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Tackling misconceptions: your questions answered

News and comment

Tackling misconceptions has always been an important part of Children’s Hospice Week. It’s our responsibility to ensure that families across the UK have a full picture of what children’s palliative care is, and how it works. That’s why, earlier in the year, we asked our Facebook and Twitter audiences whether they had any questions about children’s hospice care, and we put them to a team of experts. Here’s what they said:

Do the nurses cry?

Yes, sometimes nurses cry. We do feel sad and upset when a child dies or a family is going through a particularly challenging time in their journey. It would be unprofessional for nurses to sob uncontrollably, but if a family is crying or during a particularly sad event, nurses do sometimes show their emotions and compassion and shed some tears.

What support is available for siblings?

It varies across hospices. At ours, there is a dedicated sibling support workers who can work one to one with each sibling. They can provide support when on respite breaks and stepped-up support when a child’s sibling is dying. We have a dedicated sibling room and a multi-disciplinary team including youth workers, play specialists and teachers.

Do parents leave children with Hospice staff while they do other things?

We encourage families to do what they want to do; the split is about 50/50, some parents like to go off and have some time out whereas others want to stay with their children all day.

If my child dies in a hospice how long will I be allowed to stay with them afterwards?

Up to one week afterwards but this can vary between Hospices.

What would we do all day on a respite visit?

We start by asking you what you want to do, you’re welcome to use all the facilities including hydrotherapy pool, sensory room, and messy play areas. We also have a lounge where you can relax and enjoy some time together as a family.

What are your visiting hours?

Our hospice doesn’t have visiting hours, we want to be your home from home, family are welcome to visit.

What about infections? Do Hospices have the same cleaning rules as hospitals?

Yes they do. All hospices will have strict infection control policies and procedures that they need to follow and these will also be looked at by the Care Quality Commission (The independent regulator of all health and social care services in England) when they come to inspect the hospice.

Are Hospices NHS funded?

Some (but not all) hospices receive a small amount of funding from the NHS, however this is often only a small percentage (around 22% on average) of the total funding they receive. The rest of their funding is raised through charitable donations.

This week is Children’s Hospice Week, the only week in the year dedicated to raising awareness and funds for children’s hospice and palliative care services across the UK, and the seriously ill children and young people they support. These services are a lifeline for families when they’re facing the toughest of times, and they can’t continue their vital work without your support.

If you’d like to find out more about children’s hospices, or find your local service, you can chat to our friendly helpline team on 0808 8088 100.

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