Today (Tuesday 29 January), MPs will participate in a crucial debate on support for children with life-limiting and life-threatening conditions across England.

Why is this happening?

Late last year the All-Party Parliamentary Group (APPG) for Children Who Need Palliative Care published a report on the extent to which the government’s end of life care commitment is being met for babies, children and young people who live with life-limiting and life-threatening conditions.

The government’s ‘Our Commitment to You for End of Life Care’ sets out what ministers expect commissioners to attain for babies, children and young people with life-limiting and life-threatening conditions, including:

• Respite care, delivered in a children’s hospice setting, by community palliative care services, or ‘hospice at home’ services.
• Good collaboration between different clinical and non-clinical services across a variety of different settings.
• Support around bereavement, both before and after a child dies.
• Prioritisation of children’s palliative care in commissioners’ strategic planning so that services can work together seamlessly and advance care planning can be shared and acted upon.

(Together for Short Lives, 2019)

The APPG is a ‘cross-party group of MPs and peers which seeks to educate, inform and motivate other parliamentarians to take action to transform the lives of children and young people across the UK with life-limiting and life-threatening conditions’ (Together for Short Lives, 2019), and the secretariat is the Living Life to the Fullest Project’s critical friend, Together for Short Lives.

What is the problem?

The inquiry behind the APPG’s report concluded that, despite the government’s commitment, children and families’ access to quality palliative care is erratic and depends largely on where they live in England. This is unjust and equates to a serious health inequality for disabled babies, children and young people with LL/LTIs and their families.

Through narrative and arts-informed methods, the Living Life to the Fullest project – based at the University of Sheffield – is hearing the stories of disabled children and young people and their families across the UK. Many of these stories – particularly those of parents – have reported that critical forms of care and support are being denied to their children, making life harder for families. Other parents have told of a serious lack of bereavement support after their child has died.

What will happen next?

Importantly, the APPG has demarcated a series of clear recommendations for government ministers and officials, working with partners, in order to make attempts to overcome the barriers that are endangering the end of life care commitment.

According to Together for Short Lives (2019), ‘this debate, secured by Jim Shannon MP, Vice-Chair of the APPG, is a crucial opportunity for MPs to call upon the minister to take these actions and set out what steps the government is taking to respond to the APPG’s recommendations’.

We will update you on the outcomes of today’s debate next week. You can access and download the APPG’s inquiry report here.