Information for Professionals

1. NICE Guidance for End of Life Care for Infants, Children and Young People

Helen & Douglas House were involved in writing this national guideline and the linked quality standards. The video clips and blogs attached below illustrate the guidance and how it is supported at Helen & Douglas House.

Read > End of Life for Infants, Children and Young People – Nice Guidance (NG61) Dec 2016

• National Guideline for delivery of palliative care for children. Read the full guideline here.

Read > End of life care for infants, children and young people – NICE Quality Standard (QS160)

• Published date: 12 September 2017. Read the full guideline here.

These quality standards follow on from the 2016 NICE guidance and help providers of palliative care to evaluate and develop their practice. 

Read > End of life care for infants, children and young people with life-limiting conditions: summary of NICE guidance. Villanueva G, Murphy MS, Vickers D, Harrop E, Dworzynski K. BMJ. 2016 Dec 8;355:i6385. doi: 10.1136/bmj.i6385. PMID: 27932317

Helen & Douglas House contributed to this summary of the NICE Guidance which you can find in here. 

Other useful resources:

• • Watch ‘The role of play therapy in end of life care for children’ from the National Institute for Health and Care Excellence (NICE). 
  • Watch ‘The role of music therapy in end of life care for children’ from the National Institute for Health and Care Excellence (NICE). 
  • Watch ‘Support at the end of life – Roy’s story’ from the National Institute for Health and Care Excellence (NICE). 
  • Watch ‘Support at the end of life – Amana’s story’ from the National Institute for Health and Care Excellence (NICE). 
  • Read ‘Raising children’s spirits’ by Stephen Harrison and Paul Nash.
  • Read ‘Home is where the heart is’ by Karen Bromley.
  • Read ‘Getting to the right place for the final time’ by Dr Deirdre O’Shea and Dr Emily Harrop.

2. Together for Short Lives Perinatal Pathway for Babies with Palliative Care Needs (May 2017) 

The Together for Short Lives pathway for Neonatal Palliative Care was changed to a pathway for Perinatal Palliative Care allowing better support for parents expecting a baby with a life-limiting illness. This was done in line with NICE guidance and was co-authored by Helen & Douglas House. Read the pathway here.  

3. Association of Paediatric Palliative Care Master Formulary, 1st, 2nd, 3rd, 4th & 5th Edition 

• (2012-2019) Jassal S, Aindow A, Anderson AK, Brook L, Craig F, Hain R, Harrop E, Lapwood S, Lidstone V & McCulloch R. Find the Formulary in here. 

Helen & Douglas House Doctors were two of the authors of this the medicines formulary that is used to prescribe for children with Palliative Care needs nationally (and sometimes internationally).

4. A Care Pathway to Support Extubation Within a Children’s Palliative Care Framework (ACT), Cottrell S, Harrop E, Lapwood S, McNanamara-Goodger K & Thompson A, March 2011

Helen & Douglas House hosted this pathway for ACT (predecessor to Together for Short Lives). We worked in close collaboration with teams from all over the country working in paediatric intensive care, neonatal intensive care and palliative care to produce a guideline which now shapes the practice of withdrawing life-sustaining treatment outside of hospitals. Read the full document in here. 

5. Thames Valley Long Term Ventilation Pathway and Standards

These are the Pathway and standards to support the safe care of ventilated children, developed with input from Helen & Douglas House, working with the Academic Health Science Network and Thames Valley Paediatric Palliative Care Network. Read the full document in here. 

We are particularly proud that staff from all areas of our multidisciplinary team have been involved in this publication, including nurses, doctors, trustees, as well our service users and their families.

An article looking at the best ways to support postgraduate researchers in our field.

Undertaking Doctoral Research with Children and Young People with Life-Limiting or Life-Threatening Conditions. Harris N, Blackburn M, Noyes J, Aldridge J, Lapwood S, Dunbar H, Proce J, Mitchell S, Chambers L & Bluebond-Langner M. J. Adv Nurs May 2019. 

