The Inaugural Ann McPherson Memorial lecture was given at the RCGP’s 2012 annual meeting by Professor Sir Al Aynsley-Green, who was the first Children’s Commissioner for England between 2005–2010. The lecture honours Dr Ann McPherson, an Oxford GP who died in 2011. Ann co-founded the Database of Individual Patient Experiences or ‘DIPEx’ with the aim of providing a resource that would enable patients, families, and health professionals to understand the experience of a variety of health conditions, by watching video clips of people talking about their experiences. Sir Al celebrated Dr McPherson as a tireless health campaigner and founder of websites www.healthtalkonline.org and www.teenagehealthfreak.org, which are dedicated to helping doctors and patients understand each other better.
Ann McPherson was an inspirational and relentless champion of the needs of young people. As well as being an outstanding role model for general practice, she was a lovely person who touched the lives of countless people. It is a real privilege for me to be invited to give this inaugural lecture in her memory.
What better way to remember her than through The Diary of a Teenage Health Freak? This is the title of her seminal books and website with Aidan Macfarlane that were years ahead of the field in recognising the needs of young people and having reliable answers to the questions they were reluctant or inhibited to ask. It piloted new ways to communicate with them in a format that caught their attention and in a language that appealed to them. She was also a founder member of the Association for Young People’s Health.
NEGATIVE STEREOTYPES
We have amazing and courageous young people today as exemplified by the Diana Princess of Wales Awards, the success of UK Youth Parliament in ‘taking over’ the House of Commons, and the previous government’s annual ‘Shine’ week in which over 1 million youngsters in over 4000 schools showed how they can contribute to sensible debate on matters that affect them, and contribute to society. Yet 54% of adults believe children behave like animals, 45% agree they are feral, 49% believe they are a danger to each other and to adults, 43% agree something has to be done to protect us from children, 35% feel the streets are infested with children, with most adults believing that 50% of crime is committed by children (in reality it is 12%).
These appalling data come from the Barnardo’s report of 2008, Breaking the Cycle Believe in Children,1 and expose a catastrophic breakdown in empathy for our young people. One important reason for this is the unprecedented demonisation of youngsters, especially adolescents, by irresponsible sections of the printed and broadcast media. The ultimate symptom of the deep malaise in our society is the unregulated deployment of the ‘Mosquito’ ultrasonic weapon that only young ears can hear designed to prevent youngsters gathering in shopping malls and street corners.
THE REALITY
Yet, what is it like to be a young person today? How many adults really know? In my work as England’s first Children’s Commissioner, I reached out to meet the most disadvantaged young people on their territory; on the streets, in prison, and secure mental health units, with physical and learning difficulties, and emotional ill health, and those experiencing social exclusion.
I conclude that there are truly amazing young people often overcoming major challenges in their young lives that are not of their making. The majority are loved, work hard, are law abiding, and contribute to society. However, powerful negative attitudes profoundly affect how they are regarded by society. Does this constrain our ability to speak effectively for them and their needs?
There could be reason for hope: the hugely successful Olympic and Paralympic Games in London have drawn public approval for the gifted young athletes who, through grit, determination, and commitment have striven for excellence in sport. Will the legacy be undermined and thereby squandered?
YOUNG PEOPLE: OUR FUTURE
‘An adolescent who is healthy is the best foundation for a healthy adult life, which will in turn influence future generations’ health.’2
Why should we take seriously the health and wellbeing needs of young people? Well, this is the time of life when long-term patterns of health behaviour are developing, with the needs of young people not being the same as the needs of children or of adults. Moreover, poor health at this stage represents a long-term cost for society since conditions arising in early life are likely to continue as major sources of morbidity and mortality in later life. Young people also have the right of access, just as any other age group, to good health services tailored to meet their needs.
How well are we doing with their health? There is a plethora of international data that show that all is far from well with the services provided for them and the outcomes they achieve.
The UK is bottom of the international league table with high poverty, poor health, high infant mortality and low birth weight, poor family and peer relationships, risky behaviour through alcohol, early sex, and teenage pregnancy, coupled with low expectations, low self-assessed wellbeing, and high rates of those Not in Employment, Education or Training (NEETs).3
Outcomes for long-term conditions including diabetes, epilepsy, asthma, disability, and renal rejection after transplant are all worse than other comparable economies.4
National data show an increase in the number of adolescents from 7 to 7.6 million over 20 years; one in five lives in lone-parent households and 17.5% live in workless households (the EU average is 10%). Increasing numbers of young people are in care (currently 64 000, with dismal outcomes) and there has been a 43% increase in emergency admissions to hospital.5
HEALTHCARE IMPLICATIONS
‘Policy makers have responded inadequately to the knowledge that health-related behaviours ... in adolescence have a sustained effect on the future health of young people.’6
One in 10 young people have a diagnosable mental health disorder, but less than 25% are able to access the services they need. Particularly vulnerable groups include young carers, children in care, those suffering bereavement, or disability and those who have been abused or with ‘hidden harm’: young people with drug, alcohol, or domestic violence in the home.
