Insight vol 4 issue 1

insight

may 2017 vol 4 issue 1 ISSN 2397-799X

inside this issue: paediatric palliative care conference, october 2016 4 hospice uk conference, 2016: people, partnerships and potential 6 codeine: not what we thought. an important update 8 working in partnership to develop a pathway for blended diet administration.

10 courses, study days and conferences 14

sharing best practice in paediatric palliative care

sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

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

editorial panel

18 years of being there

insight

Mandy Brimble

Editor, Lecturer and Director of Undergraduate Studies, School of Healthcare Sciences, Cardiff University and Academic Associate at Tˆy Hafan

Tracy Jones

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

Carol Killa

Chair, Director of Care and Deputy CEO, Tyˆ Hafan

internal reviewers

Mandy Brimble, Editor, Lecturer and Director of Undergraduate Studies, School of Healthcare Sciences, Cardiff University and Academic Associate, Tyˆ Hafan Welcome to our first issue of 2017, the sixth since our launch. Feedback on Insight continues to be positive and 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.

As promised, we have a report on the Hospice UK Conference which took place last November in Liverpool. Hannah Williams and I presented our work entitled ‘Out of the wilderness: The value and meaning of a group for fathers of children with life-limiting conditions’ which was well received and elicited many questions from the audience. In addition, Elise Malpiedi presented a poster on her work on ‘Symptom Management for Children with Life-Limiting Conditions’. It is really exciting to be sharing the valuable and innovative work undertaken at Tyˆ Hafan with a national audience.

Continuing with the theme of achievements, the inaugural annual Paediatric Palliative Care Conference jointly facilitated by Tyˆ Hafan and the All Wales Paediatric Palliative Care Network was the successful culmination of months of planning and collaborative working. A report on the event is provided by Tracy Jones, Heath of Community Services and Partnerships at Tyˆ Hafan. We also have

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a piece by Dr Lizzie Bendle, Specialist Registrar in Paediatric Palliative Medicine, giving an overview of her presentation from this conference. This is an informative article which gives the rationale for recent, very important, changes in Codeine use.

Clinical colleagues in many areas of practice will find this useful.

Collaboration is also a key feature of a piece which describes the Leading Improvement in Patient Safety (LIPS) programme to develop a pathway for administration of blended diet. This is a very topical, much debated subject and will be of interest to professionals working in a range of settings.

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.

Hayley Humphries

Head of Governance and Quality, Tˆy 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 - Associate Director, Events, Gifts, Brand and Media, Tˆy Hafan Henry Dernie - Communications Creative, Tˆy Hafan

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sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

paediatric palliative care conference, october 2016

save the date...

Tracy Jones, Head of Community Services and Partnerships In October 2016, the inaugural annual Paediatric Palliative Care Conference was held at Court Colman Manor, Bridgend, South Wales. The event, which was jointly facilitated by Tyˆ Hafan and the All Wales Paediatric Palliative Care Network, was the successful culmination of months of planning by the Education and Research group of the All Wales PPCN. The aim was to offer a wide range of topics to attract a broad spectrum of professionals and areas of interest.

More than 70 delegates from across paediatric and adult palliative care sectors attended the conference, with delegates able to claim CPD points for attendance.

The conference evaluated extremely well, with 95% delegates rating the conference as excellent or good in terms of being informative and having learnt something from attending.

The conference offered sessions covering topics such as ‘Blended foods for tube fed children – a safe and realistic option?’, ‘Nausea and vomiting in paediatric palliative care’, ‘Pain management in paediatric palliative care and ‘Managing dyspnoea in children with life-limiting conditions.

Following an introduction by Dr Megumi Baba (All Wales Transition Palliative Care Consultant and Tyˆ Hafan Consultant) during which the main facets of paediatric palliative care were highlighted, delegates were treated to a very topical session on the use of blended diets in gastrostomy fed children. Dr Huw Jenkins and colleagues from both C&VUHB and ABUHB identified that Wales is leading the way in the research and delivery of blended diets and that at the heart of this topic is the professional's belief that parents have a right to choose how best to meet the nutritional needs of their children. An article exploring this topic in greater detail, by Dr Baba and Head of Quality and Governance at Tyˆ Hafan, Hayley Humphries appears in this issue.

