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Annual Review 2008 - 09

Who we are and what we do

Highlights 2008/09

Children’s Hospices UK is the national charity that gives voice and support to all children’s hospice services.

• Published guidance and assessment tools to help develop the care support children’s hospices provide to children, young people and their families

Our work includes: • Care development, helping to shape the delivery of children’s hospice care support to children, young people and families • Campaigning and lobbying on behalf of children’s hospices, ensuring their voice is heard by governments • Awareness raising, making sure that people know about the wide range of support children’s hospices provide

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• Raising additional funds to support their work with children and families


• Campaigned alongside partner charities leading to the government allocating £30 million for children’s palliative care • Delivered a successful two day multi-disciplinary national conference with innovative key note speakers and workshops • Raised over £800,000 for children’s hospice services through national fundraising partnerships and events • Generated over 450 media cuttings profiling the work of children’s hospice services, equating to nearly £500,000 of advertising spend

Message from our Chair

In 2008 the Association of Children’s Hospices became Children’s Hospices UK. This change of name, coupled with the introduction of a fresh and dynamic new identity, symbolised the start of a new era for the work we do on behalf of children’s hospices across the UK. It is a sad fact that children’s hospices, which cost on average £2.5 million to run each year, have to raise at least 80% of their funds from voluntary donations. This year we successfully worked with policy makers and partner organisations to help improve this, ensuring that the needs of life-limited children and their families continue to be a priority on the government’s agenda in England. We also strengthened our national fundraising scheme in an effort to raise more money towards the running costs of all children’s hospice services. Our vision is for a future where every child and young person has the opportunity to access quality children’s hospice care in the location of their choosing. If we are to get closer to achieving this, particularly within a challenging economic climate, we need to ensure the sustainability of all children’s hospices. Our voice on behalf of this sector needs to be stronger than ever at a national level, ensuring that the everyone is aware of the unique role of children’s hospices and their need for ongoing financial support from both their community and the government. Similarly, the need has never been more pressing for us to provide support to our members to help them develop effective partnerships with Primary Care Trusts, Local Authorities and other providers of children’s palliative care to ensure a joined up approach to sustainable service delivery. At this critical time in the development of the children’s hospice sector, the arrival of our first Director of Care Development is most timely and will enable us to do even more to ensure that children’s hospices are at the leading edge in the delivery of services to life limited children young people and their families. .

David King, Chair


The best possible care

In February 2009 our first Director of Care Development came into post. The appointment will enable us to achieve our ambition to strengthen the support we provide to our members in their delivery of care to children and families. In the meantime, over the last year we made progress in this area of our work as follows: • We re-launched ‘Are we getting it right?’, an essential tool used by 90% of children’s hospice services to evaluate the quality of the care they provide to children and families • We developed a framework for enabling more research to be undertaken across the children’s hospice sector in the UK in recognition of the need for a stronger evidence base for the invaluable work of children’s hospices • We commissioned the development of a toolkit for our members to support them in the way that they work with children and families from Black and Minority Ethnic groups as well as other minority groups • In partnership with ACT (the Association of Children’s Palliative Care), we developed a guidance document for children’s hospices and other children’s palliative care providers to address ways of ensuring an effective children’s hospice and palliative care workforce.


”Children’s Hospices UK is the national charity that gives voice and support to all children’s hospice services.”


Campaigning and lobbying

Working to ensure that the voice of children’s hospice services is heard by policy makers We successfully campaigned to ensure that Primary Care Trusts (PCTs) in England have money available to spend on children’s palliative care. Our lobbying with partners led to the government announcing an allocation of £30 million over three years for PCTs. We launched a guide to help children’s hospice services develop successful partnerships with health and social services commissioners. Making the Case for Children’s Palliative Care: A guide to winning funding from service commissioners in England was a joint publication with our partner organisation, ACT. We continued to work in partnership with the government to ensure implementation of national policy guidance including Better Care: Better Lives, the strategy for children’s palliative care in England which we played a key role in developing.


” Ecum acerio tetur re nisquatus vernam in nonsenit voluptam.”

Training, events and the sharing of best practice

Enabling the sharing of information and knowledge between children’s hospices In November 2008 we delivered our first national two day multi disciplinary conference for children’s hospice staff. Chaired by the broadcaster Martyn Lewis OBE, the conference was attended by over 200 delegates and included presentations and workshops from visionary experts in the fields of children’s palliative care, fundraising, leadership and management. Throughout the year we organised over 50 workshops, special interest groups and forums for our member children’s hospices enabling networking and the sharing of best practice across care, fundraising, volunteering, and finance and management teams. In June 2008 we launched our new extranet, an online tool to enable children’s hospices to share information and keep up to date with the latest developments in our work and the wider children’s palliative care arena.


