Catherine McKinnell MP has renewed her commitment to the charity Together for Short Lives’ campaign for better support for children and young people who need palliative care and their families, at a recent event in Parliament.
The charity, which speaks out for the 49,000 children and young people in the UK who are expected to have short lives, held the event to highlight the devastating impact that life-limiting and life-threatening conditions can have on children and their families. MPs heard about the action that Together for Short Lives would like the Chancellor of the Exchequer to take to help these vulnerable families when he delivers his Budget on 8th March.
During the event, Catherine also heard from Rachel Thompson, the mother of nine year old Frank who was diagnosed with a rare life-limiting condition when he was just four. Rachel told Parliamentarians about the pressures of co-ordinating Frank’s 24/7 care and the support she and her family receive from their local children’s palliative care services.
The reception also saw the launch of the new All-Party Parliamentary Group for Children Who Need Palliative Care, to which Catherine McKinnell was elected as a Vice Chair. This group will provide an important forum for MPs and Peers to hear about the issues facing these seriously ill children – and what action they can take in Parliament to help.
Children with life-limiting conditions require a wide range of professionals working together across different health and care services to support them. Unfortunately, Together for Short Lives’ commissioning maps show that there is a postcode lottery of support for children and their families as many cannot access the care that they need. This is because it is not available in their area or there are not enough professionals with the right skills and experience to care for them.
Following the event, Catherine said:
‘I really appreciated having the opportunity to hear Frank’s story, and to learn about the wonderful support he receives from a range of services, including his local children’s hospice.
‘We are also fortunate in Newcastle to have some excellent palliative care for children, being provided by charities like St Oswald’s Hospice and at the Great North Children’s Hospital. But it was evident at this event that there is much more the Government could do to help families overcome the serious challenges they face on a daily basis.
‘This includes making the mobility component of Disability Living Allowance available to children under three who are dependent on often really heavy and bulky life support equipment. At the moment, this is only available to children aged over three.
‘Ministers must also ensure that the Children’s Hospice Grant is increased in value, in recognition of the increasing demand for children’s palliative care services and the increasing complexity of care required.’
Catherine’s involvement with Together for Short Lives builds on her work with Marie Curie locally, and the debate she led in Parliament towards the end of last year on support for adults with terminal illness.