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Gareth’s blog: Hospices are more than you think

In his latest blog, our CEO looks forward to Hospice Care Week.

Gareth’s blog: Hospices are more than you think

This Hospice Care Week (6–12 October), we’re shining a light on what hospice care really means, and why children’s hospices like Forget Me Not are essential, now more than ever.

Myth-busting: it’s not just end of life

There’s a common misconception that children’s hospices are only about end-of-life care. 

In reality, they’re about helping children and families live as fully as possible. From pregnancy through to bereavement, we provide a wide range of vital services; short breaks, symptom management, creative therapies, sibling support, and more.

We’re not just a place to go when things get tough and families have nowhere else to turn. From a splash about in our hydropool, a bounce around in our soft playroom, movie night in our cinema to our peer support groups, days out and new activity days, families find a place for support, understanding, and the space to make the most of every moment – together.

Living well: what it looks like

A key focus for us is to empower families to live well – going beyond the day-to-day challenges of caring for a child with a life-shortening condition and helping them address some of the other, often extremely complex, issues that might be impacting their ability to live life to the full. For one family, for instance, this has involved signposting them to organisations that can help tackle housing issues that make it difficult for them to live together. Our link workers do this by working with each of our families to identify what will make the biggest difference to them, then supporting them to create bespoke plans to address the individual issues they face either through direct support from Forget Me Not or by signposting to other charities and organisations.

Living well can mean something very different to every single family we support. That’s why we’re taking a truly tailored, holistic approach. 

Living well can mean something very different to every single family we support. That’s why we’re taking a truly tailored, holistic approach.

Gareth Pierce, CEO

A children’s hospice that’s fit for the future

Our new strategy is focused on strengthening our foundations, delivering exemplary care, ensuring financial sustainability, and future-proofing our infrastructure – so we can continue meeting the evolving needs of children with life-shortening conditions, their families and families living with the loss of their child.

Funding equality: a growing crisis

Children’s hospices are facing unprecedented financial pressure. Costs have risen by 34% in just three years, and 89% of children’s hospices in England expect to run a deficit this year. Despite this, ring-fenced NHS funding is at risk of ending after 2025/26. 

We’re calling on the government to increase this funding from £26 million to £30 million by 2030 and to hold Integrated Care Boards accountable for fair and consistent funding. The current postcode lottery, where one ICB spends £434 per child and another just £23 is simply unacceptable. Something needs to change.

See it for yourself: come to our open days

If you want to understand what children’s hospice care really looks like and equip yourself with the facts to advocate for it – come and see for yourself!

We’re opening our doors at Russell House on:

• Thursday 9th October – for schools, businesses and groups (tours by appointment, with refreshments, a pop-up shop and info stands).

• Saturday 11th October – open to the public from 10am–2pm, no booking required.

Children’s hospice care is more than you think. It’s about helping children and families to live well – today, tomorrow, and into the future.

Gareth Pierce, CEO

How you can help

This week, could you?

  • Challenge the myths: share what children’s hospices really do.
  • Champion living well: talk about how hospice care helps children and families to thrive.
  • Think about visiting Russell House: come and see for yourself the vital care and support that we provide to children and families. 

Children’s hospice care is more than you think. It’s about helping children and families to live well – today, tomorrow, and into the future.