Raising awareness

Fundraising for children’s hospices

Helping to keep the work of children’s hospices in the public eye

Raising money for children’s hospice services through our national fundraising scheme

Our communications team generated 450 media cuttings in 2008 – 9, profiling the work of children’s hospices. This coverage is worth nearly £500,000 of advertising.

Our corporate fundraising department works with companies and organises national events to raise money for children’s hospices across the UK. In April 2008 we strengthened the team to enable us to raise more funds through charity of the year partnerships and themed national events such as Santas on the Run.

In June we redesigned and re-launched our web site to make it more accessible and easier to navigate. We now average 4,500 hits per month, a year on year increase of 41%.

This year we raised £811,000 for children’s hospices. Our corporate partners included BMW, Candis Club, Dunhelm Mill, Foresters, Fortnum & Mason, Team England, Phoenix Trading and Woolworths. Through our partnership with Team England we were able to help make dreams come true by hosting visits to children’s hospices by England football team players including David Beckham, Michael Owen and David James.


“I love the new look Children’s Hospices UK – it’s bright, modern and feels happy.” Michael Owen, England Football Team


Accounts for the year 2008/09




21% 66%


Income (£’000s): 1,805

Expenditure (£’000s): 1,736

1,191k (66%)

from fundraising donations

1,306 (75%)

on charitable activities

379 (21%)

from other sources

395 (23%)

235 (13%)

from grants and trusts

on income generation (this represents the cost of raising funds to support core activities)

35 (2%)

on governance

”We distributed £735,000 to children’s hospice services throughout the UK in 2008 – 09. This represents an increase of 23% from last year.” 00

Our member children’s hospice services across the UK

9 10

39 22 6


32 5 40

13 27

1 Acorns Children’s Hospice - Acorns in Birmingham 2 Acorns Children’s Hospice - Acorns in the Black Country 3 Acorns Children’s Hospice - Acorns for the Three Counties 4 Bluebell Wood Children’s Hospice 5 Brian House Children’s Hospice 6 Butterwick House Children’s Hospice

16 Demelza South East London 1 7 7 Derian House Children’s Hospice 18 The Donna Louise Children’s Hospice 19 East Anglia’s Children’s Hospices (EACH) - Ipswich

34 Northern Ireland Children’s Hospice

20 East Anglia’s Children’s Hospices (EACH) - Milton

35 Rainbows hospice for children and young people

21 East Anglia’s Children’s Hospices (EACH) Quidenham

36 Richard House Children’s Hospice

23 EllenorLions Children & Young People’s Service

9 Children’s Hospice Association Scotland (CHAS)

24 Francis House Children’s Hospice

40 Ty Gobaith

25 Haven House Children’s Hospice

41 Ty Hafan - the family hospice for young lives

12 Children’s Hospice South West


1 20

3 26 41

11 43




8 29

38 St Andrew’s Children’s Hospice 39 St Oswald’s Hospice, Children’s Service

New 42 Noah’s Ark Children’s Hospice

27 Hope House 43 The Jessie May Trust

13 Claire House Children’s Hospice

28 Iain Rennie Hospice at Home

44 The West Yorkshire Forget me Not Trust

29 Julia’s House 14 Demelza Community


25 42 31 37 36 16 23 15 7

37 The Shooting Star Children’s Hospice

8 Chestnut Tree House Children’s Hospice

26 Helen & Douglas House - hospice care for children and young adults


4 35


22 Eden House Children’s Hospice

11 Children’s Hospice South West



32 Martin House - a hospice for children and young people 33 Naomi House Children’s Hospice



31 Little Havens Children’s Hospice

7 CHASE hospice care for children

10 Children’s Hospice Association Scotland (CHAS)


30 Keech Cottage Children’s Hospice

15 Demelza Kent



”Ecum acerio tetur re nisquatus vernam in nonsenit voluptam.”

Openwork is proud to support Children’s Hospices UK through its Community Involvement Programme

Children’s Hospices UK First Floor, Canningford House 38 Victoria Street, Bristol BS1 6BY Tel: 0117 989 7820 Fax: 0117 929 1999

Children’s Hospices UK is the working name of the Association of Children’s Hospices which is a registered charity in England (1103795) and is incorporated as a company limited by guarantee (4840209 - England)


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