This is likely to remain a topic of discussion for some time, as an increasing number of families known to paediatric palliative care services choose this method to feed their children.

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The often concerning symptom of nausea and vomiting in children was addressed by Dr Emma Heckford who looked at both physical and emotional causes. She explored the link between managing these symptoms well and better bereavement outcomes for families. Delegates also had opportunities to hear presentations on pain management and the uses of the ‘analgesic ladder’ (Dr Baba) and ‘Why not codeine?’ presented by Dr Lizzie Bendle (a written report of this presentation is included in this issue). Breakout sessions on a range of topics were offered to delegates, with most people having the opportunity to attend sessions covering: • Dietetic involvement in nausea and vomiting • The role of Complementary Therapy in symptom management • Pharmaceutical management of nausea and vomiting

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These short but informative sessions were delivered by a range of professionals from across health and hospice settings and again delegates evaluated these well, with over 90% of respondents scoring the sessions as excellent or good.

Planning is now well under way for the next conference which will take place on Thursday 19 October 2017.

All-Wales Managed Clinical Network in Paediatric Palliative Medicine

early years in children’s palliative care conference Thursday 19 October 2017 This year’s joint conference aims to present a variety of topics that exist within this age group and will include: • An introduction to paediatric palliative care for babies and young children • ‘Hoping for the best and planning for the worst’ • Co-ordinating care with existing multi-disciplinary teams for the child with complex needs • Advance care planning and the new All Wales PAC-plan • What services can the children’s hospice offer?

• Challenging ethical and legal dilemmas in the young child.

The conference agenda will consist of main keynote sessions with smaller breakout sessions that the candidate will be able to pre-select on booking.

“really enjoyed and learnt lots to enhance my practice”

• The role of Physiotherapy in respiratory symptom management • The practicalities of using non-invasive ventilation • The use of invasive ventilation for children with life-limiting conditions and • Managing dyspnoea at the end of life

“excellent content and well delivered"

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sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

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hospice uk conference, 2016: people, partnerships and potential

Tracey and Chris promoting the #HelloMyNameIs campaign

Hannah Williams, Community Services Manager, Tyˆ Hafan Tyˆ Hafan was delighted to have representation at the most recent Hospice UK National Conference in November 2016.

Elise Malpiedi (Clinical Nurse Specialist), Suzie Howe (Lead Nurse for Education), Mandy Brimble (Editor of Insight and Director of Undergraduate Programmes, School of Healthcare Sciences, Cardiff University) and I attended for the full three day programme. Elise was invited to present a poster outlining her research into symptom management for children with life-limiting conditions. Her poster was very well received and presented alongside a wealth and variety of other literature, including studies into workforce development, healthy environments that nurture wellbeing and ‘Death Cafe’s.

Mandy and I were privileged to be invited to orally present our research into engaging fathers of children with life-limiting conditions, entitled ‘Out of the Wilderness’. Our research received a

positive response and interesting questions relating to the success of engagement and achieving a balance in variable factors such as flexibility of service design and the personality traits of the practitioner.

The conference provided an excellent opportunity to network with likeminded professionals from across the palliative care sector and from a wide range of disciplines. The discussions and debates were varied, insightful and challenging and included Alison Killing, Architect speaking on ‘Designing for Dying’, discussing of the importance of design in enhancing wellbeing, Dr Michael Tatterton, Deputy Director of Care, Martin House Hospice, presenting his research on the experience of grandparents in paediatric hospice care and Max Watson, Medical Director, Northern Ireland Hospice, presenting the

interesting work of ‘Project Echo’ in sharing practice and innovation.

Although varied, the overall content focussed on innovative and collaborative practice to do with forthcoming challenges facing palliative care services relating to fundraising, commissioning and service demand. A highlight of the three days was listening to the determination of recently bereaved Chris Pointon and his commitment to continuing the legacy of his wife Dr Kate Granger and their #Hellomynameis campaign.

