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‘What Matters' 2022 is released today

‘What Matters’ our annual report to understand the main obstacles for spinal cord injured people living in the UK  is released today, with responses from more than 500 SCI people and their friends and family.

Our chief executive, Nik Hartley OBE, said:

“We’ve had an overwhelming response to this year’s ‘What Matters?’ survey with even more of you, our members, taking time to answer the vital questions; from every one of us here, thank you. We are nothing without your voices and unique experiences and by sharing them, you give us a living, breathing picture of what it really means to live with a spinal cord injury.”

Lady walking her dog in countryside. Holding lead in left hand and walking stick in right hand

This annual survey exists so we can find out what barriers stop you from living a fulfilled life.

Some of the key findings include:

Your top physical health concerns

  • 72% said bowel management
  • 66% said bladder management
  • 51% said pain management

Your top mental health concerns

  • 46% said access to counsellors and therapists who understand SCI
  • 45% said a lack of specialist rehabilitation support
  • 41% said specifically anxiety or depression has impacted them

Your top barriers to leading a fulfilled everyday life

  • 92% said that society’s attitudes about people with disabilities were a barrier
  • 89% said they were worried about adapting their home for their needs
  • 75% said access to employment is a barrier to leading an equal life

Nik added:

“It is clear from your responses that many of you face tough and unnecessary barriers – undermined by a beleaguered health and social care system which is too often letting down the people it aims to serve. Something we feel is emerging is the complete lack of specialism outside the specialist centres: for example, 72% of respondents told us they were concerned by health care professionals’ lack of any SCI knowledge when it came to basic bowel management and care.”

Susan Evans of Woodhall Spa in Lincs echoes this sentiment in her response to the survey:

“General hospitals MUST train staff in basic care of SCI. Bowel management is non-existent in a general hospital and this causes the most distress and danger to a spinal patient than anything else.”

So, what will we do?

We are expanding specialist services for you – counselling, OT as well as our specialist nurses – but at the same time building a set of resources and trainings for non-specialist settings – care homes, hospitals, and GPs. We will make the case to all levels of the NHS that constructive, informed investment to build knowledge and expertise in SCI across these sectors will save money in the long term, and crucially, it will save lives.