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Campaigning to improve the quality and accountability of NHS continuing healthcare (CHC)

We are campaigning to ensure the new proposed Integrated Care Systems have clear guidance on delivering CHC packages that work better for families living with dementia.

A new Health and Care Bill, currently progressing through the House of Lords, proposes a major shake-up of how health and care services are organised in England by introducing Integrated Care Systems (ICSs).

Often, there is a disconnect between different health and social care services – for example, between hospitals and community care, and between NHS and Social Services. This can result in disjointed care that fails to meet people’s needs.

Under the proposed ICS structure, new partnerships would be formed between health and care services with the aim to meet people’s needs in a more joined-up way.

Working with the Continuing Healthcare Alliance to help ensure the new system works for everyone

NHS continuing healthcare (CHC) is a package of care arranged and funded by the NHS in England for people with long-term, complex health and care needs.

We are part of the Continuing Healthcare Alliance – a group of 20 charities campaigning to improve the quality of CHC, from assessment to delivery.

The CHC Alliance has been calling for:

  • ICSs to report annually on their performance and quality of services to both NHS England (the national body responsible for the quality of NHS services) and the health and social care regulator, the Care Quality Commission (CQC)
  • NHS England to have the power to take action if an ICS fails to do its job properly

Progress in the House of Commons and House of Lords

In the House of Commons last year, the then Shadow Health Minister, Justin Madders MP, raised the CHC Alliance’s concerns about CHC and how it would be impacted by the ICS plans.

As a result, an amendment was made to the Health and Care Bill stating that the CQC should have a duty to inspect ICSs. This will ensure additional independent assurance.

Earlier this year, in the House of Lords, the Minister confirmed that NHS England will have the necessary powers to take action against an ICS.

As a member of the Continuing Healthcare Alliance, we are pleased that these important issues were debated in Parliament, signalling that the application process for CHC and the way it is delivered might become easier.

This would be a huge step forward for those who face complex health challenges.

Support our campaign for a better continuing healthcare for people affected by dementia

Our Guiding the way campaign has highlighted the challenges that many families affected by dementia face trying to access CHC funding and the distress this can cause.

These challenges include:

  • poor quality decisions
  • a lack of understanding of dementia
  • a postcode lottery when accessing support

We will continue to work with the CHC Alliance, the Department of Health and Social Care and NHS England to ensure ICSs have clear guidance on delivering CHC packages that work better for families living with dementia.