The three days offered opportunities for learning, sharing and meaningful debate and we all left having been inspired and encouraged by our colleagues from across the UK.

The #HelloMyNameIs campaign has been very successful so far and it was great to hear how Chris Pointon plans to continue the campaign. Here is the message from Dr Kate Grainger on www.hellomynameis.org.uk that explains the campaign further.

A message from Kate...

“Hello, my name is Kate Granger and I'm the founder of the #hellomynameis campaign.”

I'm a doctor, but also a terminally ill cancer patient. During a hospital stay in August 2013 with post-operative sepsis, I made the stark observation that many staff looking after me did not introduce themselves before delivering my care. It felt incredibly wrong that such a basic step in communication was missing. After ranting at my husband during one evening visiting time he encouraged me to "stop whinging and do something!"

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We decided to start a campaign, primarily using social media initially, to encourage and remind healthcare staff about the importance of introductions in healthcare.

I firmly believe it is not just about common courtesy, but it runs much deeper.

Introductions are about making a human connection between one human being who is suffering and vulnerable, and another human being who wishes to help. They begin therapeutic relationships and can instantly build trust in difficult circumstances.

In my mind #hellomynameis is the first rung on the ladder to providing truly personcentred, compassionate care. This was the first ever tweet I sent using the hashtag...

First hellomynameis tweet #hellomynameis has made over 1.6 billion impressions since its inception with an average of 6 tweets an hour. If you tweet please use the hashtag to send us pictures of your #hellomynameis activities.

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sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

codeine: not what we thought. an important update.

Dr Lizzie Bendle, Specialist Registrar in Paediatric Palliative Medicine Pain management is an important topic for all of us who care for children with life-limiting and life-threatening conditions. It is well recognised that the best pain management is achieved by combining pharmacological, physical and psychological approaches.1 There has been a recent important change in the pharmacological management of pain, specifically regarding the use of codeine in children.

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Consequently, the European Medicines Agency’s Pharmacovigilance Risk Assessment Committee (PRAC) conducted a review and then issued guidance 8, which has been widely adopted. The United Kingdom (UK) Medicines and Healthcare products Regulatory Agency (MHRA) issued guidance in 2013 which included: 9 1. Codeine should only be used to treat acute moderate pain in children older than 12 years and only if it cannot be relieved by other painkillers such as paracetamol or ibuprofen 2. Codeine should not be used in any children (ie, younger than 18 years) who undergo tonsillectomy or adenoidectomy for obstructive sleep apnoea 3. Codeine is not recommended for use in children whose breathing might be compromised

The conversion of codeine to oral morphine is 1:10, meaning that to achieve a 15mg dose of codeine, you can instead give 1.5mg of oral morphine.10 Oral morphine has a well-known safety profile and avoids the unpredictable step of liver metabolism via CYP2D6. Oramorph (liquid oral morphine 10mg/5ml) is no longer a controlled drug and so can be easily prescribed and dispensed, if indicated, for children under our care. Due to it being a suspension, small doses can safely, and accurately, be calculated and measured. All of this demonstrates that oramorph is a good pharmacological choice for ‘minor opioid’.

Finally, we must remember that codeine has been used for so long that some families and carers may be reluctant to change to low dose morphine. It is our duty as professionals to explain our reasoning and offer reassurance that it is a safe and better alternative for pain management.

4. Codeine should not be used by breastfeeding mothers The pharmacological approach to pain management often follows the World Health Organisation (WHO) recommendation of a “Pain Relief Ladder”.2 This suggests a stepwise approach to try and simplify the process of drug choice. ‘Step 1’ includes simple analgesics (such as paracetamol), ‘Step 2’ includes weak or minor opioids, and ‘Step 3’ includes strong or major opioids. Until recently, codeine was recommended and widely used as the weak opioid on ‘Step 2’ of the ladder, however this has now changed.

Some issues emerged surrounding the use of codeine in children, suggesting that it is less effective than previously thought, and actually potentially dangerous.

