Date published: 22 January 2016 by Anna Jackson

Rainbow Trust Children’s Charity is the leading organisation providing children’s social palliative care in England. But mention palliative care for children and all too often people think of hospices or hospitals as the only option. This year we want to change this perception and let people know of the other options available to them, including that of Rainbow Trust, which provides support by the way of Family Support Workers who work directly with families outside of the traditional hospice or hospital setting.

Children’s hospices across England rightly deserve their worldwide reputation as being at the forefront of best practice in child palliative care. Hospices can provide state of the art facilities which give both children and their families a much needed place to go when they need a break, or additional nursing/medical support and families feel hugely grateful for the high quality of care that is offered. Their role will continue to be crucial in the years ahead as the number of children with terminal and life threatening illnesses continues to grow, with medical technology enabling more children to live longer than ever before with their diagnoses or conditions.

Why do we need more recognition for all year round support of children and families?

But hospices are only one part of the picture. What about the needs of children and their families day to day, seven days a week, 52 weeks a year? What about the support that is needed when they leave the hospital or hospice?

This year, as we celebrate our 30th Anniversary, Rainbow Trust wants to see far more recognition for the complementary role of social palliative care, which combines both emotional and practical support tailored to families’ needs. This support should be available and delivered wherever the family may need it, whether that be in the community, at hospital, or at home.

For the nearly 2,000 families that we support across England, this means having access to a Rainbow Trust Family Support Worker who will do whatever is needed to help a family cope. This support may be:

• taking a sibling to school while the parents are in hospital with their sick child
• playing with the sick child while a mum or dad has a much needed break
• picking a family up at 6am to drive many miles to a hospital appointment far from home.

Family Support Worker help can add up to 1001 small things and is bespoke for every family they support.

The government should consider funding care outside a ‘traditional hospice setting

Until a child becomes ill, the question of who pays for social care for a family whose child has a diagnosis of a terminal or life-threatening illness is probably not one that you would consider. Many people might well assume there is some state provision in such circumstances. Calls for free social care for older people at the end of life are receiving more and more attention as the time bomb of an ageing population and cuts to local authority budgets point to a serious crisis in adult social care in the years ahead.

Indeed, last year’s House of Commons Health Committee report of its inquiry into palliative and end of life care in England included a recommendation for free social care at the end of life, and many experts are calling for social care to be put on a more sustainable footing alongside the NHS. But the voice of children has yet to be heard in this debate.

Despite the strong emphasis on personal choice in government policies on health and social care, Rainbow Trust receives just three per cent of its income from statutory sources. We urge policy-makers to recognise that cost-effective social palliative care for children and families can be provided in the community ‘outside of a traditional hospice setting’. We would also urge the Department of Health to start to look outside the traditional settings for care and consider funding care in a social care setting. Currently it does not.

Cost effective - vital support that complements hospice services

For an average direct costs of just under £1,650 each year per family, Rainbow Trust provides a service which saves the NHS, local authorities and wider society far more than our services cost because our support can help families to avoid reaching a breaking point. For instance, we can:

• maintain some normality for siblings whose emotional wellbeing and educational attainment might otherwise suffer or
• make sure parents can access practical and emotional support over many months or years at a highly stressful time in their lives, when one parent is often still holding down a job.

We offer a vital service which complements that of hospices, and enables families to access tailored care and support wherever they wish to receive it. A first step for government would be to ensure that sustainable long-term funding is available on an equal basis to organisations like Rainbow Trust who are currently outside the scope of ‘hospice funding’ streams.

We are all too aware that there are many more families who could benefit from our services whom we do not yet support. It is high time for existing public funding to be made available to organisations like ours so that more families can have a genuine choice about the place and type of care they receive. Please join us this year as we seek to change this.

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