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Pressure mounts in Leicestershire to drop plans to axe NHS Continuing healthcare

Leicester CHC campaign MND

The MND Association has joined national charities and local groups in calling on East Leicestershire and Rutland Clinical Commissioning Group (CCG) to drop plans that could force people living with MND to accept less NHS care than they need at home, or to move into a care home against their wishes.

Under current plans, severely disabled people with the greatest care needs are assessed under the NHS Continuing Healthcare scheme. If eligible, this funding provides round the clock support at home and in many cases is the difference between living a fulfilled life at home with carers and facing the prospect of being moved into a care home, potentially many miles away from home. The proposals are a result of a desire to cut costs.

In July, the MND Association welcomed the move by two of the three CCGs (West Leicestershire and Leicester City CCGs) to defer their decision, in response to the concerns we had raised. A spokesperson for NHS Leicester City CCG said at that time the proposal “affects some of the most vulnerable patients in our population, including many with disabilities and terminal illnesses. It is therefore important that we make decisions about their care with full knowledge of the impact it would have.”

However East Leicestershire and Rutland CCG have ignored concerns, and at their last Board meeting, voted to proceed subject to minor amendments. The controversial ‘Settings of Care’ policy that sets out the changes will again be discussed at its board meeting on Tuesday 8 August.

Our Chief Executive Sally Light said:

“The funding proposals discussed by each CCG sought to limit patient choice of where they live and receive care on purely financial grounds.

People with terminal illnesses like motor neurone disease (MND) may spend the last months or weeks of their lives with the threat of being moved into residential care hanging over them, creating unnecessary turmoil and worry for them and their families.

We’re calling on Leicestershire CCGs to rethink their plans and to undertake a detailed impact assessment to consider the consequences of their decisions on severely disabled people before any further steps are taken.”

Take action

Concerned patients and members of the public are encouraged to join the MND Association and others at the East Leicestershire CCG board meeting at 9.30am on 8 August at Leicestershire County Council’s County Hall. Further details are found here.

Supporters can also help by highlighting the issues on Twitter:

I'm standing with families facing #MND in #Leicestershire by calling on @NHSELRCCG to drop NHS #CHC cuts RT! Click To Tweet

For more information contact: Alice Fuller, Campaigns Manager (East) – or 0207 250 8452.


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