Local Learning and Evaluation Report

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

Training aimed at complex needs

Source: Nursing Standard 2011, vol.25(35), p62-3

Follow this link for the full text article

Date: May 2011

Publication type: Article

Publication length: 2 pages

In a nutshell: This article describes the work of the charity Demelza in providing family-orientated hospice care for children with life-limiting illnesses and their families in Kent, East Sussex and south east London. The work of nurses in the community palliative teams who provide care for children at home is also highlighted.

Some important notes: An NHS Athens password is required to access this article online. Follow this link to register for an Athens password.

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

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

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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

Happier Endings

Source: Nursing Standard, 2010, 25(5) p24-5

Follow this link for the fulltext article

Date of Publication: October 2010

Publication Type: Article

In a nutshell: The nurse-led Ty Hafan children’s hospice in Wales has pioneered an approach to end of life care adopted by other NHS bodies in Wales. Development of a pack of guidelines to help each family and child tailor their care, provision of a hydrotherapy pool, a multi-sensory room, pet therapy and specific activities for teenagers are described.

Length of Publication: 2 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

Paediatric palliative home care by general paediatricians: a multimethod study

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 

ACT calls for more Community Children’s Nursing to boost care for terminally ill children

Title: ACT calls for more Community Children’s Nursing to boost care for terminally ill children

Source: ACT

Follow this link for web article

Date of Publication: March 2010

Publication Type: Web Article

In a nutshell: ACT has welcomed the launch of Front Line Care, the report by the Prime Minister’s Commission on the Future of Nursing and Midwifery in England. One of the report’s key recommendations is a commitment to improve the care of all people with long-term health conditions, including children and young people, and the recognition of the leading role nurses play in delivering this.

Acknowledgements: The Prime Minister’s Commission on The Future of Midwifery and Nursing in England

ACT welcomes key working plans for families with disabled children

Title: ACT welcomes key working plans for families with disabled children

Source: ACT

Follow this link for the news article

Date of publication: January 2010

Publication Type: News article

In a nutshell: ACT has welcomed the proposed new measures to support families with disabled children contained in the Government’s ‘Support for All – the Families and Relationships Green Paper’ published 20 January 2010. ACT Chief Executive, Lizzie Chambers said: “It is great to see the Government’s commitment to developing new ways of supporting families with disabled children. Nearly 24,000 children have a life-limiting condition which means they will not reach adulthood, and the families and carers who support them tell us that one of the greatest obstacles to receiving help is trying to communicate with the huge range of professionals who are involved in delivering care to their children. They need a named key worker to help them navigate; as well as advocate on their behalf.”

Some important notes: Follow this link to download a copy of the Support for all – the families and relationships green paper

Acknowledgements: Every Child Matters

Statement by the Welsh Assembly – Palliative Care

Source: Health of Wales Information Service

Follow this link for the article

Date of Publication: October 2009

Publication Type: News Item

In a nutshell: Edwina Hart, Minister for Health and Social Services – Welsh Assembly, updated the Assembly Government with the latest developments in Palliative Care following a review led by Viv Sugar, Chair of the Welsh Consumer Council examining the core elements of a palliative care service for adults and children.

Acknowledgement: Health of Wales Information Service

Diversity topics tackled with new toolkit for children’s hospice services

Source: Children’s Hospices UK

Follow this link for webpage

Date of Publication: October 2009

Publication Type: Website

In a nutshell: A new toolkit was launched 12 October to help children’s hospice services address the challenges and barriers faced in delivering services to children, young people and families from diverse communities. The Children’s Hospices UK Diversity Toolkit aims to equip children’s hospices with the knowledge and expertise needed to provide for families from all cultures and backgrounds, no matter what their beliefs and customs.

Acknowledgement: Children’s Hospices UK

Quality Markers for children and young people’s palliative care services

Source: ACT

Link to web article

Link to Quality Markers report

Date of Publication: September 2009

Publication Type: Web article

In a nutshell: ACT has developed a series of Quality Markers which aim to support both providers and commissioners of services across the whole children’s palliative care sector as they strive to improve this quality of care. 

Document Length: 2 pages

Disabled children missing out on basic NHS care

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

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

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

Northwest Children and Young People’s Palliative Care Network

Title: Northwest Children and Young People’s Palliative Care Network

Author: ACT

Date: 8th May 2009

In a nutshell: The Northwest Regional Children and Young People’s Palliative Care Network is a managed clinical network which brings together Children and Young People’s Palliative Care Zonal Groups from Greater Manchester and Cumbria & Lancashire together with the Merseyside and Cheshire Children’s Palliative Care CNG, to represent the needs of children and young people across the entire Northwest region.

Click here for website

ACT launches new family companion

Title: ACT launches new family companion

Author: ACT

Date: 7th May 2009

In a nutshell: ACT has launched a new publication to help families and carers of children and young people with life-limiting and life-threatening conditions understand what will happen following their child’s diagnosis.

Click here for Family Companion summary

Click here to order resource