" "


Landmark report on NHS Continuing Healthcare – demands immediate action to save lives

“It was as if my life didn’t matter, just the pennies.”

Alongside two other UK leading spinal cord injuries charities, we are today publishing “More than a number”. This landmark report, sponsored by solicitors Leigh Day, calls for urgent action to address serious concerns in how the NHS funds care for severely disabled people. Spinal Injuries Association, Back Up and Aspire – who collectively represent the 50,000 people living with a spinal cord injury as well as the hundreds of thousands of people who are their families, friends and loved ones – are demanding immediate changes to essential and life-saving care for disabled people.

More than a Number describes the impact on people’s lives of NHS Continuing Healthcare, an NHS-funded package of care that is intended to support people with the highest healthcare needs to live independent, healthy and fulfilled lives once they are outside of the hospital environment.

Yet many spinal cord injured (SCI) people are still not getting this essential care. The NHS Continuing Healthcare assessment process is open to local interpretation, often framed with the aim of cutting expenditure. Regional variations in eligibility are common, lengthy delays in assessments all too frequent and the appeals process burdensome. Additionally, NHS decision makers want to reduce expenditure on Continuing Healthcare by £855 million by the end of the financial year 20/21, which the House of Commons Public Accounts Committee has said will put patient safety at risk.

The consequences of poor care for severely disabled spinal cord injured people are devastating. The case studies featured in the report highlight the severe health consequences – including the risk of death – when care packages are arbitrarily reduced and take months or even years to get reinstated. As one contributor commented. “It was as if my life didn’t matter, just the pennies.”

The charities are demanding that:

  1. Care and support packages must meet people’s needs and aspirations. Commissioning by Clinical Commissioning Groups (CCGs) of NHS Continuing Healthcare (CHC) care and support packages must meet all of that person’s assessed health and associated care needs and be in their preferred setting.
  2. Eligibility decisions must be legal and comply with the Care Act. Decisions on eligibility for NHS Continuing Healthcare by Clinical Commissioning Groups must be consistent with primary legislation, case law and statutory guidance.
  3. Clinical Commissioning Groups must be held to account. Oversight of the delivery of CHC must be independent and effective and include meaningful sanctions for those organisations found to be failing.

Nik Hartley OBE, Chief Executive of Spinal Injuries Association said. “Across the party manifestos there is no mention of Continuing Healthcare – the core home-delivered healthcare provision for tens of thousands of people who depend on it to remain alive and healthy. Our multi-charity manifesto sets out what must be the priority for any new government to tackle this emerging crisis.”

In 2013, Maria Adamson, from Lancashire fell down the stairs. She became a tetraplegic with almost no movement below the neck. She spent two years in hospital but just weeks before she was due to go home, her husband was tragically killed in a motorcycle accident.

NHS-funded 24-hour Continuing Healthcare (CHC) made a huge difference. Supported by carers who could manage her complex needs, she was able to live at home and spend time with her family. During this time she had two reviews. Each concluded she was eligible for CHC funding as her health had not improved. At her next ‘routine’ review, her local NHS funders immediately withdrew her 24/7 care, even though previous assessments had confirmed her eligibility for the essential care that enabled her to lead a safe and independent life.The family were forced to ask the local social services department for help. Yet all they could provide was six hours of care a day. Maria had no choice but to move out of the family home and into a care home. She added:

“I’ve been here eight months. It’s not like at home. They don’t really meet your needs and don’t really look after you. I’m terrified that I will be here for the rest of my life. It’s unbelievable how they’ve done this to me.”

At the time of the publication of More than a Number, and following SIA’s involvement in her care, the local CCG have verbally agreed to reinstate her care package. Meanwhile, Maria’s health has declined and she has been admitted to hospital with pneumonia.

Download a copy of the report.

Find out more about how our NHS CHC Advice Service can help you.

Thank you to solicitors Leigh Day for all their help in supporting the publication of More than a Number