications.

It is important to explain to the parents and child the reasons why antidepressants and anticonvulsants are prescribed for pain. This will lessen their confusion and anxiety as well as alleviating concerns and perceived stigma in using these medications, thereby promoting adherence 6.

Limitations exist in our management of neuropathic pain. Some of the issues in palliative care include undertreatment and under-assessment of pain by healthcare professionals, as well as limited evidence-base on the

use of medications in children, their side effects and dose effectiveness. There are no large RCTs involving children, with most evidence extrapolated from adult studies8,20,24 carried out in the early 2000s.

Drug trials have been mostly for a single disease and the outcome generalised for all types of neuropathic pain, which might explain why some drugs work better on some diseases states than others 14. Gaps exist in labelling and most medications for pain for children are not approved or adequately labelled for this purpose 25,26,27 and require further exploration.

There are many barriers to effective pain management as discussed above but some can be due to child/family/ healthcare personnel’s perceptions and attitude. Main et al.2 discussed how decision-making and management are coloured by the doctor’s own implicit

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model of pain. Misconceptions about pain can be common among lay people and healthcare staff.

these challenges, it is vital that we recognise and treat pain to provide good quality of life to this group of children.

Nurses aim to deliver excellent care but barriers might exist such as lack of knowledge 3,15 being highly influenced by the pain behaviours of patients, treating pain behaviours not the pain itself, distancing themselves from patients in pain, desensitisation, ward culture, patterning from senior members (that have poor pain practice themselves), and low organisational priority on pain, competing demands of patients/doctors/ nurses, heavy workload and constant interruptions 3. More pain management and palliative care education is needed in the formal nurse training as well as other healthcare professionals. The need for continuing education for all professionals involved was emphasised by Griffiths and Pfund 28 to respond to the needs and changing field of palliative care, and medical and nursing education along with policy changes has evolved to cater to the new specialism of palliative care 29,30.

Organisational priority on pain is being slowly improved with pain assessment a mandatory criteria for re-accreditation of hospitals in the US 3.

Siden and Oberlander 32 focused on assessment of pain in children with developmental disabilities/significant neurological impairment and argue that the following should be factored into assessment:

The need for good communication in palliative care has been emphasised by Heaven and Maguire (2008). However, communication challenges when assessing pain are common. Some children are profoundly disabled and have difficulties with communication, impacting on assessment of pain by health professionals. They can have underlying health problems that complicate assessment and treatment, and may be receiving multiple therapies and input from different professionals.

Siden and Oberlander 32 have highlighted the difficulties in assessment and management of pain in children with developmental disabilities and their exclusion from mainstream research in the past, leading to under-recognition and under-treatment of their pain. Despite

• underlying neurological condition/ process (how this might influence pain system), developmental level • usual behavioural and health condition • usual means of communication • caregivers’ views and understanding of what is happening • role of intercurrent illness • differential diagnosis Pain assessment is best made by the nurse using an appropriate validated tool, asking the child to score/self-report their pain 33,34 using the Faces or numerical scale. Pain diaries 35 might be helpful especially for adolescents. If a child is nonverbal, then observational tools like the Paediatric Pain Profile with the help of family/carers who know the child well can be useful, though there will be discrepancies between scoring. However, using a tool individualised for the child and communicated throughout different care environments can hopefully decrease the discrepancies.

There are specific tools to diagnose and assess neuropathic pain, like the Leeds Assessment of Neuropathic Symptoms and Signs Pain Scale, the Neuropathic Pain Questionnaire (NeuPSIG), the Douleur Neuropathique 4 Questions and the painDETECT questionnaire 6,7. The NeuPSIG has introduced a new grading system for diagnosing neuropathic pain which will have consequences for clinical and research purposes13 and will hopefully alleviate the ambiguity of diagnosing it 36.

It is not only assessment that needs to be focused on but treatment and evaluation.

Documenting the effect it has on the child’s activities of daily living, mood and quality of life will ensure we will have a bigger body of knowledge to draw upon, as most of common practice in children is anecdotal at this stage. Sharing of information on best practice is vital in palliative care.

Conclusion and recommendation for practice Neuropathic pain is complex and challenging to manage. Professionals working in palliative care need to understand the underlying processes and different treatment options for it, as well as reasons for them so they can assist the children and families in understanding their experience.

