Five policy areas affecting seriously ill children and their families in 2019

As the year draws to a close, we reflect on 12 months of Rainbow Trust’s policy and influencing work. From small steps forward to concrete changes, we’re proud to have used our voice to push for better emotional and practical support for families with a life threatened or terminally ill child. Here are our top five positive policy stories from 2019:

1. A spotlight on siblings of seriously ill children

As the year began, Rainbow Trust’s report, See Us, Hear Us, Notice Us, focused attention on the needs of siblings of seriously ill children. The report set out how sibling support can help children learn important coping mechanisms and find an outlet for their strong feelings. As a result, many parents, adult siblings and professionals signed an open letter to the Care Minister and the Children and Families’ Minister, delivered in person by three siblings supported by Rainbow Trust’s Central London team.

The letter called on the Ministers to ensure all children and young people with seriously ill brothers and sisters have access to high quality sibling support when they need it, before their education, mental health and wellbeing are more seriously affected. Several MPs tabled parliamentary questions to which ministers had to respond to, and in May a teenage sibling shared her personal story of growing up with a seriously ill brother to a packed reception in the House of Lords.

We are yet to see any policy change which would expand services for siblings, but together our activity brought a neglected topic to attention in Whitehall, and prompted the fullest response yet from Care Minister Caroline Dinenage. Rainbow Trust continues to press for sibling support to be valued and funded more highly.

2. The NHS increased funding for children’s palliative care

January saw NHS England publish its priorities for the next ten years, and across the year there were several announcements related to the funding of children’s palliative care. This has been good news for our friends in children’s hospices who provide clinical care, but Rainbow Trust currently receives no funding from NHS England or central government. It remains to be seen whether any of these funding streams will help provide emotional and practical support for families. However, the increased attention on children’s palliative care shown by Care Minister Caroline Dinenage is welcome, and Rainbow Trust will build on this in 2020.

3. Cross party MPs kept up the pressure for improved care and support

While Brexit dominated the headlines, the committed work of MPs across the political divides ensured two parliamentary debates focussed on the needs of seriously ill children, in January and in July. Both debates referenced the value of emotional and practical support for the whole family from Rainbow Trust, and were made possible by the dedicated work of MPs leading the All Party Parliamentary Group for Children Who Need Palliative Care (an interest group for MPs). The debates built on the group’s in-depth report into whether families have a genuine choice about the care that they and their child can access at end of life, and helped keep up pressure on the government and NHS England to improve care and support.

4. The Children’s Funeral Fund became a reality

Back in spring 2018 Prime Minister Theresa May announced that funerals would be made free for children under 18, reducing financial hardship, and potential debt, for parents at the most difficult of times. But many months of silence followed, with hundreds of parents continuing to struggle with the cost of their child’s funeral, including families supported by Rainbow Trust. We added our voice to calls for the Children’s Funeral Fund to be made a reality as quickly as possible, and this finally happened in July 2019 when it became operational - an important step forward for bereaved parents.

5. Free hospital parking promised for parents of sick children staying overnight

Following the General Election, Boris Johnson’s plans for the new Parliament were set out in December’s Queen’s Speech. This included making hospital parking free for parents of sick children staying overnight from April 2020. Families supported by Rainbow Trust have long told us that the cost of parking can be a significant source of financial pressure when their child is seriously ill, with costs and discounts varying widely between different hospitals, and spending sometimes running into hundreds of pounds. It is not yet clear how this pledge will be implemented across England’s 206 different hospital trusts. Rainbow Trust will be pressing for this policy to benefit as many families of seriously ill children as possible.

2020 promises to be another busy year for policy and influencing. Rainbow Trust will be highlighting how a child’s serious illness affects parents’ mental health, and we will keep pressing ministers for more equitable funding for emotional and practical support which can enable families to cope better with their situation. You can keep up to date by signing up to our e-newsletter.