Sophie Dodgeon explains why the Rainbow Trust decided to work out how much its work saves the public sector. 

Now, more than ever, charities are being asked to prove their worth in society. Donors and stakeholders want to know exactly why the work of an organisation is so vital and what the impact would be if the charity didn’t exist. 

At Rainbow Trust Children’s Charity we decided to analyse what the impact would be on the health and social care system if we weren’t around to support families caring for a life threatened or terminally ill child. 

Rainbow Trust has nine teams of Family Support Workers who provide ‘social palliative care’ for families with seriously ill children. This is everything that families need alongside medical care to help them cope with the day to day stresses and strains of having a very seriously ill child.

It might be taking a sibling out to play in a park for a break from the situation at home, or it might be sitting with a sick child in hospital to give an exhausted parent a break. It might be practical support which enables a parent to stay in work at a time when family finances may be under strain. Rainbow Trust’s support is both emotional and practical, and families tell us that it makes a huge difference. 

Only 3 per cent of funding is from statutory sources

Yet these types of services are not well understood and often do not fit the criteria for statutory funding streams. Only 3 per cent of our funding came from statutory sources in 2015/16.

This is only enough to fund Rainbow Trust for 11 days in the year.

The rest we fundraise from voluntary donations. This is because our service fills in gaps and is tailored around a family, making it hard to fit the criteria applied to clinical funding streams or local authority short breaks.  

To make the case for fairer access to state funding, we have made conservative calculations of the money our support may be saving for public services in our new report, Hidden Savings, launched on 23 March. We looked at the type of support families seek from us, and made informed estimates of costs that public services might incur if we did not exist. 

We save the health and social care system £2m 

Central to the process was our examination of three illustrations of how Rainbow Trust supports families. These included a baby girl unable to leave hospital because of parents struggling to cope with the emotional and practical demands of their situation, and a five year old boy whose family missed important medical appointments.

It is these sorts of scenarios that our Family Support Workers often experience, and in each illustration the total money calculated as saved is a conservative estimate. This degree of support would not apply to every family that we support. However for some the figure will be the minimum level of support required, and the figure could be an underestimate.

Our conclusion is that our existence saves the health and social care system at least £2m every year.

This conservative sum doesn’t touch on many of our services because there is little like for like – home visits, helping siblings get to school and support in the home. The report also highlighted that not only do we save the public sector millions but we are good value too.

Our bespoke care costs just £22.64 an hour.

We want fairer access to state funding

Clearly, our report won’t open funding streams to us over night but it might open significant eyes to our work and the need for fairer access to state funding.

There are thousands of families where a child has been diagnosed with a terminal illness whom we cannot reach at present, because of funding constraints. This number will grow in the future as more seriously ill babies survive birth and more children with complex conditions live longer as a result of medical advances.

With the health and social care system under significant financial pressure, our report sets out a strong rationale for policy makers to create a fairer funding system - a system in which the savings that we make are no longer hidden. 

The full Hidden Savings Report is here.

Sophie Dodgeon is policy and campaigns manager at Rainbow Trust Children’s Charity