Leading spinal cord injury charities unite to call for urgent action on care

Three of the UK’s leading spinal injuries charities have published “More than a number” a landmark report sponsored by solicitors Leigh Day calling for urgent action to address serious concerns in how the NHS funds care for severely disabled people. The charities – 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 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 case study 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 health care 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”

Brian Carlin, Chief Executive of Aspire, said. “There is no doubt at all the current system of care for severely disabled people is deeply flawed. “More than a Number” clearly highlights the consequences of poor and at times unsafe care. Our demands are measured, reasonable and practical – and must be adopted.”

Sarah Bryan, Chief Executive of Back Up added. “This broken system places tremendous pressures on the most severely disabled people and this will only get worse if NHS England carries through its plans to make £855 million of cut. We are calling on NHS England to accept and act on all of the recommendations made in “More than a Number.” The patient’s needs must be at the centre of decision making so that severely disabled people have a care system that genuinely engages with them to provide the independence, care and support they need and deserve.”

Read the full report on SIA’s website