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

Our work includes:

• Caredevelopment,helpingtoshapethedelivery of children’s hospice care support to children, young people and families

• Campaigningandlobbyingonbehalfofchildren’s hospices, ensuring their voice is heard by governments

• Awarenessraising,makingsurethatpeopleknowabout the wide range of support children’s hospices provide

• Raisingadditionalfundstosupporttheirworkwith children and families

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

• Campaignedalongsidepartnercharitiesleading to the government allocating £30 million for children’s palliative care

• Deliveredasuccessfultwodaymulti-disciplinarynational conference with innovative key note speakers and workshops

• Raised over £800,000 for children’s hospice services through national fundraising partnerships and events

• Generatedover450 media cuttings profiling the work of children’s hospice services, equating to nearly £500,000 of advertising spend

Who we are and what we do

Highlights 2008/09

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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,thearrivalofourfirstDirectorofCareDevelopmentismost 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

Message from our Chair

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InFebruary2009ourfirstDirectorofCareDevelopmentcame 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:

• Were-launched‘Arewegettingitright?’,anessential tool used by 90% of children’s hospice services to evaluate the quality of the care they provide to children and families

• Wedevelopedaframeworkforenablingmoreresearch 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

• Wecommissionedthedevelopmentofatoolkitfor 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

• InpartnershipwithACT(theAssociationofChildren’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.

The best possible care

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

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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.

Campaigning and lobbying

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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.

Training, events and the sharing of best practice

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

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

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.

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%.

Raisingmoneyforchildren’shospiceservicesthrough our national fundraising scheme

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 nationaleventssuchasSantasontheRun.

This year we raised £811,000 for children’s hospices. Our corporate partners included BMW, Candis Club,DunhelmMill,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 EnglandfootballteamplayersincludingDavidBeckham,MichaelOwenandDavidJames.

Raising awareness

Fundraising for children’s hospices

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

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Accounts forthe year 2008/09

Income (£’000s): 1,805

1,191k (66%) from fundraising donations

379 (21%) from other sources

235 (13%) from grants and trusts

Expenditure (£’000s): 1,736

1,306 (75%) on charitable activities

395 (23%) on income generation (this represents the cost of raising funds to support core activities)

35 (2%) on governance

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

75%

23%

2%

21%

13%

66%

Our member children’s hospice services across the UK

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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

7 CHASE hospice care for children

8 Chestnut Tree House Children’s Hospice

9 Children’s Hospice Association Scotland (CHAS)

10 Children’s Hospice Association Scotland (CHAS)

11 Children’s Hospice South West

12 Children’s Hospice South West

13 Claire House Children’s Hospice

14 DemelzaCommunity

15 DemelzaKent

16 DemelzaSouth East London

177 DerianHouse Children’s Hospice

18 TheDonnaLouiseChildren’s Hospice

19 East Anglia’s Children’s Hospices (EACH) - Ipswich

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

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

22 Eden House Children’s Hospice

23 EllenorLions Children&YoungPeople’s Service

24 Francis House Children’s Hospice

25 Haven House Children’s Hospice

26 Helen&DouglasHouse - hospice care for children and young adults

27 Hope House

28 IainRennieHospice at Home

29 Julia’s House

30 Keech Cottage Children’s Hospice

31 Little Havens Children’s Hospice

32 Martin House - a hospice for children and young people

33 Naomi House Children’s Hospice

34 Northern Ireland Children’s Hospice

35 Rainbowshospice for children and young people

36 RichardHouse Children’s Hospice

37 The Shooting Star Children’s Hospice

38 St Andrew’s Children’s Hospice

39 St Oswald’s Hospice, Children’s Service

40 TyGobaith

41 Ty Hafan - the family hospice for young lives

New

42 Noah’s Ark Children’s Hospice

43 The Jessie May Trust

44 The West Yorkshire Forget me Not Trust

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

Children’s Hospices UK First Floor, Canningford House 38 Victoria Street, Bristol BS1 6BY www.childhospice.org.uk info@childhospice.org.uk

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)

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