Failure to assess pain adequately is a significant barrier to treating it. A formal assessment tool that is individualised and appropriate for a child and shared amongst health professionals in hospital, school, home and hospice will be vital in maintaining a unifying link and standard of assessment, thereby decreasing discrepancies. Neuropathic pain affects not just the child but also the family, therefore, it is vital that we communicate and work with them closely.

A methodical, rational approach needs to be applied in the face of scant scientific evidence. Research on pain has largely been focused on adults and the effect of using adjuvants like antidepressants and anticonvulsants for neuropathic pain on children is lacking and requires exploration. In the meantime, communication between teams, information sharing of best practice and learning from each other and from children and families is an interim way forward.

references 1. Association for Children’s Palliative Care (ACT) (2008) Children’s palliative care definitions http:www.act.org.uk 2. Main, C. et al. (2008) Pain Management: Practical applications of the biopsychosocial perspective in clinical and occupational settings. 2nd edn. Philadelphia: Churchill Livingstone Elsevier.

3. Mann, E. and Carr, E. (2009) Pain: Creative Approaches to Effective Management. 2nd edn. Basingstoke: Palgrave Macmillan.

4. Twycross, A. et al. (eds.) (2009) Managing Pain in Children: A Clinical Guide. Chichester: Wiley-Blackwell.

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5. Brown, E. and Warr, B. (2007) Supporting the Child and the Family in Paediatric Palliative Care. London: Jessica Kingsley Publishers.

6. Fear, C. (2010) Neuropathic pain: clinical features, assessment and treatment. Nursing Standard 25 (6): 35-40.

7. Haanp채채, M.et al (2010) NeuPSIG guidelines on neuropathic pain assessment, Pain 152 (1):14-27.

8. McCulloch, R. (2012) Pharmacological approaches to pain.

3: Adjuvants for neuropathic and bone pain in Goldman, A. et al. (eds.) Oxford Textbook of Palliative Care for Children.

2nd edn. Oxford: Oxford University Press.

9. Walco, G.et al. (2010) Neuropathic Pain in Children: Special Considerations Mayo Clinic Proceedings 85(3) :33-41 10. Baron, R. (2009) Neuropathic pain: a clinical perspective.

Handbook of Experimental Pharmacology, 194 (3):30.

11. Haanp채채, M., et al (2009) Assessment of Neuropathic Pain in Primary Care. The American Journal of Medicine, 122 (10): S13-S21.

12. World Health Organization (2012) WHO pain ladder www.who.int/cancer/palliative/painladder/en/ 13. Eisenberg, E. (2010) Reassessment of neuropathic pain in light of its revised definition: Possible implications and consequences, Pain, 152 (1):2-3.

14. Davis, M. (2007) What is new in neuropathic pain?

Supportive Care in Cancer, 15 (4): 363-372.

15. Wood, S. (2008) Anatomy and physiology of pain, Nursing Times.net, 18 September 2008. http://www.nursingtimes. net/clinical-archive/pain-management/anatomy-andphysiology-of-pain/1860931.fullarticle 16. Farquhar-Smith, P. (2007) Anatomy, physiology and pharmacology of pain. Anaesthesia and Intensive Care Medicine, 9 (1):3-7.

17. Hains, B. (2007) Pain. New York: Chelsea House Pub. Adobe ebook. 1 (5-6), 8 (76-77), 10 (95).

18. Dworkin, R. et al. (2007) Pharmacologic management of neuropathic pain: evidence-based recommendations, Pain, 132 (3): 237-251.

19. Bennett, M.et al. (2006) Can pain be more or less neuropathic? Comparison of symptom assessment tools with ratings of certainty by clinicians. Pain, 122 (3): 289-294.

20. Rose, J. (2008) Analgesic Medications for Acute Pain Management in Children in Walco, G. and Goldschneider, K. (eds.) Pain in Children. A Practical Guide for Primary Care.

New Jersey: Humana Press.

21. Saarto, T. and Wiffen, P. (2007) Antidepressants for neuropathic pain. Cochrane Database of Systematic Reviews. Issue 4.

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22. K notkova H, Pappagallo M. (2007) Adjuvant analgesics, Medical Clinics of North America, 91(1):113-24.

23. F innerup, N. et al. (2007) An evidence-based algorithm for the treatment of neuropathic pain. Medscape General Medicine, 9 (2):36.