For codeine to be effective as a painkiller, it must be metabolised in the body and converted into morphine. This involves a threestep process.3 One of these steps occurs in the liver via an enzyme called CYP2D6. The amount of morphine ‘made’ from a dose of codeine depends on the amount of CYP2D6 that a person has.

This is genetically determined, meaning that each of us has a different amount. A person with high levels of CYP2D6 may rapidly convert one dose of codeine into a lot of morphine, whereas another person with low levels of CYP2D6 may convert the same dose of codeine into a small or negligible amount of morphine.4 Consequently, the dosing of codeine is unpredictable as we do not know if a person has high or low levels of CYP2D6, and so there can be significant under-or over-dosing of the resulting morphine.

This is particularly concerning for children, where small changes in doses can have a large effect.

If a child is under-dosed due to low levels of CYP2D6, they will have poor pain control. This will lead to distress and discomfort, and could then result in them progressing more quickly onto ‘Step 3’ of the WHO pain ladder (major opioid). Conversely, if a child has high levels of CYP2D6, they could be accidently overdosed

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and suffer from opioid toxicity (breathing difficulties, constipation, drowsiness). Unfortunately, there have been some serious cases that have highlighted this potential risk. There was a fatal case of a breast-fed baby who died from morphine toxicity following maternal use of codeine 5, and some cases of death in children who took codeine following Ear Nose and Throat (ENT) surgery.

6, 7 Understandably, these serious cases led to restrictions being placed on the use of codeine in children.

With all this in mind, practice has now changed and codeine has ‘fallen out of favour’. It seems strange that it was so popular for so long, given that it is actually metabolised in the body into morphine, so is in effect a ‘pro-drug’. This raises the question that if morphine is the end product that we want our patients to have, then why not give morphine in the first place? It is now recommended practice to give low dose oral morphine if a Step 2 ‘minor opioid’ is needed. 10

references 1. Kuttner, L. (2012) Pain: an integrative approach, in Goldman, A. et al. (eds) Oxford Textbook of Palliative Care for Children. 2nd ed. Oxford: Oxford University Press

6. Ciszkowski C, et al. (2009) Codeine, Ultrarapid-Metabolism Genotype, and Postoperative Death. N Engl J Med 2009; 361:827–28 and

2. World Health Organisation (1998). Guidelines for analgesic drug therapy. In Cancer pain relief and palliative care in children, pp.

24-8. WHO/IASP, Geneva

7. Kelly LE, et al. (2012) More codeine fatalities after tonsillectomy in North American children. Pediatrics 129 (5): 1343–46

3. Drake, R et al. (2012) Pharmacological approaches to pain.

2: Simple analgesics and opioids, in Goldman, A. et al. (eds) Oxford Textbook of Palliative Care for Children. 2nd ed. Oxford: Oxford University Press 4. Williams, DG et al (2002) Pharmacogenetics of codeine metabolism in an urban population of children and its implications for analgesic reliability. Br J Anaesth; 89(6): 839-45 5. Koren et al. Pharmoacogenetics of morphine poisoning in a breastfed neonate of a codeine-prescribed mother. The Lancet; 368 (9536):704

8. European Medicines Agency: Restrictions on use of codeine for pain relief in children – CMDh endorses PRAC recommendation.

28 June 2013. EMA/385716/2013 9. Codeine for analgesia: restricted use in children because of reports of morphine toxicity. Drug Safety Update vol 6 issue 12, July 2013:A1 10. Jassal et al. 2015. The Association of Paediatric Palliative Medicine Master Formulary, 3rd Edition.

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involvement in the leading improvement in patient safety (LIPS) programme to develop a pathway for blended diet administration in the hospice and school setting.

Hayley Humphries, Head of Governance and Quality, Tyˆ Hafan, Dr Megumi Baba, Consultant in Paediatric Palliative Care, Tyˆ Hafan Children’s Hospice /CVUHB, Paula Davies, Lead Nurse, Community Child Health Directorate, CVUHB, Susan Dinsdale, Team Manager, CCNS, Community Child Health Directorate, CVUHB, Katie McCormick, Paediatric Community Dietitian, CVUHB, Viv Elliott, Paediatric Dietitian, CVUHB, Debs Morris, Specialist Nurse, Community Child Health Directorate, CVUHB

LIPS IN

Children who are enterally fed via gastrostomy have historically received proprietary feeds to ensure safe administration of feeds that are sterile, nutritionally balanced and of a safe consistency to pass through the feeding equipment and gastrostomy device in situ 1.

