Public health gaps are leaving many spinally injured people vulnerable through lack of overnight care, trapped in inappropriate nursing homes or forced to move away from their communities.
That is according to experts at the Spinal Injuries Association (SIA) who have shared with NR Times their concerns about the impact of public health care gaps on the UK’s spinal cord injured population.
This month, new chair of the SIA Faisal Hussein underlined the current public health challenges facing people living with spinal injury saying: “It is clear for anybody that lives in the UK to see how pressurised the NHS and the care sector is. There is huge demand and long wait times for the services available to people with spinal cord injury both at major trauma centres and at some spinal injury centres.
“Workforce pressures in recruitment and retention, delayed discharges, pressures on Ambulance services including A&E handovers, reduced bed capacity and cuts to continuing healthcare budgets. All of these factors combined are adversely impacting spinal cord injured people.
“The problem is discharging people to an environment where there’s fewer care support mechanisms in place. Care agencies are struggling to provide support to the spinal cord injured communities and other disabilities who need them.”
There are an estimated 50,000 people living in the UK with a spinal cord injury, with around 2,500 new injuries or diagnoses per year.
Figures show a planned spending for the Department of Health and Social Care in England, for example, gradually rising from £180.2 bn in 2022/23 to £184.5bn in 2024/25.
But the SIA believes the projected measures to fill care gaps are not enough to give the spinal cord injured community the public health provision it needs.
Joss Macdonald, parliamentary and public affairs co-ordinator at the SIA, tells NR Times: “NHS finance chiefs have told the Government in clear terms that they need an extra £7bn to fill current shortfalls.
“The £3.3bn offered by the Chancellor is less than half of that. We are extremely concerned about the grave impact this serious underfunding could have for specialist spinal services, and the level of medical care that spinal cord injured patients often require.
“We also note that there has been no commitment to inflation proof the wages of hardworking staff in either the social care sector or the NHS, despite the fact that persistent low wages are one of the major reasons for the current crisis in social care, and looks to be a cause of major disruption in the NHS this winter.
“We feel extremely frustrated and let down that the Government has yet again delayed the reform of adult social care and the introduction of a lifetime cap on care costs, as per the Dilnot Report in 2011.
“We were promised reform in the General Election of 2019, but we are now told we will have to wait until at least 2024 for this relatively modest reform of the system.”
The impact of service cuts, locally and nationally, is “seriously affecting the ongoing care and support that spinal cord injured people need and deserve”, says SIA campaigns manager Dave Bracher.
He continues: “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.
“Spinal centres provide the A class of rehabilitation and treatment but not everyone is lucky enough to go to one so what happens to those patients when they come home. Without the guidance and expertise it is too easy for them to fall into cycles of poor health involving bowel, bladder and skin.”
The Department for Health was unavailable for comment within our deadline for this article.
Aside from the immediate challenges caused by lack service capacity and provision, spinal cord injury survivors like Simon Pinnell, also face deep-rooted societal issues that may take generations to change. Misconceptions about how SCI affects a person are widespread and can cause difficulties in daily life.
Simon (pictured), an advocacy manager at the SIA, explains: “There are those out there who think it is sporadic in how a spinal cord injury affects you. For example, some people may wrongly assume you can walk a couple of steps on to a plane and for some that is impossible and for others with an incomplete injury they may be able to walk short distance with a walker or frame but then need a wheelchair if they go out and about.
“A common misconception is how they might need to use that wheelchair whether permanently or for certain activities.
“Some people hear the word injury and assume like all injuries that over time the injury will improve, and this is not the case with spinal cord injury, a complete spinal cord injury will not improve over time.
“Spinal cord injury can’t physically heal, the majority of the healing is undertaken in your rehabilitation both from a physical and mental health perspective and much of this goes on in your head.
“People also don’t realise that your legs don’t move at all, they see you sitting down and assume you have moved your legs to get there when in truth you have either used your upper body strength or had help.
“People don’t understand that you don’t know when you want to go to the toilet, you don’t have that sensation of I need to go the loo, that’s been in your brain since you were 2 or 3.
“There is a common misconception that you can’t actually do anything, you can’t drive, you can’t work, you can’t have relationships, you can’t be a parent, you can’t father a child or become pregnant. All of those things are achievable, and many are.”
Read more spinal injury stories on NR Times here.
