Britain’s great betrayal: some inconvenient truths about children’s health services

Children, young people and their health in the UK are experiencing unprecedented challenges driven by a precarious financial crisis, swingeing cuts to public services, and political turmoil caused by zealous ideological dogma.

This paper exposes the betrayal of children by successive governments and politicians and by the organisations that should speak for their needs, and documents important and inconvenient truths.

How well are we doing for children and young people and their health services?

Children, generally, are healthy and few die. The culture of services has been transformed since the 1970s by parents having unlimited access to their hospitalised sick children and being involved in making decisions in their care.

Major scientific advances have transformed the understanding of diseases, their diagnosis and treatment, immunisation having diminished the toll of polio, pertussis, rubella and meningitis.

Resources and facilities have improved, including wards purpose-designed for adolescents.

The importance of the voice of children and young people has been realised based on Article 12 of the UN Convention on the Rights of the Child:

“Children have the right to say what theythink should happen when adults aremaking decisions that affect them, and tohave their opinions taken into account.”

No one today would initiate a procedure or a treatment without fully involving the child, depending on its level of understanding. Even young children receive patient-controlled analgesia after surgery, where, within tight limits, they adjust the rate of medication given to provide pain relief.

Some inconvenient truths

Despite these welcome developments many outcomes for our children fall below the benchmarks of other developed nations.

“Children have the right to say what they think should happen when adults are making decisions that affect them, and to have their opinions taken into account.”

Thus, the UK is bottom of the international league table for the wellbeing of children with:

• • High poverty
• • Poor health
• • Poor family and peer relationships
• • Risky behaviour – alcohol misuse, early sex & teen pregnancy
• • Low expectations and high rate of young people Not in Employment, Education or Training (NEETS)
• • Low self-assessed well being

There is poor emotional and mental health with: 1 in 10 children having a diagnosable mental health disorder. Particularly vulnerable groups being

• • Young carers
• • Children in Care
• • Those who are bereaved
• • Disability
• • Children who have been abused
• • Hidden harm - young people with drug, alcohol or domestic violence in the home

Less than 25 per cent are able to access the services they need.

The number of adolescents has increased from 7 to 7.6 million between 1995 and 2009 with 1 in 5 living in lone parent households, 17.5 per cent in workless households, an increase in the number in care (now standing at 64,000) with dismal outcomes, and a 43 per cent increase in emergency admissions to hospital between 1996/7 and 2009/10.  

Recent audits of care for children with epilepsy and diabetes by the Royal College of Paediatrics and Child Health show that improvements have occurred, but this is patchy with much to be done. Other reports have documented inadequacies in neonatal care, aspects of cancer, disability, and long-term conditions.

They all show how poorly the UK performs internationally, with worrying increases in inadequate services and outcomes, and patchy specialist care. The data are there for all to see.

The politics of children’s health services

In 2001, Sir Ian Kennedy published his searing Inquiry into the scandal of children’s cardiac surgery in Bristol where many infants died or were damaged after such surgery. He exposed nationwide care for children being subordinated to the demands of adults; lack of understanding in decision and policy makers of what is different about children’s services; the view that children are healthy and services are OK, and complacency — the ability to admit a sick child being seen as a major success.  

But he also exposed that children were not mainstreamed in government policy – they were an ‘add-on’; key priorities in the NHS were not relevant, with a failure of leadership and of political advocacy by professional organisations. These deficits are chilling in the light of children’s lack of voice. They cannot vote. They must rely on informed and effective adults to speak for them.

Ten years later, Kennedy re-visited children’s health services and found patches of excellence, but cultural barriers in government and in services perpetuated the isolation of policy, lack of responsibility, no identified funding, poor use of data, the NHS not working with others and a lack of financial investment.

The Kennedy Inquiry triggered the then Secretary of State, Alan Milburn, to launch ‘a new crusade to improve the nation’s children’s health’. He appointed me to be a new National Clinical Director for Children to be responsible for defining standards of care in a National Service Framework with the promise of ring-fenced money, imperatives and hard targets to meet. The rhetoric created a massive expectation in the children’s health sector that at last there would be a transformation in the low standing of those services.

After 4 years of work, expense and involving over 300 experts, coupled with rigorous evidence as to what works and extensive consultation not least with children and young people themselves, the National Service Framework was ready for publication. It received international acclaim in 2004 as an outstanding process for defining standards for children’s health care.

But, unexpectedly, children were betrayed by politicians with the defined ‘must do’s’ turning to nothing more than ‘aspiration’ over a ten years period. The lack of political will to provide imperatives and resources created fury in the sector with a persisting shadow of distrust.  A unique opportunity at a time of financial abundance to give children the priority they deserve was lost evermore.

