Personal views: Who cares
Authors: Colin Douglas
Journal: BMJ (1998)

Four years ago our daughter Mary was diagnosed as having schizophrenia. The illness emerged from a difficult adolescence to pitch our family into turmoil from which it is painfully and slowly recovering. 

Mary was born by caesarean section at 33 weeks after my wife had severe toxaemia. The twins arrived 18 months later, and I became a general practitioner in semirural north Staffordshire. Mary’s ambition was to ride ponies and marry a farmer. She settled into a normal school with slight developmental delay. She struggled academically, was clumsy in action and speech, and became increasingly temperamental. Psychologists diagnosed minimal birth injury, although she was capable of attending a normal school. But she was unhappy and left at 16 to attend a local learning disability farm project. 

Isolated from her friends, Mary began to mutter under her breath, she had mood swings, and home life became fraught. She attempted suicide by frenziedly pushing paper into an electric socket. Bewildered, we arranged domiciliary assessment and were astonished when the psychiatrist diagnosed schizophrenia. She was nearly 17. 

Family life revolved round Mary’s five weekly cycle of psychosis and weekly outpatient trips. Ann stopped district nursing to devote her time to Mary—and her behaviour of walking incessantly, visiting grandma, shopping, swimming, baking, haunting Ann with her stock phrase: “What shall we do now?” Friends could not visit, our sons were ignored, and work became my retreat. At home I would disappear to the shed or the study as Mary became increasingly paranoid towards me and her ex-schoolfriends. At night knives were hidden and doors locked as she would roam around the house agitated and unable to sleep. 

We coped for a year without day support or an appropriate adolescent unit until Mary’s paranoia suddenly extended to Ann. This necessitated urgent admission to an adult hospital ward. Forsaking our daughter to this nightmare setting fuelled our guilt but let us reflect and begin some family life again. For six months she gradually deteriorated, heavily drugged, and too ill to return home. 

Her decline led to transfer to the local Victorian asylum—2000 residents in its heyday but now 300. She was admitted to an eight bed dormitory, without curtains round the beds or carpets. At the same time dormitories for boys in the local detention centre were being upgraded to individual rooms. Mary’s only sin was being ill. An enduring memory haunted Ann and me as we went off to sleep—Mary’s empty bedroom next door reminded us that she was condemned to sleep in a comfortless, Dickensian dormitory. 

Mary’s rehabilitation ward—17 clients aged 20 to 40—felt like an oasis in a desert of elderly residents wandering round cadging cigarettes, swearing, lost in their own worlds. Within a few days an old man pushed Mary into some bushes to kiss her, and a younger, potentially violent patient from the hospital’s challenging unit warned Ann to keep Mary away. 

Now aged 18, Mary was incapable of normal thought. She was incoherent, drooling, and grossly overweight. She did nothing, went nowhere, and managed only an hour at home over Christmas because of paranoia towards me. We despaired for her future. 

One strength about being at rock bottom is that you cannot sink lower. Supported by her excellent consultant we began to fight back. Clozapine was started and proved crucial to controlling the psychosis. Multiagency assessment catalogued serious unmet needs and enabled us to challenge the system. I complained to everyone—local health services, the community health council, MPs, colleagues. Our MP assured us with the latest glossy booklet from the Department of Health. The reality was dreadful and we grieved through guilt, disbelief, and anger. 


What was Mary rehabilitating to? Our health authority denied responsibility. Was it satisfied with its purchased rehabilitation for an 18 year old? It simply advised us to await the realisation of its £20m business plan, which would close the old bin and open a new rehabilitation unit by May 1997. 


“One strength about being at rock bottom is that you cannot sink lower”



After six fruitless months locally we complained to the chief executive of the West Midlands Regional Health Authority, Brian Edwards. The effect of this one letter was remarkable. The person responsible for mental health in the region visited us to hear our concerns. At last someone with mental health skills and compassion was listening. This was followed rapidly by a visit from representatives from the regional health authority to see the local facilities. 

The result was that Mary’s ward and two other long stay wards were divided up, allowing some privacy. There has, however, been a continued failure to agree the closure of the hospital. When we visited excellent rehabilitation projects in Birmingham we realised what we lacked locally. Our determination and the pressure from the region persuaded the local purchasers to fund four full time registered mental nurses for two years and commission with social services an innovative community rehabilitation 17 place project. 

Eight months ago Mary moved into her “own flat.” She buys and cooks her own food, looks after her room, plays her own music, visits a community activities resource most days, and loves the local market. Her mental health is a revelation to those who remember her from the hospital and we feel proud of her again. 

What chance has an average carer’s complaint compared with people with professional knowledge? Brian Edwards told a House of Commons select committee: “Complaints are jewels to be treasured. They tell us how to do things better next time. If we really believe in quality and have a passion for getting better health services we should search them out vigorously.” 

Our experiences reveal serious inadequacies in the way that the NHS deals with young people at such a formative phase. It is an indictment of the NHS that 13% of its budget provides the standard of heath care given to Mary.