Helen & Douglas House Community Hub Open Day in Aylesbury

Helen & Douglas House children’s hospice is holding its first Community Hub Open Day pilot at the PACE centre in Aylesbury from 10am-3pm on Thursday 30th October, to canvas views on what future community hubs could look like in the Buckinghamshire area, and other communities in the future.

This initiative directly aligns with the NHS 10-year health plan published in the spring, for equitable, community-based care and Helen & Douglas House’s aims to extend their reach to more children, young people and families.

Although Helen & Douglas House already offers outreach nursing support in the homes of children living in Buckinghamshire, the aim is to improve accessibility of their other fundamental services, traditionally largely supported in house for families with children with life-shortening conditions, bringing them closer to where they live. By providing local Community Hubs local families may be able to receive more care and support from Helen & Douglas House in their local area. The charity wants to explore whether more services could be offered in set locations away from its hospice in Oxford.

Sally Hayes, Director of Nursing and Care at Helen & Douglas House said “Families with children with life-shortening conditions often face logistical and financial barriers when accessing services further from home. The Helen & Douglas House Community Hubs could reduce these challenges by offering support locally in accessible community venues in collaboration with NHS colleagues and local communities.

“Our goal is to ensure that the care we provide is accessible, equitable, and tailored to the needs of the children and their families. The Helen & Douglas House Community Hubs could provide localised outreach support including play therapy, physiotherapy, sibling support, bereavement care and holistic family support services for children with life-shortening conditions and their families. We know often families are frightened to enter a hospice this way they can still meet and benefit from the teams skills “

The service provided will aim to be tailored to the needs of the families using the services, ensuring a personalised and family-centred approach, recognising the often unique requirements of each child and young person.

Aiden Warner who has Cerebral Palsy is 8 years old and lives in Aylesbury. Aiden and his family have been receiving support at home from Helen & Douglas House since 2022 through an outreach nurse funded by the Pepper Foundation.

In 2022 Aidan was very ill and mum Zoe had another young son to take care of. Zoe had very little support and was lost in the emotional toil of repeating her story to doctors and always taking on the advocacy role in her son’s care.

But then the family were introduced to the Helen & Douglas House outreach nurses.

Zoe said “They wrapped their arms around my family and since then, our lives have been changed for the better. Despite our initial apprehension, we were gob smacked at the support that they provided. Any burden that they can take off from you they do which is amazing. I don't know where we'd be without that support now.”

The family have regular visits from the outreach nursing team and whether it’s a chat in their home, visits at the hospital or help with coming to terms with more changes in Aidan’s care, the support provided by the Helen & Douglas House team has proven to be a vital lifeline. Aidan’s condition changes a lot, and each new change brings with it uncertainty and anxiety as the family learns to adapt once again to another routine.

Zoe said “It's not talked about the journey that you have to go on. It feels like there's other people going on the journey that you're on. Sometimes all you need is just to feel like you're not doing this alone. Even just a mum with a child who doesn’t have complex needs, it takes a village. But when you have a child with complex medical needs, that village gets very small. With Helen & Douglas House, you have that village… it’s an absolute lifeline for us.”

Aiden’ story shows the benefits that the future Community Hubs could bring providing more services to local families closer to home.

If you have a child from 0-19 with a life-shortening condition and would like to find out more about the support Helen & Douglas House can give your family in Buckinghamshire, come along to the Community Hub Open Day on Thursday 30th October 10am – 3pm at PACE Centre, 156 Wendover Road, Aylesbury HP22 5TE. Free parking available. RSVP at hdh.org.uk/hdhcommunityhub (external website)