The Continuing Healthcare Information Research Project

Learning Disability Members Update on NHS Continuing Healthcare,

September 2018

From LDE member rep Alison Giraud Saunders

Definition – what this is about

NHS Continuing Healthcare (NHS CHC for short) is funding from the NHS for a complete package of health and associated social care needs. Eligibility depends on whether a person is assessed as having a ‘primary health need’. The assessment of eligibility takes into account the nature, complexity, intensity and unpredictability of the person’s needs.

In March this year I reported back to Learning Disability England about work the Department of Health and Social Care had done to update the National Framework for NHS CHC. Since then a team in NHS England have been working on how to improve the way NHS CHC works for everyone. This team is called the Strategic Improvement Programme (SIP). They ask voluntary organisations, including Learning Disability England, to comment on some of their work.

On 30 August the SIP held one of their consultation meetings to talk about the NHS CHC workforce – the skills and the training that local NHS CHC teams need. Lots of us said they need to include:

  • Really listening to people who are experts about their own lives and support needs
  • Listening to, involving and respecting families
  • Communication and capacity
  • Understanding ‘enough’ about different conditions that people may have – so they know who else may need to be involved to give specialist advice
  • Proper understanding about personalisation, including personal health budgets
  • Understanding that NHS CHC isn’t just about health care, but about a complete package of support.

They also talked about a new website they are planning. This will bring together in one place all the information people might need. I asked if there would be easy read information, and also if there would be information for young people (and their families) as they move into adult life. They are thinking about it.

NHS England is paying for some work to be done to find out whether people get good information about NHS CHC. There is an online survey, which should take about 10 minutes. You do not have to give your name.

If you have experience of NHS CHC, you can take part in the online survey until 30 September 2018 by clicking this link:

If you would like to download this information please click here