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Young people with palliative care needs call on Government to do more

News and comment

Young people with palliative care needs from all over the country are travelling to London today (Wednesday) to take part in two days of events at which they will meet with ministers and health and social care professionals to tell them how the system is failing them just when time is most precious to them.

Today’s event is in the House of Lords, hosted by Marie Curie Cancer Care and national partners Together for Short Lives, Help the Hospices, and the National Council for Palliative Care. The young people will call on the Government to do more to ensure they get access to the right care and support.

The event will also see the launch of a report from Marie Curie which recommends that the Prime Minister personally leads a cross-government initiative to ensure that young people with palliative care needs and their families receive the care to which they are entitled.

Tomorrow (Thursday), at a major conference at the Oval Cricket Ground. Young people will come together to celebrate their achievements and meet with the Minister of State for Care Services, Paul Burstow. Mr Burstow will give a speech and then listen to readings given by some of the young people. He will also be answering questions with the aim of highlighting some of the issues which need to be addressed in order to influence change and shape policy and practice in the future.

Many more young people with terminal conditions who in the past would have died young are living into their adult years. That's wonderful news, but there is a gap in services that they and their families need. They are in the difficult position. Their needs become more complex as they grow older, but they actually receive less support. For these young people, time is of the utmost importance. Delays in decision-making can have a serious impact on their quality of life. We are urging the Government to ensure that the services provided by all agencies are joined up and ready to support the growing number of young people with palliative care needs as they become adults.

Imelda Redmond CBE, Director of Policy & Public Affairs for Marie Curie Cancer

The report’s findings are based on research by Marie Curie Cancer Care into the issues facing young people with terminal illness as they become adults.

The report makes a number of recommendations for change at local and national level, including:

1. The Prime Minister should lead a cross-government initiative to improve support for young people who need palliative care, and their families.

2. The Government should accept the Law Commission’s recommendation that local authorities should have the power to assess the needs and provide services to 16 and 17 year olds.

3. Once a young person with palliative care needs reaches the age of 14 a wide range of children and adult services should jointly agree a five-year rolling plan which tapers services towards transition.

Because of helpful advances in medical research, we are now seeing a significant number of young adults with life-limiting conditions living into adulthood. Yet age appropriate health and social care services are few and far between and are not meeting the needs of all these young people. Too often families tell us that they find this time in their lives incredibly stressful, as they leave children's services and struggle to find the right support. Working together with governments, commissioners and providers, we must take urgent action to address this growing issue. Today's report, I hope, will be a real catalyst for transforming support for this group of young people.

Barbara Gelb, Chief Executive of Together for Short Lives

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