Urgent improvements are needed to the NHS continuing healthcare (NHS CHC) system in England, a new report reveals today. The system is fundamentally flawed and failing the most vulnerable in society says a coalition of non-profit organisations, called the Continuing Healthcare Alliance.

NHS CHC is free care provided outside of hospital by the NHS for eligible people who have care needs due to illness, injury or disability. However new research* by the Alliance has revealed that the system is complicated, confusing and intimidating for those who desperately rely on it.

Over half (54%) of survey respondents who had applied for NHS CHC were not provided with enough information about the assessment process or given any support with applying. Their experiences are reinforced by health and social care professionals, with over a third (39%) claiming that the assessment process was difficult or very difficult to navigate and more than three quarters (78%) stating that the system is difficult or very difficult for patients and their families to navigate. An overwhelming 80% of healthcare professionals also felt the Decision Support Tool (DST), used to decide whether someone should receive NHS continuing healthcare, was either not fit for purpose or there was room for improvement.

Despite national guidance outlining that specialists should be included in assessments, two thirds (66%) of people who went through this process felt that the professionals involved lacked, or had very little, in-depth knowledge of their condition.

Of those who had been told by the professionals who conducted the assessment that eligibility would be recommended, over a third (35%) had that decision rejected by the review panel.

The Alliance has called for NHS England and the Department of Health to urgently address the numerous shortcomings of the system to ensure that people in the greatest need are not abandoned.

Morgan Vine, Policy and Campaigns Adviser at Parkinson’s UK and Chair of the Continuing Healthcare Alliance said;

“With significant cuts to social care and access to welfare benefits being restricted, some of the most vulnerable people in our society are seeing too many avenues of support being stripped away. This makes the failures of the NHS CHC system even more harrowing.

“What we hear time and again is that seriously ill people are being put through a complex and bewildering assessment process, often only to be told they don’t qualify for support. This leaves them and their carers, confused, angry and isolated.”

“Rapid and robust changes must be made to improve the current system. The Continuing Healthcare Alliance is calling on NHS England and the Department of Health to work with us to ensure that no-one is left without the care they so desperately need.”

Dan Harbour, Beacon’s Managing Director said: “Sadly, the report backs up our everyday experience of hearing from families that are feeling lost and confused by the process of applying for CHC funding, or struggling to understand how an assessment decision has been made. Some people have a positive experience of CHC, but too often, families don’t hear about the possibility of CHC early enough and aren’t supported sufficiently through the assessment process. Even health professionals struggle with the complex and nuanced system, making it even harder for individuals to get the funding and support they may be entitled to.

“Our advisors have helped thousands of families to understand and navigate the assessment and appeal processes, but that’s just the tip of the iceberg. We need to see major improvements in the way CHC is implemented so that the system better supports the sick, injured and vulnerable people it was set up to help.”

To access the Continuing to care? report go to www.continuinghealthcarealliance.co.uk

If you’d like to speak to an independent advisor, for free, about anything to do with NHS CHC, call Beacon’s Information and Advice Service on 0345 548 0300

The Alliance is asking people to share the report with their local MP, to urge improvement to the NHS CHC system. It’s easy to do, just go to this link and follow the instructions.

*The research

In May 2016 The Continuing to Care Alliance sent a Freedom of Information (FOI) request to all CCGs in England asking for information about various aspects of NHS CHC. 129 CCGs responded out of 213. Full details of the FOI are included in Appendix 4 of the Continuing to Care? report.

409 professionals who work in the NHS CHC system were surveyed between May 2016 and July 2016.

274 individuals who had applied for NHS CHC for themselves, or friends and family, were surveyed between April 2016 and July 2016.

About The Continuing Healthcare Alliance

The Continuing Healthcare Alliance is a group of charities and professional bodies who work together to improve NHS CHC for patients and professionals.

The Alliance is made up of 13 members: Parkinson’s UK, Alzheimer’s Society, Age UK, Beacon, Carers Trust, Dementia UK, Marie Curie, Motor Neurone Disease Association, Multiple System Atrophy Trust, MS Society, Sue Ryder, Spinal Injuries Association and Stroke Association.

About Beacon

Beacon CHC is a UK-wide social enterprise with profits donated to charity to fund vital older peoples’ services.

We run a free Information and Advice Service – funded by NHS England but staunchly independent – for people in England who need help to understand and navigate the CHC system. We also have a free toolkit, which provides a comprehensive guide to the system, including eligibility assessments and appeals.

In addition to our free service, our specialist caseworkers provide an affordable, comprehensive and ethical advocacy and support service for people that want extra support.