24. Walker, S. (2008) Pain in children: recent advances and ongoing challenges. British Journal of Anaesthesia, 101 (1):101-110.

25. B allantine, N. and Daglish, E. (2012) Using medications in children in Goldman, A., Hain, R. and Liben, S. (eds.) Oxford Textbook of Palliative Care for Children. 2nd edn. Oxford: Oxford University Press.

26. B uppert, C. (2012) The Perils of Off-Label Prescribing.

Journal for Nurse Practitioners, 8 (7):567-568.

27. S achs, H., et al (2008) Labeling of Pediatric Pain Medications in in Walco, G. and Goldschneider, K. (eds.)

Pain in Children. A Practical Guide for Primary Care. New Jersey: Humana Press.

28. Griffiths, J. and Pfund, R. (2010) Supporting learning in paediatric palliative care in Pfund, R. and Fowler-Kerry, S. (eds.) Perspectives on Palliative Care for Children and Young People: A Global Discourse. Oxford: Radcliffe Publishing.

29. D ixon, L. (2007) Nurse education in Wee, B. and Hughes, N. (eds.) (2007) Education in Palliative Care. Building a Culture of Learning. New York: Oxford University Press.

30 . M iller, M. and Wee, B. (2007) Medical education in Wee, B. and Hughes, N. (eds.) (2007) Education in Palliative Care.

Building a Culture of Learning. New York: Oxford University Press.

31. Heaven, C. and Maguire, P. (2008) Communication issues in Lloyd-Williams, M. (ed.) Psychosocial issues in palliative care. 2nd edn. Oxford: Oxford University Press.

32. S iden, H. and Oberlander, T. (2008) Pain Management for Children with a Developmental Disability in a Primary Care Setting in Walco, G. and Goldschneider, K. (eds.) Pain in Children. A Practical Guide for Primary Care. New Jersey: Humana Press.

33. Caple, C. and Schub, T. (2012) Pain Assessment in Children in Pravikoff, D. (ed.) Cinahl Information Systems EvidenceBased Care Sheet, March 9, 2012.

34. von Bayer, C. (2008) Measurement and Assessment of Pediatric Pain in Primary Care in Walco, G. and Goldschneider, K. (eds.) Pain in Children. A Practical Guide for Primary Care. New Jersey: Humana Press.

35. F ine, P. (2008) The Hospice Companion. Best Practices for Interdisciplinary Assessment and Care of Common Problems During the Last Phase of Life. New York: Oxford University Press. Gould, H. (2007) Management of Painful Neuropathies. Current Treatment Options in Neurology, 9:75-84.

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the changing perspective of the role of physiotherapy in paediatric palliative care:

a personal reflection and case study Ellie Lewis, Paediatric Physiotherapist I have been a Paediatric Physiotherapist for nearly five years and have spent the last year working in Tˆy Hafan Hospice. Prior to my current role, my experience ranged from working in Paediatric Intensive Care Unit (PICU), Trauma and Orthopaedics, Oncology and Neurology to Community Outpatient Services and Special Schools, so I am familiar with many different settings for Paediatric Physiotherapy However, I had very limited knowledge of the physiotherapy role in a children’s hospice.

I had not visited Tyˆ Hafan and had no specific knowledge of this type of environment.

My experience of end-of-life care was very medically driven. I had been involved with patients who were critically unwell in

the PICU environment and in emergency environments where end-of-life patients received active treatment due to organ donation requirements. Throughout my career as a physiotherapist, I had a clear and defined role - to be involved with a patient in any environment to help improve their condition, keep them medically stable, and progress their abilities. This might be

on a ward, in a school or within their own home ¹. However, my perspective of the role ², reason for being part of the team and my involvement with families has undoubtedly changed due to my experience of caring for one particular child. To maintain confidentiality, I have used pseudonyms.

I will refer to the child as Sally, her mother as Fay and her father as John. Sally is an

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eight year old girl with severe neurodisability and multiple chronic co-morbidities. Sally lives at home with her parents and Fay is Sally’s full-time carer. Fay attends school and Tyˆ Hafan with Sally, and stays with her throughout her many hospital admissions.

The main physiotherapy intervention for Sally for the past few years, during hospital admissions and when reviewed in school, has been respiratory treatment including manual techniques and suction for recurrent chest infections.

