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Written on 7th December 2021 by Susan Brown

Spinal Injuries Association (SIA) recently published their report, What Matters 2021: A report on what really matters to spinal cord injured people in the UK today. Based on SIA members’ responses to a survey asking them to say what obstacles prevent them from leading fulfilled lives, the report identifies the main concerns of spinal cord injured (SCI) people living in the UK today.

The report highlights that people with SCI experience an unacceptable lack of access to fundamental social, support and health services that people without an SCI or disability take for granted. SCI-injured people are struggling to access healthcare from GPs and other health professionals with spinal cord injury knowledge or expertise, mental health support, or to pay for essential treatments such as physiotherapy. Many expressed their fears about ever needing hospital care by medical staff with little or no SCI-specific knowledge. Over 70% said that lack of access to social care was their biggest worry.

What Matters 2021 recognised the detrimental impact that COVID-19 had on the SCI community, such as from lack of guidance on shielding, the re-purposing of specialist spinal cord injury centre beds, inability to access GPs and care workers, and confusion about SCI people’s vaccination status and priority. However, like other recent reports, SIA says the need for urgent change goes far beyond the impact of the pandemic.

What is spinal cord injury or SCI?

The long, fragile bundle of nerves that make up the spinal cord run from the brain stem to the base of the spine. The brain communicates with the muscles and organs and other functions of the body via the spinal cord, so when the spinal cord is severed (cut) or injured, there is a permanent loss of communication between the brain and those parts of the body that are below the level of the injury.

Spinal cord injury causes permanent loss of feeling/sensation, loss of function (use of the affected part) and disability.  The higher the level of injury to the spinal cord, the worse the disability. The outcome also depends on whether the spinal cord was compressed or cut, the handling of the person after the injury, the speed with which it was treated, and the timing and quality of the injured person’s rehabilitation. Disability from SCI is usually permanent and often affects the injured person’s ability to breathe, walk, live independently and self-care, work, communicate and manage their environment. In some cases, the vertebrae (bones of the back/neck) may be broken without injury to the spinal cord. Surgery or treatment may be needed to immobilise, stabilise and support the spine whilst the bones heal, followed by rehabilitation, (such as physiotherapy). The injured person may avoid the devastating disability of a spinal cord injury, but may find their injury restricts their lifestyle in other ways, for example, if they can no longer carry out heavy manual work.  

What is SIA?

SIA or Spinal Injuries Association is a charity which provides advice, information and support, and campaigns for the best treatment, care and support of people with spinal cord injuries.

In early 2021, SIA asked their members to share their opinions and experiences about what prevents them from leading fulfilled lives. 476 members completed the survey and 40 members provided more detailed information in focus groups during the summer of 2021. SIA’s What Matters 2021 report sets out the results of that survey. 

What did SIA’s What Matters report say?

SIA asked their spinal cord injured (SCI) members about their main concerns in their physical health, mental health and daily life.

The most common physical concerns were:

  • Their health professionals’ lack of knowledge about SCI bowel management (77%);
  • Their health professionals’ lack of knowledge about SCI bladder management (75%);
  • Problems with pain management (46%);  
  • Concerns about ageing with SCI and skin management (40%) including getting information about pressure ulcers.

Although GPs have a key role in referring SCI patients to specialist medical and social care, many GPs had never had any experience in caring for an SCI patient. The lack of knowledge and understanding of SCI amongst medical practitioners left many SCI-injured people fearful of what would happen if they needed care in a hospital or care home where the staff had inadequate training or experience in providing medical care for people with SCI.

The most common mental health concerns included difficulty in accessing therapists who understand SCI, both after the SCI and after leaving hospital (42%). Almost half those who answered the survey said that poor mental health was one of the biggest barriers preventing them from leading a fulfilled life. Many were unable to access mental health support, and the pandemic lockdowns had increased their isolation, with even less or no access to carers or support workers.

When asked about their greatest concerns in daily life, the most common were:

  • Lack of funding for care, access to benefits including comments about the degrading and inadequate benefits system, and lack of access to social care support (70%);
  • Concerns about eligibility for NHS continuing health care and care packages (25%);
  • Adapting their home to meet their post-injury needs ( 40%); 
  • Access to wheelchair and mobility equipment (22%);
  • Access to employment (55%);
  • Public attitudes to disabled people (44%).

Concerns about care were the biggest worry for almost three quarters of those who answered the survey. Some had been left without carers during the pandemic. Others experienced unacceptably high turnover of care staff provided through a continuing care package. Others were using family as carers because of the high cost of care. Many said they were worried about how they would pay for home adaptations, wheelchairs and cope with the high cost of a lifetime of care.

Other concerns in daily life included lack of access and funding for mobility needs, including problems accessing public transport, parking, Motability scheme and air travel. Over half those who responded said that limited access to employment prevented them from living an equal life.

Claiming compensation to meet the needs of people with spinal cord injury (SCI)

SCI injuries are devastating, and we support SIA’s campaign to ensure that all those who live with disability from SCI should have access to informed medical treatment, emotional and financial support, and adequate care.  

For those whose SCI was someone else’s fault, in a road accident, a fall from height, a workplace or sporting accident, or the result of delays or mistakes in medical care, the best way to secure access to rehabilitation, essential care, equipment, therapies, home adaptations and other financial provision may be through a claim for compensation. Claims arising from spinal cord injury are complex and require experience and understanding to secure compensation which will meet the injured person’s lifelong needs that arise from their life-changing disability. It is vital that SCI compensation claims are handled by specialist solicitors who are experienced in recovering compensation for severe, catastrophic disability.

If you or a member of your family have severe disability as a result of someone else’s negligence, and you would like to find out more about making a claim, you can talk to one of our solicitors, free and confidentially, by contacting us here.