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Let young people have their say

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Imelda Charles-Edwards, MA, RSCN, RN, RNT, DipN, DipEd.

Education Officer, Children's Nursing, English National Board, London

A campaign called 'Have your say', directed at young people, their parents, guardians and professionals, was launched in London last month. The Regional Standing Nursing Conference Group for Children includes children's nurses from hospital and community services all over London.

A campaign called 'Have your say', directed at young people, their parents, guardians and professionals, was launched in London last month. The Regional Standing Nursing Conference Group for Children includes children's nurses from hospital and community services all over London.

The campaign calls for greater implementation of the right for young people to participate in health-care decisions. In order to be empowered young people also need access to information and there may be times when they wish to talk to a professional by themselves.

There are occasions when young people may want to see a health professional alone. This may be a challenging situation for some parents and something that young people find difficult to initiate.

The campaign comprises four posters. These come with back-up pocket-size leaflets in recognition of the worries the message may cause and the sensitive issues involved. The leaflets outline the rationale for the campaign and tips for professionals, parents and young people on how to implement it.

The campaign is funded by the London Regional Office and the posters and information leaflets will be distributed to health centres, school nurses and hospitals throughout London.

The campaign is designed to help young people such as Sarah. She is 14 years old and has diabetes. She is fed up with health professionals who regularly ignore her and talk instead to her mother. Sarah would like to increase the amount of responsibility she takes for her own health. She also wants to ask questions about the long-term effects of diabetes and about having a baby when she is older, but finds it difficult to ask these in front of her mother.

Difficult issues
Campaigns such as 'Have your say' tend to prompt adverse publicity. While the issues involved are actually very broad, media coverage often trivialises the message. For example, the Mail on Sunday (8 July 2001) reported this campaign as encouraging 10-year-olds to access information about birth control. This ignores the judgement in the Gillick case (Gillick v West Norfolk and Wisbech HA, 1985), which concerned access to birth control, that ruled that those under 16 years old can access information and treatment if they have the necessary understanding and maturity.

The 'Have your say' campaign fully recognises the wishes of parents to be involved while supporting the view that adolescents also need to learn how to take responsibility for themselves.

There is no evidence that young people generally want to exclude their parents from decision-making (Alderson and Montgomery, 1996). This campaign is not about exclusion of parents but about the inclusion of young people.

Legal rights of the child
The UK, in common with all governments except Somalia and the USA, has signed the United Nations Convention on the Rights of the Child (UN, 1989). Article 12 of the convention states that children have a right to express their view about matters affecting them and that their view should be given due weight in accordance with their age and maturity. Article 13 states that children should have the right to freedom of expression and the freedom to seek, receive and impart information.

The most important legal foundation in the UK for acknowledging the competence of young people to consent is the Gillick case, in which the term 'Gillick competence' was born. Gillick competence simply requires a young person to have sufficient understanding of the nature and consequences of a particular decision.

Positive and negative rights
Adolescence is a time of transition into adult life. This transition can also be described as a move from dependence on 'positive rights' in childhood to the opportunity to claim 'negative rights' in adult life.

Positive rights require another to do something for you to fulfil those rights. 'In meeting positive rights, adults generally can do what they think will be in a child's best interests' (Charles-Edwards, 2001). Decisions made in this way, however, have little to do with real freedom for the young person involved and are likely to receive few challenges.

Negative rights, in contrast, are about young people being free to determine their own future, free from interference. Negative rights allow a patient to give or refuse consent after hearing the risks and benefits of a proposed treatment, for example.

Giving young people negative rights is hard for adult society to risk as it naturally wishes to protect young people.

The campaign 'Have your say' is not about letting young people do whatever they please. It is about providing information to encourage them to develop the understanding and responsibility to use negative rights as they mature. Without information young people cannot participate and this information may need to be gained without their parents' presence.

Parents, professionals and young people may need sensitive help to accept the ethical importance of respecting young people's autonomy and the social policy benefits of encouraging responsible citizenship.

- For more information on the 'Have your say' campaign call Imelda Charles-Edwards on 020-7391 6302/6240

Legal reference
Gillick v West Norfolk and Wisbech HA 1985 All ER 402, 421.

Alderson, P. (1993)Children's Consent to Surgery. Buckingham: Open University Press.

Alderson, P., Montgomery, J. (1996)Health Care Choices: Making decisions with children. London: Institute for Public Policy Research.

British Medical Association. (2001)Consent, Rights and Choices in Health Care for Children and Young People. London: BMA.

Charles-Edwards, I. (2001)Children's nursing and advocacy: are we in a muddle? Paediatric Nursing 13: 2, 12-16.

United Nations. (1989)United Nation Convention on the Rights of the Child. Geneva: UN.

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