Three quarters of people living with spinal cord injury (SCI) are concerned at accessing frontline healthcare due to the lack of specialist knowledge from health professionals about their condition, a new report has revealed.
The What Matters report shows that 77 per cent of people with SCI cite a lack of health professionals’ knowledge of bowel management, with 75 per cent saying this also applied in bladder management, as a cause of concern if they needed to seek medical attention.
The report, from the Spinal Injuries Association, also revealed a host of other concerns for people living with SCI, mainly around access to specialist professionals who understand their needs.
What Matters involved 476 people completing an extensive survey, and 40 followed up with online focus groups, to give a true picture of the reality they face in matters relating to their body, mind and daily life.
Mental health concerns were prevalent and have grown during the pandemic, with almost half of respondents saying that poor mental health was one of the biggest barriers preventing them leading a fulfilled life, with appropriate support difficult to access.
Furthermore, 42 per cent of people pointed to access to counsellors who understood spinal cord injuries, from the point of injury and after discharge, as being crucial.
In terms of daily life, concern around care needs, accessing benefits and social care support was cited by 70 per cent of people.
Eligibility for NHS care packages was highlighted as a primary concern for many, while others voiced their fears about financial hardship caused by paying for a lifetime need for carers, wheelchairs and home adaptations.
Employment was also a key issue in the report, with over half – 55 per cent – seeing access to employment as their biggest barrier to leading an equal life.
“I feel worthless and on the scrapheap since my injury five years ago. I don’t fit in anymore. I’d like some kind of employment scheme, but now due to COVID redundancies there will be even less chance of gaining employment,” said one person quoted in the report.
Nik Hartley, CEO of the Spinal Injuries Association, said the charity is committed to changing the reality for the SCI community and push for urgent action on the issues raised.
He said the report “exposes the gaping valley between what people without an SCI or disability would take for granted – and what someone with an SCI should simply not have to face”.
“The most striking point the survey and focus groups has revealed is, whatever the subject it comes down to a lack of access; to services, to medical expertise, to mental health support, to information, to physiotherapy,” he said.
“Even the most fundamental health priorities – bowel and bladder management – important to almost all respondents, shockingly found 40 per cent of people telling us their GP didn’t understand bowel management.
“Perhaps most startling was how many voiced their fears about ever going to hospital and being cared for by medical professionals with little or no SCI specific knowledge. Almost half the respondents told of general health services not understanding the clear and present danger of pressure ulcers as an SCI person.
“Using this research as our foundation and catalyst for change, SIA commits to re-double its services in the key ‘body, mind and life’ issues, and as crucially to build more research, advocacy and campaigning around each to fight for the changes that the SCI community so desperately needs.”
