Date published: 19 December 2019 by Jessica Homer

As seriously ill children and their families prepare to make the most of precious time together this Christmas, MPs new and old are taking up their seats in Westminster, and government ministers are returning to their desks. What can families of children with life threatening and terminal conditions expect from the new government?

With a large majority, the Conservative government has the power to implement its manifesto promises in full. These included:

• To make hospital parking free ‘for those in greatest need, including disabled people, frequent outpatient attenders, parents of sick children staying overnight’
• To ‘treat mental health with the same urgency as physical health’.
• To legislate to enable employed parents to take additional leave when a baby has required neonatal care
• To publish a National Strategy for Disabled People, to include looking at the benefits system, access to housing, education, transport and jobs, and support for children with Special Educational Needs and Disabilities.
• To help patients with multiple conditions to have ‘simplified and more joined-up access’ to the NHS.
• To develop new treatments, including extending the Cancer Drugs Fund into an Innovative Medicines Fund which could provide advanced treatments for conditions such as cancer or autoimmune disease, ‘or for children with other rare diseases’.

The manifesto also promised that the government would put its funded long term NHS plan into law, and grow the health workforce. Importantly the manifesto promised to re-instate a grant to support student nurses during their training, seen as essential for training more nurses as a time of significant staff shortages.

Rainbow Trust Chief Executive, Zillah Bingley, said:

“After an election campaign in which the needs of seriously ill children were barely mentioned, it’s vital that we and others in the children’s palliative care sector speak up loudly to influence the new government as it gets back to work.

Going into 2020, Rainbow Trust looks forward to supporting the work of the All Party Parliamentary Group for Children Who Need Palliative Care. The Group’s energetic cross-party activities in recent years have helped to win significant commitments from government. However, much more must be done if all families are to access the emotional and practical support that can enable the sick child, their siblings and their parents to cope better with an incredibly difficult situation.

We will also hold the government to account to implement its manifesto commitments. Rainbow Trust welcomes the promise to end hospital parking costs for families with sick children, and we will work hard to ensure the detail of this policy enables as many families as possible to benefit, removing a source of additional stress and anxiety when a child is an inpatient or receiving regular treatment. Furthermore, we hope that the commitment to improved mental health support will recognise the mental health needs of siblings and parents of children with a life threatening or terminal condition, which are often overlooked.”