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Rachel Black: Turning up the volume on children’s palliative care

This week is Children’s Hospice Week. Noah's Ark Children's Hospice director of care Rachel Black explains how the Together for Short Lives charity, along with local services across the country, are aiming to raise awareness of the needs of seriously ill children and the services they and their families rely on.

This week is Children’s Hospice Week. Noah's Ark Children's Hospice director of care Rachel Black explains how the Together for Short Lives charity, along with local services across the country, are aiming to raise awareness of the needs of seriously ill children and the services they and their families rely on.

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Children deserve the best possible life, however long it lasts. 
Picture: iStock

It is vital that families caring for children with life-limiting conditions get the right care and support when and where they need it, and that services are developed to fit families’ needs. 

For Children’s Hospice Week the UK charity Together for Short Lives, along with services across the country, is turning up the volume on children’s palliative care. 

The campaign aims to amplify families' voices and change people's perceptions about some of the myths and misconceptions surrounding children's palliative care and children’s hospices, so families know what support is available.

I have had the privilege and responsibility of working as a children’s palliative care nurse for 13 years. The sector now has more robust evidence of the increasing numbers of children, young people and families who might benefit from hospice support. Armed with this knowledge, I am determined to find ways to give children, young people and families a voice so we know what they want and need, which will challenge those of us who are designing and delivering services to respond appropriately. 

Not good enough

It is simply not good enough to carry on as though nothing has changed. We know there is greater need, and we have to think of new and better ways of meeting this need. We must ask ourselves whether hospice models of care are fit for purpose. Can they adapt to meet more need and greater technological interventions? Should a range of approaches be planned and coordinated so that existing and new needs can be met? 

At Noah's Ark Children's Hospice I work with an incredible team of staff. At present, Noah's Ark is a community-based service, but we aim to complement our community work with residential services. These will provide drop-in facilities for all families, as well as overnight support for children and young people who are unstable, deteriorating or dying. We know we need to make our services reach more people, and our response to this is to be creative. 

Our model is already a bit different: we are a truly integrated health and social care team, and services are provided according to family-reported outcomes and holistic assessment of need. Nursing support is provided to those who need it, but we recognise that many children and young people have a lot of time when they are living well with a life-limiting condition. 

Hopes and dreams

Like all children, they have hopes and dreams, as do their siblings and parents. We want to enable them to achieve their hopes and aspirations, and to build resilience. 
 
To try to ensure we do what is helpful to families, we ask them to tell us their preferred outcomes of care and use this to tailor individual support. The most frequently cited outcomes are around improved social opportunities, and we have an amazing team of volunteers who enable us to deliver a range of activities for the whole family. 

These events allow individuals to develop a peer network and enjoy independence and new experiences, including ice skating, cookery workshops and horse riding. We take every opportunity to listen to children, young people, siblings and parents at these events, so we know what works and what doesn’t. 

Regrettably, all of the children and young people we support are likely to have an early death. While we spend a lot of time supporting memory-making with families during their child's life, we are determined to meet individual need at the most difficult time of death. 

Listening to families

Listening to the families’ preferences is fundamental, and ensuring they have greater choice regarding where and how they are supported is essential. Working in partnership with other nursing and medical teams enables 24/7 support. 

In professional circles we talk of ensuring 'a good death'. This can only be achieved if we know what that would look like for each individual family. This aspect of the work is challenging and difficult, but the sense of fulfilment is immense when you have listened to and integrated each individual's preferences.

I'm a children's nurse. I can't help the children and young people who I work with to get better, but I can do my utmost every day to give them every opportunity for the best possible life, however long that lasts. This is the best job in the world. 

Children’s Hospice Week is 22-28 May. Follow the campaign on Twitter using the hashtags #ChildrensHospiceWeek and #UpTheVolume


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Rachel Black is director of care at Noah's Ark Children's Hospice

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