At 16, Clover Stroud’s idyllic childhood was shattered when a riding accident left her mother severely brain-damaged. Now, 15 years on, funding for her care is being withdrawn. Can that be right?
By Clover Stroud
In the late morning of November 25 1991, my mother was riding on a disused airfield in Gloucestershire when her horse slipped and fell on a strip of concrete. She was wearing a riding hat but her head took the full impact. She was admitted to intensive care in Bristol in a deep coma, and was operated on that afternoon. Her prognosis was very bleak. The neurologist operated on Mum a second and third time over the next two months. We wish he had not.
Her reawakening, four months later, was very slow: there was never a movie moment when she opened her eyes and normality returned. Mum never came back, and she never looked like herself again either. Flaps of her skull were cut away to relieve the pressure in her brain and she had a big scar running from one ear to the other over the top of her shaved head. One of her eyes was partly shut, and has never reopened. So as she awakened she stared at us – her five children and my father – from her one good eye, looking frightened, angry, alone, because she, like us, was trying to work out what had happened, who she had become.
I am the youngest of five children. Mum had my oldest sister when she was in her 20s, and me in her 40s, and what she loved was chaotic family life. She had three children, my siblings Emma, Sophy and Tom, before getting divorced and moving to Oxford. It was the late 60s, and she and her best friend, Felicity, swapped babysitting and hotpants, wore their hair long and straight and ate a lot of cheesecake. She met my father, 11 years her junior, when he was still a student. They got married before he finished his finals and then my sister Nell and I were born.
We moved to Wiltshire when I was seven. Mum had an innate ability to create a very strong home, but would never have stressed over matching sheets and pillowcases. She filled the house with messy bunches of wild flowers and a lot of people. Everyone fell for her, because she made every day into something magic without seeming to try. Of course there must have been arguments, because that is the stuffing of family life, but even in the generically stormy teenage years, I didn’t fight with her. If I am making my early life sound romantic, that is because it was. When I feel anger or despair about what has happened to her, I remember that I was very privileged to have had her as a mother for as long as I did.
I was 16 when the accident happened and in the first year of my A-levels. Nell was on her year off before university. Life changed absolutely in the space of one morning. I can’t remember much about the time immediately after the accident, about the weeks we spent beside her body in intensive care, but someone told me that shock and trauma can make you forget a lot of things. But when she did slowly wake up, she was totally changed and entirely mentally disabled.
We all talked about what would happen when she got better. Then we imagined we would be unlocked from this awful parallel world of brain-damage units and rehabilitation centres, incontinence pads and a dribbling, confused, damaged woman who in some strange, shadowy way resembled the woman she was, but in most ways did not.
Writing this, 15 years later and Mum’s condition unchanged – if anything much worse – it seems laughable, pathetically optimistic, that we estimated her full recovery might, at the very worst, take two years. Denial, I suppose, is what we were in. And survival mode, too. When you are looking at the reality of long-term, chronic brain damage, you will do anything you can to survive.
I am now 31 and I have two young children of my own. I look back on the time before her accident as an entirely different life. Part of this is the inevitable nostalgia of an adult reviewing childhood, but what happened to Mum did profoundly change my life and my sensibilities. It is not true that every cloud has a silver lining, because nothing good, nothing positive, has come from what happened to her. It is just a nightmare, for her, for us all, that goes on and on.
Five months after the initial operations, the NHS declared that Mum, doubly incontinent, confused, disfigured, deeply brain-damaged forever, could be sent home to be looked after by Nell and me. She was awake, so they saw her surgery as a success.
A year after the accident, my sister Emma took Mum to the surgeon who had operated on her, to show him the condition she had been left in. He refused to see her. If this was saving a life at any cost, then that cost was too high.
Mum came back to live at home with a nurse. We changed her nappies, and tried to pretend that life was OK, even though the house smelt of hospitals and pee and an unnamed damage that we still couldn’t really contemplate. I did my A-levels, and Nell went to university. None of us wanted to be at home, and then a sort of late teenage rebellion set in, because it was the early 1990s and the rave scene was huge. Dancing all night in a muddy field was the most effective way Nell and I found to block out the reality of the Gothic hospital that our home had become.
But after two years everyone conceded that Mum was too sick, too deranged and damaged to live at home. So my dad sold our house, bought himself a houseboat in London and spent the change on a small terraced house in Oxford, where Nell and I both had places at university. Mum, needing skilled, full-time nursing, was awarded full NHS funding, and moved into a rehabilitation centre.
Seven years ago, she moved again, to an EMI – elderly and mentally infirm – unit in Norfolk. All of us have visited her as much as we can over the past decade. After I finished university I got married very quickly and had two children, now three and six. I got divorced almost as rapidly, and now live in Oxford in the same house that my dad bought, which Mum partly owns.
