Continuing Healthcare (CHC)

Continuing Healthcare campaign quote 'When the CHC assessor finally came, it was clear to me she didn't know anything specific about MND. She said they should only be doing fast track assessments for someone who is end of stage and then followed by saying 'which he clearly is not'. Dad died two days later. Natalie and her dad Graham'

People with MND are missing out on vital continuing healthcare (CHC) at what can be the most difficult time in their lives and when they need the most support.

We need your help to put pressure on the Government and the NHS to improve the system.

Why we are campaigning

A report by the Continuing Healthcare Alliance, which the Association is a member of, has found that the CHC system in England is failing people with MND and other conditions. They are subjected to an exhausting, complicated and intimidating process which has led to inadequate care packages, or being denied CHC altogether. In some cases, the process has been so slow, that when CHC funding has finally been granted the person with MND has died, or died mere days later.

Campaign updates

Further information

With the progression of MND, it can be difficult for people to manage their health needs and so they require extra professional care. This care can be provided through CHC – care that is arranged and paid for by the NHS, in the person’s own home or sometimes in a nursing home. This free care can make a huge difference to the wellbeing of people with MND and their families.

Only 30% of people with MND currently receive continuing healthcare (CHC) and a further 33% are not aware of it or know that they may be entitled to it.*

The MND Association is a member of the Continuing Healthcare Alliance - a group of organisations working together to improve NHS CHC for all who rely on it, now and in the future.

Read the Continuing to care report (the report focuses on England only)

Read the Executive Summary

Read the information sheet for supporters

* Improving MND care survey 2016

For further information and support contact our MND Connect helpline

mndconnect 0808 802 6262