How can this be? Read our CEO's response to our new report
It’s not often I’m left speechless, but today’s (17 Nov 2021) news that people with a spinal cord injury are three time more likely to consider committing suicide than the rest of the population, has left me reeling.
Our new report, ‘It’s not just physical’ based on research we commissioned the Universities of Reading and Buckingham to undertake has given insight into the misery that so many SCI people have told us they must endure, most shockingly of all with little or no support for their mental health. It highlights that psychological damage caused by a SCI is, at best, considered as an afterthought, and at worst ignored by the medical profession.
48% of SCI people taking part in the research had been diagnosed with depression, anxiety or PTSD (post-traumatic stress disorder). Half of our SCI population!
And yet when SCI people do seek help with their mental health, the rare options offered are referrals to psychology staff who are so inexperienced in the conditions and psychological impacts for SCI people that the research reveals therapies make no difference, or in some cases make their condition worse. Our report reveals 68% of SCI people interviewed said they’d stopped their therapy for these reasons. How can this be?
The outcomes of this research are so stark that while we are continuing as a charity to explore modelling and approaches for mental health support over the longer term, we have agreed to move to more urgent action, both rapidly to upscale the charity’s capacity to step in and then campaign as urgently as possible for fundamental mental health services that are sufficiently specialised to support the thousands of people living with this type of injury – before it is too late.
So many of you, our members, revealed in this research that you needed help immediately after sustaining your injury, but instead had had to wait months before you were able to get any kind of support. Many of you spoke of feeling abandoned once you’d left the hospital, the sudden transition from full-time medical care to being back in your own home leaving many of you feeling utterly overwhelmed.
We have learnt that pain is a major factor when it comes to poor mental health. Most people understand that living with pain is debilitating, but this research showed the damage to your mind that constant pain alongside life-long paralysis causes. 71% of SCI people told us they live with pain every day.
And the research has revealed it’s not just SCI people who are suffering – it’s their families too. In many cases, an SCI person is cared for by a partner or parent. 81% of the unpaid carers we interviewed told us they felt a sense of shared trauma with their injured family member, with 75% (three quarters) telling us they felt their own mental health needs had been side-lined.
So what’s to be done?
In terms of our campaign, we are immediately calling for
- An urgent overhaul of access to psychological support:
-Immediately following injury
-When people are discharged from hospital to another care setting or to their home
-Available for the long-term
- Medical staff supporting SCI people with their mental health, to be trained both in how their physical problems will impact the psychological, and in a basic understanding of the physical conditions that underpin SCI people’s mental health support needs – such as basic knowledge of bladder, bowel, skin, and pain management
- Newly injured people to be screened for pre-existing mental health issues and immediate but long-term plans agreed
- A full risk assessment that includes mental health and psychological risk factors, to be carried out before a SCI person moves from a care setting (hospital, nursing home, care home) into their own home
In the meantime, SIA is going to invest in its own specialist counselling service led by spinal cord injured professional counsellors. We will also immediately look into expanding our advocacy service to help SCI people negotiate their health and care service provider to include more immediate and appropriate mental health support, and the training carried out with our specialist clinical teams to include training of mental health professionals and service providers. We have launched an appeal to make this all possible as it is an urgent, humanitarian issue.
If you want to help us fight, please consider giving a donation to SIA today, and please join our campaign that we will be rolling out on this crisis for spinal cord injured people. Thank you for your support.
Nik Hartley, OBE, SIA chief executive officer