During the past few years, an increasing number of parents have challenged the benefits of prescribed proprietary feeds for various reasons. Some have attributed an increase in their children’s gastrointestinal symptoms such as nausea, vomiting, constipation and perceived intolerance to feeds to be the effect of prescribed feeds, leading to an overall negative effect on their system. In addition, parents who have made moves to trial blended foods for their children, have reported not only an improvement in these symptoms, but also their general health, wellbeing and quality of life, an improvement in their weight gain and a sense of inclusion into family lifestyles and choice of foods enjoyed by all family members.

Parents began administering blended foods to their children based on their experiences and the desires for their child to achieve an optimum health status. However, as a practice with limited clinical evidence base, few agreed policies and procedures and the current recommended practice being proprietary feeds to ensure optimum nutrition 2,3,4, professionals were not able to undertake blended feeding administration within their scope of practice. With nurses and dietitians in the community and the hospice receiving more and more requests to facilitate this method of feeding, a group of interested professionals looked to address this issue by identifying a pathway that would enable gastrostomy-fed children to be managed safely by professionals in partnership with parents at special schools and the children’s hospice locally.

collaborative working Following several senior meetings and working project group meetings exploring blended feeding, the Community Child Health Directorate lead nurse collaborated with the Patient Safety and Quality team in Cardiff and Vale UHB to undertake their projectfocussed programme ‘Leading Improvements in Patient Safety’ (LIPS). The programme was devised to assist multi-professional groups in designing solutions and outcomes to an issue or problem that had been highlighted in practice across varied sectors and which included community nurses, dieticians and the hospice setting. This resulting working group consisted of the Lead Nurse and manager from community children’s service, dietitians, hospice nurse/Head of Quality and Governance, enteral feeding nurse specialist and a paediatric palliative care consultant.

Over the course of eight sessions, spanning four months, the LIPS programme enabled the group to define their objectives in identifying the barriers and opportunities in providing blended food through a gastrostomy feeding tube. The programme provided all participants the opportunity of honing in on their own skills and abilities in project management and leadership; requisite skills when negotiating a change within the context of an organisational framework balanced against maintaining relationships with parent’s needs and beliefs for the best interests of their child 1,2.

The ultimate aim was to develop an agreed pathway, to ensure safety and efficacy of this practice, by professionals delivering the care in each of the settings. An acknowledgement that parts of the process were already underway helped the group to focus on the elements that were missing – that of parental understanding of what would be required to initiate the development of an individual risk assessment, staff training and professional management. The most significant part of the process required was that of paediatric consultant level endorsement and dietetic involvement from the outset.

TY PA T IE N T S A F E

quality improvement project on developing a process to enable safe administration of blended diet to children having gastrostomy tube feeds in special school and hospice settings Megumi Baba, Hayley Humphries, Paula Davies, Susan Dinsdale, Katie McCormick, Viv Elliott, Debs Morris aims and objectives

findings

To enable Gastrostomy-fed children, whose parents choose to give blended food, to be managed safely by professionals in partnership with parents at Special Schools and Children’s Hospice locally.

