From Melanie Reid in THE TIMES, 12 May 2018:
There is always someone worse off. When you have a chronic condition, as a significant percentage of the population does, you can always find someone who makes you realise your life is, by comparison, a breeze.
I tried to convince myself of that last week as I fainted on my shower chair, puking, mewling, lolling, drifting away into a white nothingness. At that point, I just wanted to die as quickly as possible. When I came round, an aghast Dave was trying to decide whether to phone my carer or the undertaker.
Later, shaky but OK, I rationalised it. Just a bad day: my usual low blood pressure, the fate of all with spinal injury, worsened by the impact of two simultaneous antibiotics for a bladder infection. On the whole, I’m one of the most fortunate tetraplegics I know. I don’t need full-time carers, and I can feed myself, move around, work, and cherish my family. My situation, as with all chronics, is precarious, but I’m sorted. My care is under my control.
After speaking to a woman called Sue Franklin last week, I’ll never again question how lucky I am. A university lecturer in health and social care, Sue was in her mid-fifties when an epidural abscess high in her neck left her totally paralysed – no use of her hands, arms, nothing. She needed to be fed, washed, toileted, hoisted, turned in the night. She couldn’t operate the joystick on a power wheelchair. After 15 months in hospital, she went home, requiring 24-hour care.
Her husband, a hospital consultant and emeritus professor at Sheffield University, could look after her at night, but during the day she needed complex care. This came from Sheffield’s NHS clinical commissioning group (CCG). Funding for it, however, would come from NHS continuing healthcare (CHC) – its stated job, to meet the needs of disabled people. Sue knew all about these organisations; she taught students about them.
But she didn’t fit the brief of either body. Full CHC funding was denied. Her husband, possibly one of the very few who could, analysed 150 pages of NHS guidelines and wrote a lengthy report, appealing. After 18 months they won – apparently a rare occurrence. Daytime care was funded. Sue, who the year before her illness had been awarded inspirational teacher of the year, tried to go back to work. She could still lecture, take tutorials, mark essays. Her university, Sheffield Hallam, nevertheless failed to take the opportunity to turn her tragedy into a triumph for disability and inclusion – as The Times has done for me. Too weak to fight this, she retired.
For the past six years she’s spent her life trying to survive a) urinary, chest and skin infections, the three horsemen of the spinal apocalypse, and b) a farcically dysfunctional system. She fell into the gap between medical and social care. She’s still living its reality – no joined-up thinking, multi-agency ineptitude, irrational wheelchair and equipment provision and inadequate medical resources.
“I never thought,” she told me, “that I would have to keep fighting for everything.”
In the past year, she has had six emergency hospital admissions. At Christmas the workforce was so stretched and the care so inadequate for her complex needs that she discharged herself. Her meals had been left to get cold; on occasion, she had not been washed. The CCG wouldn’t fund a carer to be on the ward. Sue still has unresolved medical issues, but she was so distressed by the experience she’s decided to remain at home next time something goes wrong. She’s fully aware of the implications.
One of the analysts of the health and care system, in other words, has proved its systemic failure. Her story is informed, harrowing and compelling. Sue and Chris, wearied but still cool-headed academics, have written reports showing clearly why NHS and social care must be integrated. They want change.
“Chronically ill people need a system designed around us,” she told me. “It isn’t.”
I’d like to see Sue Franklin give evidence to a Commons select committee to design that very thing. I’d like to see the secretary of state for health and social care, an enlarged title Jeremy Hunt sought, squirm. And I’d like to put on record that the integration of needs in Scotland is, in my experience, light years ahead.
Melanie Reid is tetraplegic after breaking her neck and back in a riding accident in April 2010