“A breath of fresh air” – CHC update February 2021

Guest blog by Alison Giraud-Saunders, Learning Disability England’s volunteer representative on the CHC Alliance and the NHS CHC national stakeholder group

Learning Disability England is a member of the national ‘CHC Alliance’ – voluntary organisations campaigning for fair and effective NHS Continuing Health Care (CHC) processes.

The Alliance is concerned about long delays for NHS CHC assessments and poor quality of assessments and support planning.

NHS CHC teams in some areas are helping with other health care priorities because of Covid 19.

The CHC Alliance is waiting for a meeting with NHS England and NHS Improvement to talk about the current experiences.

There is a separate campaign led by one individual who wants a Judicial Review of the Government guidance on assessing eligibility for NHS CHC: https://www.nhschcscandal.co.uk/

People who are eligible for NHS CHC have a right to a Personal Health Budget.

One person’s story (below) shows that it sometimes takes a lot of determination to get your own budget, but it can make a big difference to how you feel.

   “A breath of fresh air”

Anna (not her real name) is a young woman who has had NHS Continuing Healthcare (CHC) since shortly after turning 18. She lives with her family and support was commissioned directly by the Clinical Commissioning Group (CCG).

A local support planner started doing some planning with Anna and her mum early in 2020 to think about the future and Anna moving out to have her own place.

It was soon obvious that Anna’s existing support wasn’t working at all well. Anna has a variety of needs, but the support workers were not given clear guidelines (for example, about epilepsy, positive behaviour support, communication).

Her autism diagnosis without a learning disability has made accessing local services difficult.

Things became even more difficult during the first lockdown and over the summer. It was clear that the support was at risk of breaking down, with an overstretched and poorly supervised core team and staff leaving.

Anna was becoming more and more distressed and exhausted. She was clear about what she wants and who the best people are to support her; she and her family wanted a personal health budget (PHB) to achieve this.

She talked about office staff choosing her supporters and said she wanted those close to her to help her choose.

Covid 19 demands on the NHS resulted in the local PHB team being redeployed to other duties. Anna was told there might be a long wait.

As a temporary measure the CCG suggested that a ‘notional’ PHB might be offered – that meant an organisation holding the budget and recruiting Anna’s team on her behalf.

The support planner started to contact support providers who might do this. Meanwhile the existing support provider gave a month’s notice.

Anna was then told that the CCG had decided to put her support out to tender. Fortunately the CCG were persuaded to reconsider and Anna now has her PHB.

It’s very early days and recruitment during the pandemic has its challenges.

But working with a PHB feels like a breath of fresh air and it now feels possible for Anna and her family to look ahead with hope.

NHS Continuing Healthcare (NHS CHC for short) is funding from the NHS for a complete package of health and associated social care needs. You can find out more here (easy read)