National and local cuts to services have seriously affected the ongoing care and support that spinal cord injured people need and deserve.
Our community of spinal cord injured (SCI) people are telling us of reductions in care and support. In many cases even crucial night-time cover has been stopped or reduced.
Arbitrary caps are being placed on personal funding, which threatens to force SCI people to leave their communities and be imprisoned in nursing homes.
These cuts are resulting in potentially dangerous NHS Continuing Healthcare packages. These packages, funded entirely by the NHS, aim to support people with the highest healthcare needs. And it set out to give people the tools to lead independent, healthy and fulfilled lives once they’ve left hospital.
This is extremely worrying, as spinal cord people should have the very best bladder, bowel, skin and respiratory management, etc. Only with such care can they lead the fully independent lives that they deserve.
We are campaigning hard for positive change in NHS Continuing Healthcare provision. Alongside Back Up and Aspire, our landmark report – ‘More than a Number’ – was published in December 2019 and calls for urgent action to address our serious concerns in how the NHS funds care for severely disabled people, as many SCI people are still not getting this essential care.
NHS bosses 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
Our report More Than A Number, collated in partnership with spinal charities Aspire and Back Up, describes the impact on people’s lives of an NHS Continuing Healthcare assessment process that’s open to local interpretation, and 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 is complex. NHS bosses are aiming to reduce expenditure on Continuing Healthcare further over coming years.
We’re demanding that:
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.
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.
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.
The consequences of poor care for SCI 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.”
Thank you to solicitors Leigh Day for all their help in supporting the publication of the More Than A Number report.