The stakeholders were identified (fig. 1), fishbone cause and effect diagram identified barriers and opportunities for safe administration of blended diet (fig. 2) and impact analysis questionnaire identified specific anxiety among the special school nurses in providing BD which could potentially be a barrier to providing BD (fig. 3)

To identify the barriers and opportunities in providing blended food through enteral-feeding tube and develop an agreed pathway to ensure safety and efficacy of this practice.

scenario stakeholders (fig. 1) public and

background

RCN/ NMC

BAPEN

environmental health

UHB ethics

blended diets

tyˆ hafan

There is increasing interest among parents in providing blended food to their children through the tube. Parents often report improvement in symptoms and quality of life.

enteral feeding manufacturer

catering

WAG and children’s community

community child health dietitians

Fishbone cause and effect diagram (fig. 2) problem

place

patient

not best practice

hospital community

tube manufacturers

tyˆ hafan

lack of evidence special school BDA

referral

NMC

methods

education MDT and risk assessment

RCN

A group of interested professionals, including lead nurse and manager from community children’s service, dietitians, hospice nurse/ head of quality and governance, enteral feeding nurse specialist and a paediatric palliative care consultant have address this issue on the local NHS safety and quality improvement project programme (LIPS).

parental choice

procedure

politics

dietitians nurses education

catering staff

people

Issues Identified by Nursing Staff Special School

100%

10

50%

6 4 2 0

number of children count

registration risk

risk of tube blockage

cumulative percentage

0%

The multiagency group was able to develop an agreed care pathway and procedures to enable children to continue receiving blended food through gastrostomy-feeding tube in school and hospice. Full implementation of the pathway will follow, eventually to include home and hospital settings. Data collection through the pathway will add to the evidence base for the impact of blended diet on gastrostomy-fed children’s quality of life. references

ŷ ŷ

Fig. 4 - Process map for initiating and continuing blended diet through a gastrostomy feeding tube

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“… I think it’s brilliant that you are doing this and again I would like to thank you and the team of people involved for helping changing my sons life and ensuring he has the best quality of life possible”. conclusion

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Over the course of three months the group learnt to use various tools such as Fishbone Cause and Effect diagram, Stakeholders Diagram, Pareto Chart and Process Map, which were used to identify the key issues and to plan for the changes in practice. A PDSA cycle was completed to test the changes.

1st Cycle Practice run with cateringstaff and nursing staff - modified plan.

2nd Cycle plan act Child A in 1 school 3rd Cycle do study Child A in Tyˆ Hafan 4th Cycle Child B Tyˆ Hafan (not yet accessing school) Ongoing Study Regular measuring and monitoring • Blended diet now administered in school and Tyˆ Hafan • No adverse events • Staff assessed as competent • Reduced staff apprehension • Parent satisfaction

safe administration of blended diets in school and respite

Pareto Chart: Problems identified by Impact Analysis Questionnaire. (fig. 3) 12

What changes can we make that will result in an improvement?

Outcome

feed intolerance

benchmarking

• Monitor adverse incidents rate, eg tube blockage, • Collect dietetic data locally at regular intervals (BDA monitoring tool), • Monitor Staff Competence, • Measure Family Satisfaction (patient stories)

Test changes (PDA cycle) paediatric consultants

child, young person, family

children’s nurses

GPs

As a result Increasing number of requests are being made to the nurses in the community for its provision at school and hospice as well as home, when there is limited clinical evidence base(1,2), few agreed policies and procedures(3-5) and the current recommended practice remains proprietary feeds to ensure optimum nutrition(3).

well child

BDA

children’s hospital

How will we know that a change is an improvement?

• Benchmarking within NHS and independent sector to expand knowledge base.

• Develop a robust pathway and protocol to be agreed through UHB and Tyˆ Hafan governance groups.

• Individualised risk assessment.

• Training and Competency Package.

• Small change PDSA cycles.

• Ongoing monitoring and collection of outcome data.

A process map (fig 4) was drawn up for a trial.

Many children with life-limiting conditions are fed through a gastrostomy tube. There are 160 children in Cardiff and Vale who are fed by this method.

introduction

IMPROVE M ING EN AD T

working in partnership with multi-disciplinary professionals –

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sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

1.Coad J et al. Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence. Arch Dis Child 2016-311030 2.Brown S. Blended food for enteral feeding via a gastrostomy.

