Local Learning and Evaluation Report

August 23, 2011

Source: ACT

Follow this link for fulltext

Date of publication: August 2011

Publication type: Report

In a nutshell: This report summarises the key learning from the ACT and Children’s Hospices UK Local Square Table Programme which consisted of 37 local ‘Square Tables’ which took place in Spring 2011 across England. The main objective was to increase understanding of children’s palliative care.

Participants included life-limited and life-threatened young people, their families, health, education and social care professionals, providers from the voluntary and statutory sectors, commissioners and other participants including faith and business leaders. 

The report captures the discussions that took place and the emergent themes: Accessibility of services; Working in partnership; Workforce & local community engagement; Emerging issues; and Funding.

Length of publication: 16 pages

Acknowledgement: The King’s Fund Health Management and Policy Alert

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Transition to adult services for children and young people with palliative care needs: a systematic review

March 25, 2011

Source: Archives Disease in Childhood, 2011, 96(1) p.78-84

Follow this link for fulltext

Date of publication: January 2011

Publication type: Article

In a nutshell: This systematic review looks at the transition process from child to adult services for young people requiring palliative care. The impact of care provided is considered and this is accompanied by a discussion on what factors facilitate or act as a barrier to successful transition. The reviewers looked at 92 studies and their conclusions include:

  • There’s no evidence of transition services that address “palliative care” as an overall concept.
  • Transition programs that exist are mainly condition-specific.
  • No long-term outcome data exist to compare the effectiveness/cost effectiveness of the condition-specific or generic transition models.
  • Effective transition programs should be multidisciplinary, bespoke for the patient and navigated with the aid of a designated key worker.

Length of publication: 7 pages

Some important notes: This article is available in full text to all NHS Staff using Athens, for more information about accessing full text follow this link to find your local NHS Library.

Acknowledgement: BNI


Paediatric palliative home care by general paediatricians: a multimethod study

June 25, 2010

Source:  Biomed Central  2010, 9 (11)

Follow this link for fulltext.

Date of publication: June, 2010

Publication type: article

In a nutshell:  This article focused on palliative care for children and adolescents and examines current practice in Germany where  it is common for specialist paediatricians to be based in a primary care setting.  The study examines barriers and incentives as well as the professional self-image of paediatricians involved in palliative care provision.  Key recommendations are made in relation to education, communication skills, local networks and on-call support are made. 

Length of publication: 30 pages

Acknowledgement:  Omega 


Disabled children missing out on basic NHS care

June 22, 2009

Source: ACT

In a nutshell: Campaign group Every Disabled Child Matters today launches a new report, ‘Disabled Children and Health’, highlighting the failure of the NHS to meet even the basic needs of disabled children. At a reception in the House of Commons, an audience of MPs, Primary Care Trust (PCT) leaders and commissioners and disabled young people and their families will hear about the battle disabled children and their parents face accessing healthcare services. Phil Hope MP, the Minister with responsibility for disabled children’s health services, will respond on behalf of the government.

Document type: Website

Click here for the full article


ACT Training Grants Available

June 18, 2009

Source: ACT website

Click here to visit the ACT website

Publication type: Website 

 In a nutshell: National children’s palliative care charity, ACT has re-opened Children’s Palliative Care Training Grants programme to allow professionals, carers and family members looking after children with life-limiting and life-threatening conditions to access training opportunities.   The grant programme is funded by The True Colours Trust and aims to provide grants of up to £250 to individuals and agencies who would otherwise not be able to access specialised training in the field of children’s palliative care.  Applications may be submitted up to 28th August 2009.  For full details of the grants and how to apply click here.


New guide to support the development of children’s palliative care services

May 27, 2009

Title: New guide to support the development of children’s palliative care services

Author: ACT

Date: 30th April 2009

In a nutshell: A Guide to the Development of Children’s Palliative Care Services now in its third edition, has been described as an invaluable tool for professionals who are concerned with developing, providing or commissioning services for children who have life-limiting or life-threatening health conditions. A Guide to the Development of Children’s Palliative Care Services is packed with the latest information, evidence and resources to help all those concerned with developing services for children.

Click here for website


Think transition: developing the essential link between paediatric and adult care

April 25, 2009

Title: Think transition: developing the essential link between paediatric and adult care

Author: Royal College of Physicians, Edinburgh

Year of Publication: 2008

In a nutshell: This guidance was designed to raise awareness of the important issues facing young people as they move from paediatric to adult care. and to provide all concerned with practical support to improve their experiences. This guidance is aimed at clinicians of al disciplines and in all health care settings.

For fulltext click here:

For Executive Summary click here:

Acknowledgement: Palliatiave Care Matters: Medical News

Source: National Library of Guidelines Specialist Library, National Library for Health