Disabled children and their families are missing out on vital care and support as a result of government cuts, says the new boss at Bluebell Wood on the eve of National Children’s Hospice Week (17 to 23 June).

Simon Hills, who joins the North Anston hospice from a 20-year career in charity management, is pledging the hospice’s support for the “Give it Back” campaign launched by the Disabled Children’s Partnership, a coalition of over 60 organisations campaigning for improved health and social care for disabled children, young people and their families in England.

“The government should fill the £434 million gap in social care funding for disabled children in England through the upcoming Spending Review. The lack of funding is hurting children and families,” said Simon, 48.

“Every day, Bluebell Wood ensures shorter lives are filled with as many special memories as possible. But we also have to fight for the rights of our families outside of our hospice,” he continued.

“Recent research carried out during April 2019 of more than 3,400 parents with disabled children sets out the impact that a lack of services has on their lives.

“Only 4% of parent carers said they felt they were getting the right support to safely care for their disabled children. Some 15% of those surveyed had children with a life-shortening or life-threatening condition.

“These families should not have to struggle to get the help and support they desperately need, which is why we support this campaign to encourage the government to ‘give it back’.”   

In its 11 years, Bluebell Wood has been a haven for hundreds of children and young people with life-threatening and life-shortening conditions. Last year it received 53 new referrals, supported 239 families and counselled 65 bereaved families and, having listened to the wishes of families, grew its community-focused team.

Children’s Hospice Week raises awareness and funds for children’s hospice services across the UK. The theme for this year’s campaign, Moments That Matter, focuses on the treasured moments families have been able to share, thanks to the support of hospice workers.

Simon steps into the CEO role vacated by Claire Rintoul in November. He comes to the hospice from interim CEO roles at Relate Derbyshire, Safe and Sound, a charity tackling child sexual abuse and exploitation across Derbyshire, and the cancer charity Lymphoma Action.

BLUEBELL WOOD CHILDREN’S HOSPICE STATS FOR 2018-19:

Hospice care:

The hospice received 53 new referrals

239 families have been given ongoing support

65 bereaved families have been supported with counselling

The hospice end of life suites were used on 93 nights