Communication with children and adolescents about the diagnosis of their own life-threatening condition. Stein A, Dalton L, Rapa E, Bluebond-Langner M, Hanington L, Stein KF, Ziebland S, Rochat T, Harrop E, Kelly B, Bland R; Communication Expert Group. Lancet. 2019 Mar 16;393(10176):1150-1163. doi: 10.1016/S0140-6736(18)33201-X. Epub 2019 Mar 14. Review. PMID: 30894271. This review is an international collaboration, examining the best ways to talk to children about life-limiting illnesses. 

Towards developing an ethical framework for decision making in long-term ventilation in children. Ray S, Brierley J, Bush A, Fraser J, Halley G, Harrop EJ, Casanueva L. Arch Dis Child. 2018 Jun 5. pii: archdischild-2018-314997. doi: 10.1136/archdischild-2018-314997  

This paper seeks to help healthcare professionals faced with challenging decision making in the face of requests for long term ventilation – addresses some of the issues raised by cases such as Charlie Gard and Alfie Evans. Collaboration with Great Ormond Street and the Royal Brompton Hospital.

Fifteen Minute Consultation: Developing an Advance Care Plan in Partnership with the Child & Family. Harrop E, Boyce K, Beale T & Brombley K (2018) Arch Dis Child Educ Pract This articles guides healthcare professionals in making advance care plans in line with NICE guidance. It is illustrated by the experience of two bereaved HDH parents, who are co-authors.

Comment: Why there should be a national funding strategy for community children’s palliative care (2018) Schwaebisch S Nursing Children & Young People 

This is a really excellent piece written by Sabine, Learning Disability Nurse from HH, explaining the importance of coherent funding for palliative care outside of a hospital setting, contributed to by many of the care team.

Blended foods for tube-fed children: a safe and realistic option? A rapid review of the evidence. Coad J, Toft A, Lapwood S, Manning J, Hunter M, Jenkins H, Sadlier C, Hammonds J, Kennedy A, Murch S, Widdas D.Arch Dis Child. 2017 Mar;102(3):274-278. Literature review to support the family directed practice of feeding blended ‘real’ food via gastrostomy. This was important in advocating the practice for families who had faced resistance. 

Promoting high quality research with life-limited children and their families: Establishment of a joint research group between Together for Short Lives and the Association for Paediatric Palliative Medicine.  Bluebond-Langner M, Chambers L, Lapwood S, Noyes J.   J Adv Nurs. 2017 Feb;73(2):283-285. 

Paper detailing the process of setting up the Together for Short Lives research group, in which we have been very active partners. 

Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care: an exploratory survey. Harrop E, Jamieson L, Choy TH, Ho WHP and Wong ICK, (2017) BMJ Support Palliat Care doi: 10.1136/bmjspcare-2017-001413 

This paper is a collaboration with the London School of Pharmacy examining the problems faced by professionals prescribing pain medication for dying children, in order to try to overcome these issues and provide better pain relief.

Fifteen Minute Consultation: Practical Pain Management in Paediatric Palliative Care. Harrop E, Brombley K & Boyce K (2017) Arch Dis Child Educ Pract Ed. Oct;102(5):239-243.

Here we use the family experience to illustrate the challenges of managing complex pain in palliative care. We talk about how professionals might approach the problem from assessment to treatment.

Fifteen Minute Consultation: Perinatal Palliative Care Sidgwick P, Harrop E, Kelly B, Todorovic A & Wilkinson D (2016) Arch Dis Child Educ Pract Ed. 2017 Jun;102(3):114-116 PMID: 27849163

Article written with a bereaved HDH parent, explaining the importance of antenatal palliative care, and the benefits to her family. 

Palliative medicines for children – a new frontier in paediatric research. Jamieson L, Wong IC, Craig F, Christiansen N, Brombley K, Tuleu C, Harrop E. J Pharm Pharmacol. 2017 Apr;69(4):377-383 PMID: 27739059

Collaboration with the London School of Pharmacy and Great Ormond Street to spell out the challenges of researching the use of medicines in children with palliative care needs. This should support the funding of further research.

