When I was 18, a long period of depression led me to jump from a height in a suicide attempt. In doing so, I sustained life-changing spinal cord injuries that to this day mean I have little mobility or sensation below my waist and my bowel and bladder do not work.
Yet only a few years after that first attempt, I tried to take my life again. One of the main reasons was due to the lack of practical and psychological help I was receiving to cope with my new disability.
The mental health services assessed me using a narrow psychiatric lens noting non-compliance with psychiatric medication as the only risk. This continual failure to register my physical disability by the mental health team was matched by an inadequate response from the physical disabilities team who refused to look after me, citing the suicide attempts and my depression.
Now, aged 49, the only change in my care has been that my bipolar has been recognised as the secondary problem and my spinal cord injuries as my primary issue. Yet, for some unknown reason, I am still a patient with the mental health team rather than physical disabilities. My needs straddle both health teams but as they don’t work together, they are not getting met.
There are an estimated 50,000 people who live with a spinal cord injury in the UK, and 2,500 people sustaining an injury every year. I wanted to find out how those with a more recent injury and also a mental health condition were being treated.
Eleanor, 41, told me she too suffered severe spinal cord injuries after a suicide attempt six years ago. When she had recovered enough physically, she was moved on to a psychiatric ward for treatment for her mood disorder.
She says: “I had to be placed on a different ward on the ground floor, separate to everyone else but even then, there weren’t any disabled toilets or hoists and the staff were unwilling to help. As well as my three unstable fractures both my legs were in casts, so I had to put bin bags on them to cover them when I was trying to wash myself. Soon my legs started to smell. The staff tried to tell me I was having olfactory hallucinations, but I knew it was my feet rotting as water had leaked into the casts.”
Since coming out of hospital one of her main physical problems has been pain, but she says, because she had taken an overdose in the past, there was a flat refusal by both her GP and pain clinic to give her suitable medication: “All I was offered was mindfulness – by phone.” She says to get the pain relief she needed, she had to go privately, with the help of her parents.
Eleanor believes she has continued to face judgmental attitudes: “I had a real set-to recently with a GP about giving me medication for breakthrough pain. I’m in my 40s but my mother had to intervene and say she would take responsibility, which I find just ridiculous. They see my mental health problems but not my physical disabilities.”
Tammy, 52, who also has spinal cord injuries, feels there is not a good enough understanding by mental health services of the impact of such an injury. Following her injury in 2009, she was diagnosed with fibromyalgia. The pain connected to the spinal cord injuries has increased considerably with this diagnosis and, along with the trauma she experienced, has contributed to two serious suicide attempts.
“I don’t think they understand how debilitating it can be – especially when you have more than one condition. You might have a good day with one disability but find the other is playing up. You have so much more to contend with, just to get up and take a shower. They just don’t get it, or the emotional pain that can hit you like a bereavement.”
Tammy was offered some limited help from a psychotherapist, but what she felt she really needed was support from the pain clinic.
“My life consists of me sitting in bed, all day. I have a fear of going out that used to be due to worries about my bowel and bladder or problems with pain and fatigue, but now it’s worse than ever because I feel mentally done in.”
Like Tammy, I too became scared of going out. My spinal cord injuries isolated me at home. This then impacted on my already fragile mood, which in turn made the situation worse. The mental health team suggested an increase in my antidepressants, failing to address the complex nature of my problems.
Of course, it isn’t just those with a spinal cord injury who might have such difficulties. In England, 46% of adults with a mental illness have some form of long-term physical disability.
When so many people are affected and the links between mental health and physical disability have long been known, why have my experiences of joined-up care, and those of many others, been so patchy or completely absent?
The answer might seem clear-cut, in that care for those with physical disabilities and mental illness has been historically and, to this day, organisationally distinct. But the failure to think holistically and work in partnership with other professionals is something rarely appreciated unless you, or someone you care for, is on the receiving end, passed from service to service, in a bewildering and time-demanding process.
Liaison psychiatry teams, now present in A&E and general hospital wards in England, are supposed to provide longer-term interventions to bridge the divide between physical and mental health care. These teams could be invaluable in coordinating the various medical disciplines involved as well as those outside the hospital, such as wheelchair services and supported living initiatives.
However, Dr Allan House, the emeritus professor in liaison psychiatry at Leeds University’s School of Medicine, told me these teams are “under-resourced for the scale of the challenges they face”.
Recent investment from NHS England has led to an increase in liaison psychiatry staff. “But this is targeted at improving 24/7 acute care, rather than the management of complex long-term conditions,” House explains.
The Spinal Injuries Association (SIA) has recognised the impact of gaps in mental health services and has developed a telephone counselling service and a peer support network.
For Michael from Lancashire, who was involved in a catastrophic accident on his bicycle last year, aged 67, the peer support from Gary was invaluable.
“The fact that Gary was in a wheelchair with a very similar level of injury got all our attention from the start. His knowledge about rehab, essential skills that I would need to develop, and the challenges that we faced were everything that we needed to hear. He didn’t sugarcoat it or say it was without its challenges, but for the first time since the accident this meeting with Gary provided us with a route map to a life, a different life for sure, but a life nonetheless.”
The development of the charity’s telephone counselling service was, in part, to fill the gap in ongoing NHS psychological support for people with spinal cord injuries: “We see it as essential that everyone affected by spinal cord injuries has access to lifelong, expert counselling support when required, and it’s very concerning that wider NHS mental health services in general are under such pressure at the moment,” says a SIA spokeswoman.
She says it is also committed to raising awareness of these issues at the highest levels of government and NHS England to secure the long-term investment in ongoing psychological services that is so desperately needed.
Alex Thomson, a consultant liaison psychiatrist at Northwick Park hospital, echoes the call for improvements in long-term services but believes it shouldn’t just be left up to members of a liaison psychiatry team to bridge the gap between mental and physical illness: “All staff in acute or community settings need to have a baseline level of skill and awareness to respond supportively to those with both spinalinjuries and mental health needs, so that all health services can meet the needs of people with multiple conditions,” he says.
I believe it will be only then, when the NHS is on the path to providing high-quality services and partnerships, that those with complex disabilities will be viewed holistically, lessening the chance of someone being left behind or failed, like I was all those years ago.
• Ruth F Hunt is a freelance journalist and the author of The Single Feather (Pilrig Press)
In the UK and Ireland, Samaritans can be contacted on 116 123 or email email@example.com or firstname.lastname@example.org. In the US, the National Suicide Prevention Lifeline is 1-800-273-8255. In Australia, the crisis support service Lifeline is 13 11 14. Other international helplines can be found at www.befrienders.org.