Nursing Children and Young People. 2014;26(9):16-20 3.British Dietetic Association Policy Statement, May 2013. [Available from https://www.bda.uk.com/improvinghealth/healthprofessionals/liquidised_feeds] 4.British Dietetic Association. Practice Toolkit:: Liquidised Food via Gastrostomy Tube. 2015 [Available from https://www.bda. uk.com/professional/practice/liquidisedtoolkit] 5.Leicester Partnership NHS Trust. Administration of liquidised diet via a gastrostomy buttons. Family, Young People and Children’s Division. 2015 [Available from file:///C:/Users/mbaba/Documents/Leicester%20BD%20guideline.pdf]

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sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

Not only did the LIPS programme serve to assist the group in practical, analytical thinking, various tools such as the Fishbone Cause and Effect diagram, Stakeholders diagram, Pareto Chart and Process Mapping were utilised used to identify the key issues and to plan the practice changes. Four key components of the care pathway were identified as a Multi-disciplinary team meeting, an individualised risk assessment, staff training and monitoring procedures. During the group’s project journey, a questionnaire was devised to ascertain healthcare professional’s experiences and anxieties of training, development and service delivery for children having blended feeds in the special school setting and the hospice. The group also thought about the many stakeholders that may be involved in assisting parents in reaching their objectives in enabling their children to be fed by their chosen method. All aspects were threaded into a robust pathway that made the process of initiating and continuing blended feeding through a gastrostomy feeding tube.

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Finally, in order to test the pathway feasibility, a PDSA (Plan, Do, Study, Act) cycle was completed to test the changes that resulted in having a clear pathway structure in place and ultimately ensure safety in the care being delivered to children and young people.

The entire programme focussed the team in working to achieve the end result efficiently and effectively in a fun and informal way.

conclusion At present, the children’s community team and the hospice continue to receive requests for implementation of blended diet in their individualised care provision. Moreover, other health boards are requesting assistance to implement the pathway that will enable children within their areas to receive support and provision of blended feeding. It is anticipated that this model and approach will extend further and eventually include home and hospital settings. The LIPS programme has served as a driver for collaborative working in areas of practice that require careful management in often innovative and challenging ways. It also ensures that service users driving change are placed at the centre of improvements in practice.

references 1. Brown S. Blended food for enteral feeding via a gastrostomy. Nursing Children and Young People. 2014;26(9):16-20 2. Coad J et al. Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence.

Arch Dis Child 2016-311030 3. British Dietetic Association Policy Statement, May 2013.

[Available from https://www.bda.uk.com/improvinghealth/healthprofessionals/liquidised_feeds] 4. British Dietetic Association. Practice Toolkit: Liquidised Food via Gastostomy Tube. 2015 [Available from https://www.bda.uk.com/professional/practice/liquidisedtoolkit] 5. Leicester Partnership NHS Trust. Administration of liquidised diet via a gastrostomy buttons. Family, Young People and Children's Division. 2015 [Available from file:///C:/Users/mbaba/Documents/Leicester%20BD%20guideline.pdf]

publications of interest Allen, A (2016) Consistency in end of life care. Nursing Children and Young People, 28 (8), pp 8 – 9.

Evans, N (2017) Strategic thinking: end of life care.

Nursing Children and Young People, 29 (1), pp 8-9.

Bennett, H et al. (2016) Partnership working between hospice and children’s community nursing teams. Nursing Children and Young People, 28 (9), pp. 26- 30.

Håkanson, C et al (2017) Place of death of children with complex chronic conditions: cross-national study of 11 countries. European Journal of Pediatrics. Doi:10.1007/ s00431-016-2837-0

Carter, B (2016) Perseverance and parents of children with complex health care needs: Unsung heroes. Journal of Child Health Care, 20 (3), pp. 265-266.

Carter, B & Bray, L (2016) How caring for a child with complex health needs can be both isolating and extraordinary.

The conversation (online) http://theconversation.com/howcaring-for-a-child-with-complex-health-needs-can-be-bothisolating-and-extraordinary-66651

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Hill, K (2016) Respite services for children with life-limiting conditions and their families in Ireland. Nursing Children and Young People, 28 (10), pp. 30 – 35.

