Continuing Healthcare (CHC) person affected by MND personal story

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

January 2023

We continue to work with the CHC Alliance to push for improvements to CHC policy and delivery. We have regular meetings with the CHC team at NHS England and with the office of the Parliamentary and Health Services Ombudsman, whose remit covers CHC. This enables us to communicate the practical issues around CHC delivery that we continue to see on the ground and to push for appropriate actions.

In early 2023, the CHC Alliance provided a written response to the Hewitt Review into the oversight and governance of integrated care systems (ICSs), which now have responsibility for commissioning CHC services in their region. We have called for stronger accountability mechanisms to ensure that ICSs adhere to all national standards and guidance in their delivery of CHC, including the National CHC Framework. This echoes our campaigning activity around the Health and Care Act 2021, when we pushed for clearer accountability mechanisms around CHC to be written into legislation.

We continue to work with the CHC Alliance and external stakeholders to raise awareness of the issues affecting people living with MND in relation to accessing CHC and securing appropriate care and support through the CHC system. 

March 2018

The Department of Health has published a newly revised version of the National Framework for Continuing Healthcare (CHC), which will come into force in England in October 2018, replacing the 2012 edition of the Framework. Although CHC is the responsibility of local commissioners, the National CHC Framework sets out the key principles, processes and standards that must be delivered and adhered to.

The 2018 revision of the Framework contains some positive changes that reflect the comments made by stakeholders including the MND Association. However, it contains some notable omissions which represent a missed opportunity to deliver much-needed change on behalf of those who rely on CHC services.

We are pleased to see that the revised Framework includes stronger requirements around the constitution of multidisciplinary teams to carry out CHC assessments, and the inclusion of greater clarity around the review process for eligibility decisions. Perhaps the most welcome change relates to commissioning, where the revised Framework explicitly rules out using "standard care home costs" as benchmarks for individual packages of care.  This is potentially a significant development in relation to commissioning decisions to introduce cost caps on individual care packages, which threaten to leave people at risk of receiving unsafe levels of care in inappropriate settings.

However, the revised Framework falls short in a number of important areas. It is disappointing that the key assessment tools used to determine eligibility for CHC have received only minor changes, missing an opportunity for a much-needed overhaul to bring consistency and clarity to the assessment process. In addition, despite a recent Public Accounts Committee recommendation to raise public awareness of CHC, the Framework contains no new duties for NHS England on this point, instead leaving responsibility to local clinical commissioning groups. This is likely to lead to a fragmented and inconsistent approach across the country.

The MND Association will continue to work with the Department of Health and stakeholders such as the CHC Alliance to push for further improvements to this vital service.

November 2017

The House of Commons Public Accounts Committee (PAC) held a hearing on Continuing Healthcare (CHC) on November 1st. CHC is an NHS service which funds social care for people with very high levels of need. It has recently been criticised for issues including unwarranted variation in eligibility and access across the country.

The Association was able to provide a written submission to members of the Committee, and also met with the inquiry lead in advance of the hearings to highlight key issues and questions to consider.

At the first session of the hearing MPs heard from witnesses from the Spinal Injuries Association, Parkinson’s UK and Beacon. The second session focused on witnesses from the Department of Health and NHS England, including Simon Stevens, CEO of NHS England, and Sir Chris Wormald, Permanent Secretary of the Department of Health.

The MPs’ questions were generally well-informed and the Association’s briefing was drawn on a number of times for examples and context. The questions covered a wide range of issues, but focused particularly on the degree of performance and spending variation on CHC across different geographical areas. They also addressed NHS England’s plans for cuts to the overall CHC budget, which Simon Stevens confirmed amounted to a total reduction of c.£850 million from planned national CHC spend.

The PAC will now produce a report including specific recommendations for improvement, to which the Government is obliged to give a formal response, expected next year. It will be important for the Association to engage with the Government’s response in order to hold it to account for delivering its promised commitments.

In addition, the Department of Health and NHS England are currently engaging with stakeholders on proposed revisions to the national CHC framework. The Association provided a written response in November.

July 2017

A group of clinicians with experience of working with people living with MND wrote to the Secretary of State for Health to express their deep concern that the system is failing vulnerable patients.

July 2017

The National Audit Office has published a new report on Continuing Health Care, which is available to download. 

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