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What Matters - the latest blog from our CEO

As we launch the findings from our What Matters survey and conversations with over 400 spinal cord injured people, our CEO, Nik Hartley OBE, summarises what the report has revealed and highlights the desperate challenges people are facing and the expanded work and campaigns SIA will need to take on, to raise the voice of spinal cord injured people and their families.

We were tempted to pause on our nationwide What Matters survey as the pandemic took hold, but when we spoke to our members it became clear it was exactly what we needed to do – as the pandemic has not just affected but exposed so many much longer-term barriers to SCI people day in day out.

When your read the report you will like me probably agree that the most striking repetition, whatever the subject, is ‘a lack of access’; to services, to medical expertise, to mental health support, to information, to physiotherapy

download our report here

Even the most fundamental health priorities – bowel and bladder management – important to almost all respondents, shockingly finds 40% of people telling us their GP and/or local health services didn’t understand bowel management.  We hear that access to mental health support – hugely important, especially during lockdown – shockingly for nearly half the people surveyed is not followed up with access to any support at all. Members tell us they feel abandoned. The strength of response to mental health has in fact been so strong, we have made a commitment not to wait for our longer-term plan and outcomes but to rapidly work out how to both expand our own professional peer-led counselling service and also to build a mental-health advocacy offering and to crucially launch research to lobby for change. Watch this space.


40% of respondents told us their GP and/or local health services 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.

Less surprising perhaps was that more than half of the respondents told us they felt lack of access to employment was a major obstacle to living a fulfilled life, and yet a stand-out behind this was that they could not even get to the point of thinking about employment as basic care was blocking everything – over 70% told us a lack of access to social care was their biggest worry.
This lack of access to the fundamental social, support and health services that you will read throughout the report – is a tough read for anyone who cares. It 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.


For over 70% of people, lack of access to social care was their biggest worry

Covid has clearly had a detrimental impact on our community with, amongst other things, a lack of guidance on shielding, the repurposing of specialist spinal cord injury centre beds, an inability to access GPs and care workers, and confusion about vaccination status and priority.

But the messages you will read confirms things have got to change well beyond the pandemic. It cannot come soon enough, with debates on social care, mental health and the pandemic all missing out the voice of the very people most affected. Using this research as our foundation and catalyst for change, SIA commits to plan and budget into the next 18 months to re-double its services in the key ‘body, mind and life’ issues that you have told us about, and as crucially to build more research, advocacy and campaigning around each challenge – to fight for the changes that the SCI community so desperately needs.

I urge you to support our work, campaign with us and help SIA raise the voice of spinal cord injured people and their families

Nik Hartley OBE

download what matters