Jarvis, S et al (2016) How many children and young people with life-limiting conditions are clinically unstable? A national data linkage study. Archives of disease in childhood, 102 (2), http://adc.bmj.com/content/102/2/131

new guidelines launched for end-of-life care for children The National Institute for Health and Care Excellence (NICE) has opened a consultation on the draft quality standard for end of life care for infants, children and young people with life-limiting conditions.

The quality statements cover a range of topics including:

The draft quality standard consists of six quality statements that set out the priority areas for quality improvement in end of life care for children. This follows the publication of the NICE clinical guidance in December 2016.

• Bereavement support before and after the death of a child.

• Advanced care plans.

• 24-hour access to paediatric nursing care.

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sharing best practice in paediatric palliative care. may 2017 volume 4 issue 1

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courses, study days and conferences courses Cardiff University

University of South Wales

Coventry 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

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/

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/coursestructure/health-and-life-sciences/ cpd/an-introduction-to-childrenand-young-peoples-palliative-andcomplex-care/

Palliative Medicine for Health Care Professionals (MSc). More information available at: http://www.cardiff.ac.uk/ study/postgraduate/taught/courses/ course/palliative-medicine-for-healthcare-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: www.cardiff.ac.uk/ healthcare-sciences/courses/ courses-for-professionals/ clinical-practice-modules/end-of-lifecare-health-care-professionals-hc3127

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study days

conferences

Paediatric Palliative Care Study Day. Thursday 19 October 2017. 9:00am - 4:00pm. The Royal Marsden NHS Foundation Trust, Education and Conference Centre, The Royal Marsden NHS Foundation Trust, Stewart’s Grove, London, SW3 6JJ. Contact email: conferencecentre@rmh.nhs.uk, Phone number: 020 7808 2924. Price: Standard rate £120 per delegate - (Early Bird Rate £100 ends 31 July 2017). The day will update practitioners on current practice in managing this patient group and where possible the evidence base to inform practice. It will raise awareness of issues specifically related to children’s palliative care. This study day is for Children’s Nurses, Community Children’s Nurses, Children’s Hospice Nurses, Allied Health Care Professionals and for doctors with an interest in CYP palliative care. More information available at https://www.royalmarsden.nhs.uk/ news-and-events/conference-centre/ study-days-and-conferences/childrenand-young-people-oncology

The 8th International Paediatric Palliative Care Conference “Worlds apart: culture and context in caring for the whole child”.

26 – 28 July 2017, Cardiff University, Wales, UK. Conference Chairs: Dr Richard Hain, Professor Daniel Kelly and Professor Julia Downing. The cost of registration is £289 for the full three days. Online booking will be going live at the beginning of March, but if you would rather book using a form and/or invoice, they are available.

For this or any other enquiry, just email PPC2017@cardiff.ac.uk .

More information available at http://www.icpcn.org/cardiffppc2017/

8th APPM Paediatric Palliative Care study day. Friday 24 November 2017, 30 Euston Square, London. Annual study day with presentations, discussions and workshops on key issues in paediatric palliative medicine. The APPM Annual General Meeting will also take place during the day. Cost: Non APPM £180, APPM £170 Early bird £170/160. Provisional themes for 2017: Neonatal palliative care, NICE guidance, Prescribing updates, Research, Ethics, Specific conditions and cases. More information available at: http://www.appm.org.uk/15.html

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. More information available at http://www.iphpc2017.com/

research participants call There is an opportunity to be involved in a PhD study based at Cardiff University’s School of Healthcare Sciences. Dawn Pickering’s PhD study ‘VOCAL’ is seeking participants who are children or young people with cerebral palsy aged between 9-16 years who use a walking aid or are unable to walk. Dawn especially wants to represent all ‘voices’ of children and young people and will work with parents and carers to include those who do not have a physical voice.

Based upon Article 31 of the United Nations Convention on the Rights of the Child which state that all children and young people ‘have the right to rest, leisure, play and recreation and to take part in cultural and artistic activities’ http://www.playwales.org.uk/eng/ Dawn especially wants to hear from those who find participation difficult.

If you would like to be involved please contact Dawn Pickering: Telephone number: 02920 687741 Email: pickeringdm@cf.ac.uk

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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.

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