Visiting Mum is difficult. She cannot speak, write or communicate. She is epileptic as a result of the accident and doubly incontinent. She is disfigured, her head swollen, and now both her eyes are half-closed. She had to have all her teeth removed last year, she dribbles a lot, her tongue lolls and she is on a largely pureed diet. When she eats, she chokes, her tongue out. She does not recognise me, except for a moaning sound of sadness that she sometimes makes when I come into her room. I find it quite hard to remember the person that she was, the sound of her voice, the things we laughed about. She used to love babies, but when I first arrived with my son, she sat on her hands and wouldn’t look at me or touch him. I don’t know who she is.
Mum would have hated the idea of what she has become and the life it has created. There is no doubt that death would have been preferable. It would have been dignified, and you couldn’t construct a more sad living present for a person than the one that Mum lives in. Eight years ago, when she was a little more mobile, she got hold of some medication and took an overdose. She went into a coma, again, and in hospital her stomach was pumped. For what? To perpetuate this living death? When she came round again, her brain damage seemed to be more profound, and she has deteriorated even more since then.
Knowing that she was getting the nursing she needed was the one consolation after her accident, but recently that has changed. Early last year, Wiltshire Primary Care Trust (PCT), part of the NHS that had granted Mum full funding 15 years ago due to the severity of her injuries, informed me that within 28 days they would cease her funding. They claimed she no longer fulfilled the Continuing Health Care criteria to qualify for funding. No social worker has been actively involved with Mum in the past decade, even through her suicide attempt, and later an allegation of abuse at the rehabilitation centre involving a police inquiry. So the first time in many years that a social worker or member of the PCT had come to see her was to assess her for the removal of her funding. When we appealed against this decision, she was visited again by a PCT nurse who didn’t meet her, as she had been rushed into hospital that night, but he looked through her notes, talked to one of her nurses and me, and then filled in a form in which he stated that her needs were no longer “intense, unpredictable or complex”, three of the key criteria to qualify her for ongoing funding. After that the PCT relinquished responsibility for her without any formal discharge of responsibility. She was just dumped, even though social services never accepted responsibility for Mum.
Events became even more critical in late November, as we were told her nursing home was closing in early December. I found another home in Wiltshire, and stopped work, spending a month on the telephone with the PCT, pleading with them to reinstate her funding, pending the result of the appeal in January 2007, so that I could move her to a new home. Their refusal was categorical and felt deeply inhumane, as within days she would be homeless. I was advised they were acting unlawfully by ceasing responsibility for her while the appeal was in process, but I was also powerless in the face of the bureaucracy of the NHS. So they were acting unlawfully, but what could I do? Call the police?
When the PCT nurse told me that he would be going on leave for a week, and with her home closing within three days, I realised I would have to take dramatic, practical action. On December 1, I left my children with a friend in Oxford, and my sister Emma and I drove Mum to the offices of the PCT in Wiltshire, where I was prepared to leave her, because I did not have an option. The sight of Mum – damaged, frightened, vulnerable – forced them to concede, and Alison Knowles, Director of Performance Improvement and Commissioning, agreed that the PCT and social services should jointly pick up her funding until the result of the appeal in January.
The appeal about Mum’s funding is next week, and fighting her case has taken over my life. I have not worked since last November. I am a single parent supporting two children, and because I live in the house partly owned by Mum, I am facing losing my home. I know that this is a familiar story to a lot of people. Care for elderly or sick relatives cripples families already buckling under the emotional consequences of that sickness. Longevity is a family trait and Mum may well live for another 25 years. I don’t know how to shoulder such long-term financial responsibility, as her fees are more than £26,000 a year.
My story is not an isolated case. This is the way the NHS works today.
Care and the NHS
The 1946 NHS Act and 1948 National Assistance Act established two parallel systems of care: the NHS, which provides care free at the point of delivery, and local authority-funded social care, which is means-tested. Successive governments have exploited this division to cut costs and reduce NHS provision, redefining health care as social care. As long-stay NHS hospitals have been closed, funding has been moved from the NHS and local authorities to for-profit corporations.
Today the NHS in England has fewer than 190,000 available beds (most for acute hospital care); in 1948 there were 450,000 (which included long-stay beds). The mainly for-profit sector, meanwhile, has been subsidised to provide in excess of 360,000 long-stay beds. Today the NHS is responsible for fully funding fewer than 21,000 people with long-term care needs – most people in long-stay beds must pay until their assets are exhausted.
The 1990 NHS and Community Care Act was designed to reduce funding and restrict eligibility for NHS-funded care further through the formal assessments of need. In 1997, the incoming Labour government established a royal commission on long-term care, but rejected the core recommendation that personal care be free. Since then, the health ombudsman, health select committee and the Law Society have published reports drawing attention to the unfairnesses and confusion in government policy and the distress caused to thousands, yet nothing has been done. Now the courts have stepped in. The judgments highlight that government policy and procedures are being applied unlawfully, and that people whose primary need is for health care should receive fully funded care.
More than 4,000 complaints have been received by the health ombudsman – complaints can only be made once all avenues have been exhausted.
· Allyson Pollock – author of NHS plc: the Privatisation of Our Health Care (Verso)
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