At the event, Lucy Watts, a young woman with Ehlers-Danlos Syndrome, spoke about her condition, the impact it has on her life, the care she receives and the needs of young people like her.
The even was hosted by MPs Stuard ANdrew and Sarah Champion, who both worked in the children’s palliative care sector before entering Parliament.
The priorities presented to the MPs and Peers were as follows:
We urge the main parties to adopt these priorities as they consider their manifestos and priorities for 2015 and beyond.
- Every child should have access to children’s palliative care in the setting of their or their family’s choice and whenever they need it – 24 hours a day, seven days a week
- Every child – and their family – should have access to palliative care services, including children’s hospices, which are sustainable and fairly funded.
- Every child – and their family – should get a short break if they need one
- Services should be more integrated around the needs of children and their families
- Every young person should have a smooth transition from children’s to adult’s palliative care services
- Services which provide palliative care to children – including children’s hospices – should be regulated fairly and proportionately
- Support to families of children who die with life-threatening or life-limiting conditions should be improved
- Families should receive help from the state to help mitigate the financial impact of caring for a child