The Spectrum of Children’s Palliative Care Needs: a classification framework for children with life-limiting or life-threatening conditions. Shaw KL, Brook L, Mpundu-Kaambwa C, Harris N, Lapwood S, Randall D. BMJ Support Palliat Care. 2015 Sep;5(3):249-58.

Important tool for mapping the journey of children through the stages of palliative care. Now widely used for research and service development. Choice of antibiotic use for chest infections in the child / young adult hospice population, are we getting it right? Smith F, McKeith E & Harrop E (2014) Together for Short ‘Relay’ 4th Edition 

We reviewed our practice for the local use of antibiotics in our particular population and discussed this with a range of experts in microbiology and respiratory paediatrics. Browse Together for Short Lives professional resources and research archive of academic research. 

Pain care for patients with epidermolysis bullosa: best care practise guidelines Goldschneider KR, Good J, Harrop E, Liossi C, Martinez A, Maxwell G and Stanko-Lopp D (2014) BMC Medicine 12: 178

Review of the evidence to improve the management of complex severe pain in rare and devastating skin disease. The manuscript was also reviewed by two DH patients with the condition.

How and when to refer a child for specialist paediatric palliative care Harrop E & Edwards C (2013) Arch Dis Child Educ Pract 98:202-208

Collaboration between the CEO (Clare) and the medical team to explain to paediatricians in secondary care the ways that they may interface with specialist palliative care (including hospice care) – helpful in supporting understanding of paediatric palliative care, as a relatively new speciality. 

Journey from paediatric intensive care to palliative care Gupta N, Harrop E, Lapwood S & Shefler A (2013) J Pall Med 16(4): 397-401

Collaboration with local Paediatric Intensive Care Unit describing the journey of 12 children who had been transferred to hospice care. 

Learning from paediatric palliative care: lessons for adult practice Spathis A, Harrop E, Robertshaw C, Elverson J & Lapwood S (2012) Palliat Med 26:777-779

Collaboration between adult palliative care, general practice and paediatric palliative care, to examine our differences and similarities and to share learning. 

Helen & Douglas House have presented the following work at National / International conferences.

An approach to gaining insight to parental experience of perinatal end of life care Sidgewick P & Harrop JE (2015) Oral presentation at 7th Cardiff International Conference in Paediatric Palliative Care

Interview based research project comparing the experiences of families whose babies had died in the hospital or in the hospice

Providing information for parents about transitional care available outside the neonatal unit, Crowley N & Harrop E, Archives of Disease in Childhood Apr 2015, 100 (Suppl 3) A258-A259; DOI: 10.1136/archdischild-2015-308599.520

Project looking at how best to provide information to families on the neonatal unit about palliative/hospice care.

Any time, any place, anywhere: offering specialist palliative care to paediatric oncology patients.  Harrop E & Brombley K (2014) Arch Dis Child: 99 (Suppl 1): A190

Paper detailing the ways in which HDH has supported care accords settings to meet family choice for end of life care in children with cancer. 

Neonatal Palliative Care Sans Frontieres Sidgwick P, Hughes G, Brombley K & Harrop E (2014) Arch Dis Child:99(Suppl 1):A53

Paper explains the importance of offering parents the chance to leave the hospital with a baby in need of end of life care. Based on 10 cases shared locally between HDH and the neonatal unit.  

Evaluation of the role played by parent representatives within our local paediatric palliative care network E Harrop & Bridget Taylor, presented to Help the Hospices Conference, Bournemouth, 2013

Research into the contribution made by the parent representative at the regional paediatric palliative care network. Conducted at the request of the parent rep as she approached the end of her term, with her collaboration. Presented nationally and held up as an example of good practice.

