Meeting the needs of our families: Family survey helping us to shape our future

Our family experience survey highlights the vital role that Haven House has in caring for seriously ill children, and how we must develop and adapt as families need us to.

Having a rest, improved physical and emotional wellbeing and a chance to create memories were what parents and carers said they value most about Haven House. They also said that the hospice made them feel ‘less isolated’.

Overwhelmingly families identified that they wanted more respite and longer breaks, indicating just how crucial families feel respite support is for their wellbeing and resilience.

A large proportion of parents of seriously ill children find it difficult to take a family holiday. By entrusting their children to Haven House, some parents told us that they were finally able to enjoy a holiday together.

Director of Care Eileen White said: “Listening to families is central to our work to ensure they can access the care they need, now and in the future. Our survey highlights the importance of all that we do, with carers asking for an increase in respite care as well as more activities and events that bring families together especially at weekends.

“We’re always striving to develop services to meet the individual needs of families by working in partnership with wider health and social care colleagues. Our goal is to increase our nursing staff to respond to the increasing demand for end of life support and respite care. Families told us how much they valued groups sessions and activities, so our teams are busy planning a variety of family-based events for the Spring/Summer months.

“Our sibling group is growing and thriving. They recently enjoyed a day out to the local drama centre and a stadium tour of Leyton Orient FC. We have a sports themed day planned for the next school holiday. We have already commenced a coffee morning on Saturdays, which we hope will offer families a supportive network.”

Families told us:

"Respite sessions during the year really help to support our family and ensure we spend quality time with the older sibling."

Being able to call upon Haven House for emotional support has been so helpful. The pandemic and dealing with our child's life-threatening illness has been very daunting and difficult at times."

"The mum and dad groups are absolutely vital and critically missed out by other services."

"Haven House is probably the only place I look to when I desperately need help and support to look after my child."

We are co-producing our Haven House Strategy 2022-2025, building on our good work and continuing to deliver the extraordinary in the ordinary day. The strategy sets out our key priorities:

• to continue providing specialist care and enabling choice where and when needed;
• broadening our reach and addressing inequalities of access and support;
• striving to meet unmet need; and
• collaborating and working in partnership to ensure that we strive for the best quality of life for every baby, child and young person who live in our local communities throughout their lives.