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The East of England Children and Young People's Palliative Care Service Directory click here

This directory contains contact details and a brief description about the services provided by organisations in the Eastern Region for children and young people who have been diagnosed with life limiting or life threatening conditions. The directory is primarily for families and carers, however it is also a useful resource for professionals working within palliative care.

Managing Symptoms at Home click here to download

This booklet has been written for parents and carers of children receiving palliative care. The booklet is to give them information about commonly occurring symptoms, their causes, available treatments and suggestions for simple things that can be done at home to help their child. It also includes information on services available and an explanation of how care should be organised with them. Written by Alison Dowsett and the Paediatric Oncology Palliative Care Team (Cambridge University Hospitals Foundation Trust) in collaboration with CCLG Publication Committee, this can be downloaded from the above website.

NHS West Midlands e-learning resource on Paediatric Palliative Care click here

This e-learning package is based on the RCPCH Curriculum in Paediatric Palliative Medicine prepared by the Education Subgroups of the British Society for Paediatric Palliative Medicine and the Association of Children's Hospice Doctors. The project has been designed to enhance the training and education required to deliver high quality paediatric palliative care wherever the child or young person and their families happens to be. You are free to view these materials without taking the assessment, all you need to do is register yourself.

Together for Short Lives click here for website
Together for Short Lives is the UK charity for children with life-threatening and life-limiting conditions and all those who support them. The website provides help for families, services and professionals including details of events and training, resources, and care pathways.
Hospice UK click herefor website

Hospice UK is the UK charity for hospice care. The website provides information and support for patients, carers, and those with an interest in hospice and palliative care.

Palliativedrugs.com 

Palliativedrugs.com provides independent information for health professionals about drugs used in palliative care. It includes unlicensed indications and routes, and details about the administration of multiple drugs by continuous subcutaneous infusion.

Leader Alliance for the Care of Dying People - Interim Statement 2014

Click here for further information: Joint statement by the Leadership Alliance for the Care of Dying People and LACDP Interim Statement


An Evaluation of an Innovative Service Approach to the Provision of 24/7 Care and Support in Children's Palliative Care, Dr Linda Maynard, 2012

This 2012 study evaluated a new service, funded by a national charity and hosted by a children’s hospice service, providing 24/7 care for children with life-threatening and life-limiting conditions and their families. Objectives of the service were to provide: symptom management support; open access to families and professionals; choice in place of care and death and collaborate with others to develop common approaches, shared pathways and management plans. Findings demonstrated that the Team filled a critical gap and met its pre-set standards. Families valued the role which enabled choice in location of care and perceived the Team as a lifeline.



Libraries

EACH Library

The EACH Library, based in Milton in Cambridge, is a specialist collection of around 2,500 resources, relating to all aspects of caring for children with severe disabilities, complex health needs and life limiting conditions.

With a web based catalogue and related pages, the library is available to staff working in the NHS, Social Care, Education or Voluntary sectors in East Anglia.

Membership is free and all members have access to services that include:

  • Browsing & requesting resources via the online catalogue
  • Renewing resources online
  • Ordering of journal articles
  • Requesting work related literature searches

Advice on accessing NHS electronic resources

Contact the library for a registration form and more details:

Librarian – Sue Langley

Email: sue.langley@each.org.uk

Tel: 01223 815103 Fax: 01223 863871

East of England Libraries Network

East of England Health Libraries is a network of 29 NHS libraries in the east of England. It provides free access to books, journals and online resources to all NHS staff and students.

All health and social care staff, including non-clinical,managerial, administrative and clerical staff, and students on placement, are welcome to use whichever of the EEL libraries is most convenient to them. EEL covers Norfolk, Suffolk, Cambridgeshire, Essex, Bedfordshire and Hertfordshire.

EACH Current Awareness click here

The latest books, reports and journal articles available from East Anglia's Children's Hospices (EACH) Library & Information Service.You can search the blog by date or by topic

  • When we first heard about the hospice we were apprehensive because we didn’t know what to expect. When we got there we realised it was a lovely place where Renee would be well looked after, and we would be able to have a much-needed break. Stacy, Renee’s mum
  • We arrived at the hospice feeling scared and alone. We had so many questions – they answered them all and more. Claire, Jacob’s mum
  • EACH has helped us keep Stanley’s memory alive. And allows us to look to the future Brad, Stanley's Dad
  • The play specialists are excellent and I also get inspiration from the activities they organise. Heather, Lucy’s mum
  • Renee loves going to The Treehouse, but it’s great that care staff are also able to visit us at home too. Stacy, Renee’s mum
  • We are also supported by the 24/7 True Colours nurses and it’s so reassuring knowing we can call on them whenever we need support or advice Helen, William’s mum
  • I really love going to the hospice. I’ve made friends there and get to do loads of fun stuff. Renee
  • It’s been a great opportunity to meet other parents in a similar situation, something that doesn't really happen anywhere else. Helen, William’s mum
  • EACH helps us to create lovely memories and has played an important part in all of our lives, not just Lucy’s. Heather, Lucy’s mum
  • I can’t imagine what it would have been like. Nobody should have to, every family should be offered the support we were, and are still getting Claire, Jacob’s mum
  • EACH helped us with coping mechanisms and special ways of remembering Stanley. Brad, Stanley's Dad
  • EACH supports families when they’re at their absolute lowest, helping them to come to terms with their child’s illness, losing them and beyond Brad, Stanley's Dad
  • I didn’t realise hope was a gift until I became a mum. My little boy taught me many things and that was one of them Claire, Jacob’s mum
  • Children like Lucy don’t get the opportunity to go to sleepovers or to their friends for tea, so the interaction she has at the hospice is priceless. Heather, Lucy’s mum

The Treehouse

St. Augustine’s Gardens,
Ipswich, IP3 8NS

Milton

Church Lane, Milton,
Cambridge, CB24 6AB

Quidenham

Quidenham , Norwich,
Norfolk, NR16 2PH