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Government to offer genome sequencing for seriously ill children in England

News and comment

Together for Short Lives has welcomed ministers’ plans to offer genome sequencing to people in England with a rare disease from 2019 – and to prioritise investments in preventative healthcare. The news has been set out in a new vision for preventative healthcare announced by Health and Social Care Secretary Matt Hancock.

Genomics – the study of a person’s DNA – can help achieve a more accurate and timely diagnosis where one may not have previously been possible. This has the potential to improve treatment and bring about more timely care and support for children with life-limiting or life-threatening conditions.

The government’s new green paper, ‘Prevention is better than cure: Our vision to help you live well for longer’, outlines the government’s ambition to improve public health by prioritising prevention over treatment. It sets out plans to prioritise investment in primary healthcare and to empower local decision makers to improve community health.

Welcoming the new vision, Andy Fletcher, Chief Executive of Together for Short Lives,said:

“I welcome the minister’s ambitious targets on genome sequencing, which could lead to significant improvements in the way in which serious illnesses in children are diagnosed – and the speed at which these children and their families are offered the palliative care they need.

“I also welcome the government’s focus on investing in services which will maintain and improve people’s physical and mental health. Children’s palliative care services, provided in hospitals, children’s hospice and at home, make sure that seriously ill children and their families receive vital help when and where they need it. This includes support to manage symptoms, to get a regular short break and to access to social, emotional and psychological support to help them come to terms with their loss. Children’s palliative care services can help to prevent unplanned, emergency admissions to hospital for children with life-limiting conditions, and it is important that they are funded sustainably to achieve these important outcomes.”

Using the total population of children in England, the National Institute for Health and Care Excellence (NICE) calculate that by investing £12.7million in implementing its guidance on end of life care for babies, children and young people, non-cash savings worth £34.7million would be released back into the NHS in England. This is because investing in these services prevents children and their families reaching crisis, at which point they may find their only option is to rely on emergency services.

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