I spend my life in and out of hospitals with my children. My youngest is mentally handicapped and my eldest suffers very mild cerebral palsy. But I will never become accustomed to being by the bedside, 24-hours a day. In the beginning there's fear and anguish for your child, tinged with the relief of not having to do homework, supper, bath and bed. But then there's my child who suddenly seems very small, frightened and in pain. And then there's the boredom. I can't drink coffee on the ward and he doesn't want me to leave him. I can't live on disgusting sandwiches from a vending machine and the cafeteria is closed for refurbishment. I spend the night in a chair next to his bed or on the floor on a half- mattress. And then, of course, there's no sleep. It's never dark or quiet. I listen to the crying of children who have nobody with them and who must wait for a nurse with time for a cuddle.
All over Britain there will be children who spend this Christmas in hospital. Most will have family and friends staying, but many will spend days and nights without the comfort and love of a parent or a carer. It can't be good for children to be left battling with an experience that most adults shudder at. Who is letting who down? Are parents failing their children or is the Health Service so bogged down in policy that it's forgotten its human face?
Mothers who could stay but don't are often consumed by fear, anxiety and feelings of incompetence in the face of nursing skills. For their children there is a cycle of protest and despair that finally gives way to withdrawal.
"People develop institutional defences in hospital," says Juliet Hopkins, a child psychotherapist at the Tavistock Clinic in London. "What you don't want to know about you don't see. The sustained grief of any particular child is not observed if it's too painful. New people on the ward or visiting mothers witness the enormity of it but become hard boiled after a while. A lot of parents underestimate their own capacity. If they knew how important they are in the healing process, how much they can give, they might move heaven and earth to be there".
Can anything make a difference? A child who is well prepared for being alone will suffer separation less traumatically. An under-five, says Juliet Hopkins, experiences the unpleasant things that happen in hospital as attacks: "Young children without their parents suffer a basic loss of trust. Suddenly they're no longer protected from a trauma. Fear and anger take over and, if they've been in hospital long enough, they're emotionally frozen when they get home. You can't tell how much they've suffered until they start to thaw out."
Sister Madeleine Mitchell at the Royal Hospital for Sick Children in Edinburgh, endorses this view, but she says there are often minuses associated with parents who stay. A child may refuse to co-operate unless the parent is constantly there. The parent feels guilty and often doesn't know when to go away. The system doesn't always work as well as the policy, she says.
The 1996 Children's Charter recommended universal parental access to paediatric wards. But there are gaps between policy and practice and much depends on individual hospitals. Although many are defensive about such gaps,most admit they are inevitable. Most encourage parents to stay and many have consistently improved their facilities. Maggie Rogers, Lead Nurse for Childrens' Services for Barts, Queen Elizabeth and The Royal London hospitals says "Many senior managers just don't understand the needs of children and so adopt a very hands-off approach. There need to be changes, both medical and management, at senior level. We need to create an ethos of family-centred care."
But not all parents can stay. Other family commitments are a powerful force in keeping parents away. Working mothers are also a contributory factor. "If a parent isn't there," says Maggie Rogers, " We will provide someone who can help alleviate some of the psychological damage. Most hospitals are good at long term family accommodation but facilities for parents to sleep and wash and eat on the wards are not good. We should be able to provide comfortable facilities near the child who is only in for a short period."
At Great Ormond Street, information about accommodation and facilities is sent in advance of a child's arrival. One parent is expected to stay. The Hospital's Family Accommodation Manager, Michelle David, says a child in hospital creates enormous stress on a family.The feelings left by such an experience, she says, can last the whole of the child's life.
There are also cultural differences in attitudes to care. At the Queen Elizabeth in east London, 70 per cent of patients are of ethnic origin. It's in a long tradition for Asian mothers to stay with their children, while travelling families will often not even cross the threshold of a hospital because they loathe institutions.
Consultant paediatrician Sheila McKenzie says if you refused an Afro- Caribbean mother a place to sleep,"you'd get a smack in the face".Reuse content