Sally spent the final few weeks of her life at Tyˆ Hafan. In the past, when it was clear that I could no longer help improve a child’s condition, I had reduced my level of input so that the medical team could take over for end-of-life care. With Sally it was the opposite. The medical teams managed her complex requirements, but my input in relation to managing, but not treating her respiratory needs actually increased.

I remained part of her team throughout her final weeks 4.

Through my previous roles, I had known Sally and Fay for a number of years.

I originally met them whilst on a respiratory rotation in the children’s hospital, where I spent many on-call nights and weekends helping to manage secretions and enhance Sally’s ability to fight chest infections. Later, I worked with her in a special school. My experience of Sally’s condition ranged from relatively well to very unwell. I had come to know Fay very well and learnt more about Sally through her than is possible from medical or school reports.

I spent hours in conversation with Fay, weighing up the options for Sally’s care, and helping her reach a decision which she felt was the best for her daughter.

I spent time with Sally every week - checking equipment, assessing Sally’s chest and advising Fay on Sally’s respiratory health versus fluid overload and oedema. I also spent a great deal of time with the staff closest to her, advising them on nebulisers, when it was and wasn’t appropriate to give them depending on her abilities each day, and reassuring staff about the decisions they had made. Fay and I had many long conversations, sometimes about Sally’s condition and needs, but sometimes everyday thoughts and reminisces. I felt extremely privileged that I had known Sally for such a long time and I was able to talk to Fay about time in hospital, at school and Tyˆ Hafan. I was also humbled to be part of the team that was there for Sally and Fay, to offer them both the support they needed towards the end of Sally’s life. Even in the final few days there were smiles and laughter. It is a rare gift to experience happiness with a family during such a sad and emotional time. It is one of the many things that make children’s hospices such incredibly special places.

When I first spent time with Sally at Tyˆ Hafan, she was receiving a minimal amount of active respiratory physiotherapy treatment. Due to haematological complications arising from the comorbidities associated with her condition, she had deteriorated past a safe point for intervention 3. She was also no longer attending school due to fatigue and risk of infection. However, she was still managed by the Paediatric Respiratory team at the children’s hospital who were overseeing her medications and nebulisers. Sally and Fay were attending Tyˆ Hafan very regularly so I became the main link between them and the respiratory team. I was supporting Fay in making decisions and plans for Sally’s respiratory needs as her condition continued to change and deteriorate.

no longer under my care, Fay most definitely was. She spent another week at Tyˆ Hafan to receive support, and it was during that time that I realised my role had possibly its greatest impact. Due to the areas I had worked in and the time I had spent with Sally in hospital, I was able to have a very open and honest discussion with Fay about how different her daughter’s final few days could have been if she had been admitted to hospital. It was a discussion that few others were able to have and I knew that it was much needed by Fay. Sally received the best possible care during her final days and she was in an environment that was not medicalised, where there were no beeping alarms, crash calls or chaos as can sometimes be the case in a hospital.

The staff at Tyˆ Hafan arranged for her dogs to be brought to visit her and for John to be able to stay as well. She was with her parents, comfortable and at peace.

I had never been part of a team who gave such a high level of support and quality of care to a child and family at the end-of-life.

I had always taken a step back and handed over care to nurses and doctors. But for Sally and Fay, I was with them throughout and beyond. To know that I had been part of the team that made her as comfortable as possible has given me more emotional comfort than I can describe. I feel honoured that I could support Sally, Fay and my colleagues. And in turn I have experienced a level of support and kindness from my colleagues that has both humbled me and changed my perspective of working relationships.

Unlike other experiences, where my role ceased when the child died, I realised my role had not yet ended 5. Although Sally was

references 1.

Chartered Society of Physiotherapy (2013). What is Physiotherapy? Available at: www.csp.org.uk/your-health/whatphysiotherapy

E APC Taskforce Steering Group (2007). IMPaCCT: Standards 4. for Paediatric Palliative Care in Europe. European Journal of Palliative Care; 14(3): 109-114.

English, AM (2015). Physiotherapy in Palliative Care. Oxford 2.

Textbook of Palliative Medicine (5th Ed) Oxford University Press: 197-201.

M ain E. and Denehy L. (2016). Cardiorespiratory Physiotherapy; 5.

Adults and Paediatrics (5th Ed) Elsevier: p433.