Advance Care Planning for children and young people with palliative care needs. Brombley K & Harrop E (2013) Poster presentation at 13th World Congress of the EAPC in Prague: Palliative Care – the right way forward  

International Conference presentation about the challenges of advance care planning with suggestions for how these might be addressed. 

Palliative care needs in Juvenile Huntingdon’s Disease Harrop E, presented to EAPPC meeting in Rome Nov 2012

The families of five patients with a rare condition shared their stories about facing challenging symptoms. We discussed how these might be approached, and talked about what had worked best in practice. This was discussed with the Huntingdon’s Society UK.

Improving equity and transparency in the assessment of complex referrals: the development of an assessment tool for children in ACT category 4, E Harrop, K Brombley, L Middleton, W Aubrey & M Boydon, Together for Short Lives Conference Oct 2012

The referrals team at HH worked with us to develop a ‘traffic lights’ based system for assessing complex referrals for children with acquired brain injury. These had been the most difficult group to assess at referral previously. This was used to inform those making referrals.

Sex, drugs and the role of the ethics committee in hospices for children and young adults, E Harrop (2012) Arch Dis Child 2012;97(Suppl 1):A167

This work was undertaken to examine the nature of the work addressed by HDH ethics committee. It helped to shape the work of the committee and to make the case more widely for the use of clinical ethics advisory groups in paediatric palliative care. 

DIPPER – funded by a grant from NIHR Research for Patient Benefit 

Feasibility of a randomised clinical trial of transmucosal diamorphine vs oral morphine for breakthrough pain in children and young people with life-limiting conditions. Acronym: DIPPER (DImorphine Paediatric Palliative Evaluation of feasibility of Randomised controlled trial)

This project is a collaboration over 10 centres, looking at the ways that it might be possible to research the use of rapidly acting, needle-free pain relief for children choosing to receive an end of life care at home. There is currently no clear evidence to guide us, leaving children vulnerable to poor practice. Emily is a co-applicant. The project is hosted at London School of Pharmacy. Lay summary: Diamorphine can be easily given under the tongue, up the nose, or into the cheek pouch (transmucosally), where the rich blood supply absorbs it almost as quickly as an injection. This study looks in detail at a possible future research project to show how successful diamorphine is when given transmucosally, compared to the usual treatment with morphine by mouth. Talking with children, families and those treating them, we will aim to find out their views about using diamorphine in the ways suggested, what they feel most comfortable with and their feelings about taking part in research to decide whether or not diamorphine is good for breakthrough pain. We will look at how best to measure pain and quality of life for these children. Lastly, we will check out the safest and most useful dose to test. We will also have support from a skilled parent representative at every stage of this project.

PARAMOUNT (Paediatric Palliative Care Pain Management Community) – funded by GOSH /Sparks 

This project examines End-of-Life pain management by carers and healthcare professionals in infants, children and young people in out of hospital settings. It will use the patient and professional experience to shape the development of a tool for evaluating symptoms and their treatment. This is hosted at Southampton University, Emily is a co-applicant.

Lay Summary: We would like to hear about the practical and emotional challenges experienced by carers and healthcare professionals (HCPs) when managing medicines for pain relief for infants, children and young people (ICYP) being cared for at the end of life (EoL) outside the hospital. We also want to develop a draft, structured educational tool designed to support and educate carers and HCPs to managing the pain of ICYP at the end of life. The tool will contain basic information relating to pain but will also be tailored for individual families according to both the carer’s and the patient’s needs. We envisage this will be in a paper format which can be shared with healthcare professionals and with other carers. Problems with the assessment of pain and pain medications can be recorded as they arise so that the tool can be constantly refined and updated periodically.

PhD Student – Bethan Paige (Department of Psychology, University of Oxford)

We are supporting Bethan, who has ethics approval to talk to HH families about their experiences of delivering technologically complex care at home. She is linked to the Academic Health Science Network patient safety group. She seeks to examine the burdens placed on families and to examine the patient safety implications. This has led to HDH being involved in the development of forward-looking strategies to support families delivering care at home.