The fear of hospice care is hampering support opportunities for parents and children, our Chief Executive Mike Palfreman has said following the launch of our new strategy.

Mr Palfreman said it is still the case that many families fear that using a hospice is an acceptance that their child will not outlive them and so will miss out on the chance for vital support.

As part of a new five-year strategy entitled ‘Vision 2020 – The Best Possible Life’ we announced today our intention to widen our services with the aim of supporting 500 children each year across North and North East London, West Essex and East Hertfordshire by the end of the decade.

From 2014 to this year we supported 329 children, however research estimates that there are more than 2,000 children living with a life-limiting condition in our catchment area, many of whom would benefit from hospice care.

Mike Palfreman, Chief Executive of Haven House Children’s Hospice, said:

“We are providing care and support to more life-limited children and their families than ever before, but it is still the case that not enough families are accessing hospice care services in our local area.

“This may be due to a lack of awareness of the range of services that we offer, or because families are afraid that using a hospice is an acceptance that their child will not outlive them. Yet hospices are here to support children as well as parents, siblings and the wider family.

“Parents need to know a significant proportion of the care that we provide is respite; it is not predominantly about death and dying.

“Haven House families often tell us that accessing our services has made a substantial improvement to their lives and that is why expanding care is a key aim for Vison 2020.”

The strategy focuses on the holistic nature of palliative care and brings together four essential areas of activity.

These include: Maximising a multi-disciplinary care approach through the hospice’s Holistic Care Centre; Expanding clinical services at The White House to support more children; Developing family support services in the community and researching the need for and the impact of a Hospice at Home service.

'The nurses are lovely'

Sarah Craigie, who lives in Dagenham, first started using Haven House for her daughter, Georgia, who has progressive cerebellar atrophy, in 2011. Sarah said:

“When it was first suggested to me that Georgia came to a hospice I thought the worst. It was quite scary as it had only ever been me or my parents who had looked after her for 11 years.

"However, after her first overnight stay (where I burst into tears when I left) I have never looked back.

"The nurses are lovely and I know Georgia is in safe hands. When she was in hospital recently some of the Haven House nurses even came and sat with Georgia so I could take a short break.”

Sarah added: “I couldn't imagine life without Haven House now. I know Georgia loves the time she spends there and is benefiting from music therapy and physiotherapy. It also gives me that break to enable me to carry on giving her the best life possible, however long that may be for.”

Our Vision 2020 is available to download. If you would like it in an alternative format, or have any thoughts on how you can help us achieve our goals, please email vision@havenhouse.org.uk - we would love to hear from you.