These data mean that in a typical student secondary school with a capacity of 1000 young people, at any one time, 100 students will be suffering significant mental illness; 50 will be seriously depressed; 10–20 will have an obsessive compulsive disorder; 5–10 girls will be affected by eating disorders; and 35–60 each year are bereaved of someone close.7 The challenges of alcohol misuse are enormous. Thus 30% of children live with an adult binge drinker, and 22% with a hazardous drinker; 175 000 young carers are affected by parental alcohol and/or substance misuse, yet there is little focus and action on this issue in the UK. In Canada, profound concern is expressed in provincial and federal health strategies over prenatal exposure to alcohol being the single most important preventable cause of brain damage, poor behaviour, and criminality, with up to 10% of infants being affected. 8
Why is there so little focus and action on this issue in the UK despite our epidemic of binge drinking in young women? What do young people need? In view of the enormity of emotional disorders in adolescence, the most important request to me as Children’s Commissioner was ‘someone to turn to’.
I have seen excellent schools that have first rate pastoral care arrangements including ‘drop-in centres’ staffed by trained counsellors, school nurses and, in some locations, GPs. Some young people, however, refuse to visit such centres and premises in school time for fear of stigmatisation, and so other drop-in centres such as the ‘Market Place’ in downtown Leeds provide outstanding service. Any young person attending, anonymously if they wish, can be sure of receiving reliable, non-judgemental information on any matter of concern to them.
What do young people want to know about? Professor Svenja Adolphs has performed a linguistic analysis of 2 million words in 100 000 emails sent to Diary of a Teenage Health Freak.9 It is hardly surprising that the most frequently asked questions relate to sex, pregnancy, and reproduction, sexual body parts, body changes, smoking, drugs and alcohol, weight and eating. The fact that so many youngsters are asking about these important matters could suggest that personal, social, health, and economic education in schools may not be giving them the answers they need.
PRIMARY CARE IMPLICATIONS
It should be of real concern to GPs that so many young people refuse to attend routine surgeries. It is also known that young people have the shortest consultation time of any age group with general dissatisfaction with access, attitude, location, and ability of GPs to relate to them.
To address these difficulties, the National Youth Agency with the Department of Health published in 2011 You’re Welcome — Quality Criteria for Young People Friendly Health Services.10 This policy statement sets out some key aspects for primary care services to consider (Box 1).
Box 1. Key aspects for primary care services to consider
Access, publicity, and information easily available to young people
Confidentiality and consent
Environment appropriate to the needs of young people
Staff training, skills, attitudes, values
Joined up working across sectors and professions
Monitoring and evaluation
Involvement of young people
Identifying health issues relevant to young people including sexual health and mental health
How many GPs know what young people think of their services? Who has asked them? Who has read and implemented You’re Welcome in your practices? Individual GP practices should also be asking the following:
Do you know how many young people there are in your practice?
How many are especially vulnerable?
How do you organise the transition to adult care?
Is your practice through its attitudes and personae young-people-friendly? How do you know?
Do you have a Young People’s reference group?
Are they involved in recruitment and practice policies?
Have you thought of alternative ways of providing services?
Do you meet proactively with every young person at least once?
Finally, do you speak out sufficiently for their needs?
All of these questions should be addressed if we are to improve the relationships between GPs and young people.
IMPLICATIONS FOR THE RCGP
What does all of this mean for the RCGP? In preparation for this lecture I learned of some excellent practice in different parts of the country where the views, needs, and participation of young people are being taken very seriously in the design of premises, training of staff, and delivery of services. However, this does not appear to be the norm. I also hear that few people outside of general practice know of any major impact that any College policy has had on services for children and young people.
So I offer the College and its officers some challenging questions:
Are the needs of children, especially young people, at the heart of the college? In my provocative view, they are not — they are an incidental ‘add-on’ to adult-centric thinking and policies.
Are you listening to what they have to say?
Are you working enough with other colleges and agencies to be effective advocates for the needs of our young?
Who speaks for and is responsible for children and young people in your key forums including Council?
Are you committed to improving training? My colleagues in Scandinavia and elsewhere express incredulity that there is no mandatory training programme for all GPs to understand how to relate to young people let alone be competent in managing their illnesses and needs.
Finally, what is the hard evidence for the RCGP being effective advocates for young people? What has the College done and achieved during the past 10 years to promote their best interests, and where is this information to be found?
British primary care is precious! You have a crucially important role to play in meeting the health needs of children and especially young people. Young people are our nation’s most precious resource. They are the living messages to a time we will not see and we cannot afford to continue to fail them. We know what they need and what has to be done.
Notes
Provenance
Freely submitted; not externally peer reviewed.
Footnotes
This text is based on the Inaugural Ann McPherson lecture at the Annual Congress of the Royal College of General Practitioners in Glasgow, 6 October 2012.
- © British Journal of General Practice 2013