Despite making up a quarter of the population, children have historically had to fight for recognition within the NHS.
The tendency to treat them as mini-adults has been illustrated by how adolescents experience a spell in hospital where teenagers are often forced to share wards with people 60 years their senior, or in pharmacology where paediatricians often have no choice but to use drugs licensed only for adults. And, unlike the us, there is no separate specialism of adolescent medicine.
The children’s commissioner Professor Al Aynsley-Green, formerly director of research and a practising children’s physician at Great Ormond Street Hospital, is passionate about the need for change. “there is an astonishing lack of understanding in the minds of adult centric people in the nhs over why [children’s and young people’s] health services are not just scaled-down adult services,” he says.
The Teenage Cancer Trust, which has funded a series of adolescent units attached to NHS hospitals, agrees: “in the NHS, a 15-year-old is treated as a child and could be treated alongside one-year-olds, while if you are 16 you are treated as an adult and could be on a ward with 80-year-olds,” a spokesperson for the charity explains.
She says that although teenagers tend to get specific types of cancer that you don’t tend to see in other main groups, access to specialist care is limited. “we still have a battle with the nhs when it comes to building teenage units. We have to fight hard and make our case.”
Dr Harvey Marcovitch, spokesperson for the Royal College of Paediatricians and Child Health, says it has been NHS policy since the 1980s that children in hospital should be treated apart from adults, either on a children’s ward or in a separate area, but that this has not always been easy to implement on the ground.
“One of the problems is that about half of the children are not admitted under the care of a paediatrician, but under a surgeon, such as ear, nose and throat, or an eye specialist,” Dr Marcovitch explains. “they may not have access to a proper children’s ward and be forced to compromise.”
However, there are signs that the tide is turning. The National Service Framework for Children, published in 2004, marked a world first in setting comprehensive standards for paediatric care.
Among the standards is a requirement for all young people to have access to age-appropriate services to meet their needs as they move into adulthood.
In addition, the NSF states that all children should receive high quality hospital care delivered in appropriate settings, and that children should be involved in decisions about medicines. All hospitals are also expected to appoint a children’s champion to sit on their management boards and ensure the minimum standards are met.
More recently, the national institute for health and clinical excellence and the national collaborating centre for cancer has launched guidance to standardise services for children and young people with cancer. It recommends that all patients under the age of 19 should be treated in age-appropriate facilities and calls for more units like those built by the Teenage Cancer Trust.
Hard on its heels came the publication of a british national formulary for children, an encyclopaedia of drugs written by child health experts. Prior to its arrival, prescribers had to rely on their best judgement, often based on adult data, when deciding what drugs and doses to give to children.
Dr Marcovitch describes this as a “huge advance” given that between half and a third of prescriptions for children are for drugs not licensed for use in children – a figure which rises to 80% for newborns. “if a drug is used ‘off licence’, a drug company will not give any advice on what is the correct dose for a three-year-old, for example,” he says.
Better still, the recent approval of a new regulation by the european parliament will see the introduction of incentives to drug companies to research and develop medicines specifically for children – and penalties for those who do not.
“Although there are still some ‘orphan’ groups, we think children really are moving up the agenda now,” says dr marcovitch. “you don’t have to fight so hard to be heard.”
New kids’ hospital is “wicked”
The £60m Evelina Children’s Hospital at Guy’s and St. Thomas’ NHS Foundation Trust, which opened at the end of october, is the first new children’s hospital to be built in london for more than 100 years.
Children and young people have been heavily involved in shaping its environment and architecture from the earliest stages of design.
Steve Mcguire, director of Capital Estates and Facilities Management, says his team have worked with children, parents and their carers through the evelina children’s hospital board and the teenage patient support group, pride of guys.
“We’ve encouraged them to ‘tell their stories’ about their time in hospital,” Mcguire says. “this has helped us plan a ground-breaking training and induction programme to support the 900 staff who will be working in the new hospital.”
The hospital, which pulls the trust’s inpatient services for children under one roof for the first time, includes 140 inpatient beds, 20 of which are intensive care beds for the most seriously ill.
Children have also had a hand in designing the hospital’s “furniture”, including special sofas with televisions fitted into the armrests and a 17ft high helter skelter for children to enjoy while they wait for their appointment.
“I think it’s wicked,” says children’s board member Eric Li. “Especially the rockets and the helter skelter.”
‹ There are seven children’s hospitals in England, three in Scotland and one in Northern Ireland. Northern ireland has the highest provision of children’s units per child. In england, the north west has the greatest number of children’s beds.
‹ About 40% of all children’s inpatient episodes are for care by surgical specialities other than paediatrics.
‹ Children account of an estimated 3.5 million of the 14 million A&E attendances in england each year, mostly for sprains, lumps, bumps and fractures.
‹ The incidence of childhood cancers has not changed very much over the past 40 years and account for 20% of deaths in children aged between one and 14.