J ohn, J (2014). Palliative Care: The Physiotherapy Perspective.

3. ehospice [online]. Available at: www.ehospice.com/uk/Default/ tabid/10697/ArticleId/10721

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courses, study days and conferences courses Cardiff University 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 MSc/PGDip in Palliative Medicine/ Palliative Care. More information available at: http://courses.cardiff. ac.uk/postgraduate/course/detail/ p233.html 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: www.cardiff.ac.uk/healthcaresciences/courses/courses-forprofessionals/clinicalpractice-modules/end-of-life-carehealth-care-professionals-hc3127

University of South Wales Symptom Management for Paediatric Palliative Care. Ten credit E-Learning MSc Module. Managed by Sue Dunlop and Dr Richard Hain. Email Sue for more information: sue.dunlop@southwales.ac.uk

study days Grief and Bereavement in Schools.

29 November 2016. Child Bereavement UK, Clare Charity Centre, Wycombe Road, Saunderton, High Wycombe, Buckinghamshire, HP14 4BF. Email: training@childbereavementuk.org.

Phone number 01494 568909 Price £120 www.childbereavementuk.org 7th APPM paediatric palliative care study day and AGM. 2 December 2016.

Association for Paediatric Palliative Medicine. Hilton Birmingham Metropole, The NEC Birmingham, Pendigo Way, Birmingham, West Midlands, B40 1PP. Contact emailappm@ togetherforshortlives.org.uk Phone number 01179897820. Price £160 (£10 discount for APPM members, and early bird discount)

conferences Child Bereavement UK 5th Annual Schools Conference 2016 - Grief and Bereavement in Schools "Let's talk about it" 11 November 2016. Manchester Conference Centre www.childbereavementuk.org/ training/conferences/5th-annualschools-conference-manchester Hospice UK Annual Conference ‘People, Partnerships and Potential’ 16 – 18 November 2016, Liverpool. www.hospiceuk.org/what-we-offer/ courses-conferences-and-learningevents/hospice-uk-annual-conf The All-Wales Palliative Care Conference 17 - 18 November 2016, Gregynog Powys www.pcrs.org.uk/index. php?pageid=10&newsid=73 5th International Public Health and Palliative Care Conference: Palliative Care IS Public Health; Principles to Practice. 17 - 20 September 2017.

Ottawa Conference and Event Centre, 200 Coventry Road, Ottawa www.iphpc2017.com/

publications of interest Baker, JN, et al. 2015. Research Priorities in Pediatric Palliative Care. Journal of Pediatrics. 167, pp. 467-70 Zimmerman, K et al. 2016. When parents face the death of their child: a nationwide cross-sectional survey of parental perspectives on their child’s end-of-life care. BMC Palliative Care, 15:30 DOI 10.1186/s12904-016-0098-3 Darbyshire, P, et al. 2015. Fighting for care: parents’ perspectives of children’s palliative care in South Tyrol, Italy.

International Journal of Palliative Nursing, 21 (11) pp.542-547.

Katz, R.S. and Johnson, T.A. 2016. When Professionals Weep: Emotional and Countertransference Responses in Palliative and End of Life Care (2nd Edition). London. Routledge.

Senger, B.A. et al. 2016. The Parent Experience of Caring for a Child with Mitochondrial Disease. Journal of Pediatric Nursing, 31, pp. 32-41.

Pelentsov, L.J. et al. 2015. The supportive care needs of parents caring for a child with a rare disease: A scoping review.

Disability and Health Journal, 8, pp. 474-491.

Senger, B.A. et al. 2016. Stress and coping of parents caring for a child with mitochondrial disease. Applied Nursing Research, 29, pp. 195-201.

Coombes, L.H. et al. 2016. Health-related quality-of-life outcome measures in paediatric palliative care: A systematic review of psychometric properties and feasibility of use.

Palliative Medicine, 1–15, DOI: 10.1177/0269216316649155.

Beecham, E. et al. 2016. A call for increased paediatric palliative care research: Identifying barriers. Palliative Medicine, 1-2/ DOI:10.1177/0269216316648087.

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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 Tyˆ 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, Tyˆ 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) 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.

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.

d ebate (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. r eflection (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 Tyˆ Hafan - Head Office Hayes Road, Sully, CF64 5XX Tel: 029 2053 2245 Fax: 029 2053 2821 Charity no. 1047912