• Why did this happen?
• • The ‘churn’ of ministerial appointments (five Ministers and three Secretaries of State in 5 years)
• • Failure to get continued focus for children’s health from successive Secretaries of State
• • Overtaken by political fashion – with a new government policy ‘Shifting the balance of power’ devolving NHS priorities to the local level and removing central prescription of standards
• • Political indifference for children
• • Failure of Parliament to hold the Department of Health to account
• • Lack of media pressure
• • Muted voice of the sector and no concerted advocacy

In 2008, the New Labour Government launched its Children’s Plan incorporating five outcomes – Be Healthy, Stay Safe, Enjoy and Achieve, Make a positive contribution and Achieve economic well being.

As with the National Service Framework, this received international acclaim for the comprehensive way in which children and their services were regarded, with all departments of state being held to account for work that related to the young.

In 2010, within minutes of the Coalition Government being announced, every image of the ‘Every Child Matters’ policy was removed in what had been the Department for Children, Schools and Families, now re-named the Department for Education, the former Plan then being systematically dismantled. Allegedly, officials were given a list of prohibited words that reflected previous policy.

Here’s what we now face:

• • The disastrous financial circumstance of the nation
• • The need to ‘balance the books’ through austerity and cuts to public services
• • Need for change in the NHS driven by the challenges of care for the elderly
• • Increasing weakness of the voice for children’s health in the Department of Health and its invisibility in the Department for Education
• • New Secretary of State for Health appointed to ‘de-toxify’ the legacy of his predecessor and make the Conservative party electable within two years.
• • A Secretary of State for education focused solely on improving education outcomes
• • The NHS re-organisation continues apace with cuts to children’s services coupled with hospital services ‘on the edge’ as described by the Royal College of Physicians.

In 2010, the Department of Health White Paper Team published ‘Achieving Equity and Excellence for Children’, timed to coincide with and neutralise Sir Ian Kennedy’s withering report on the lack of progress in improving children’s services. The document offered only platitudes with no commitment to implement change let alone deliver funding.

It has now published the report of the Children and Young People’s Outcomes Forum, the product, as for the National Service Framework, of hard work by outstanding contributors. It defines principles that have the potential to change the focus of children’s health care to accountability through defined outcomes:

• • Putting children, young people and families at the heart of what happens;
• • acting early and intervening at the right time;
• • integration and partnership;
• • safe and sustainable services;
• • workforce, education, and training;
• • knowledge and evidence;
• • leadership,
• • accountability,  
• • incentives.

The skeptic experiences déjà vu, seeing philosophies and words identical to those of the National Service Framework, and believes that the publication is nothing more than a smoke screen, the report destined to gather dust on library shelves. Skepticism and cynicism are reinforced by the absence of any commitment to fund and implement any impactful outcomes strategy.

Where is effective advocacy for children and their services?

My commentary on the likely destructive impact of the health service reforms on children’s health in Private Eye (29 October 2010) led to an invitation to work with a TV company to produce programmes on the impact of these reforms on children’s services. It proved impossible to recruit any senior child health practitioner from any major institution contacted to agree to participate on camera. Why was the sector so silent?

Fear of upsetting relationships with government; concern for ‘my job’ (by being seen to be a ‘whistle-blower’), and ‘our funding’; pressure from government; jockeying for influence; personal territories and ambition coupled with ‘Batten down the hatches and get on with the day job’ all contribute. The absence of courageous leadership and effective advocacy compound the difficulties.

However, some 300 colleagues signed a letter to The Times newspaper on the day that the Health and Social Care Bill was debated in the House of Lords in February 2012 stating that the Bill would be bad for child health. Few ‘grandees’ in the professions signed, the majority being young doctors, nurses and colleagues in allied health professions. 

How do we get effective political influence?

It is difficult, depending on building relationships and trust with government, quiet behind-the-scenes engagement and offering constructive suggestions.

Practitioners face a moral conundrum — when to raise public challenge? By so doing, they face the real risk of marginalisation by politicians. So, when should they speak out, and does always working with government achieve the desired outcome? These are difficult questions to resolve.

‘Never let a good crisis go to waste!’ was the mantra from Rahm Emanuel, President Obama’s former Chief of Staff. Parent power can have real impact. We need to remember that Bristol heart scandal was exposed by angry parents — and the media who reported their concerns. The decline of local media, and the curious performance of the BBC nationally in reporting on the NHS are matters of real concern, for patient power requires a healthy media keeping the public informed.

So, what is needed now?

• a)    Information and evidence
• Effective interdisciplinary children’s health services research, combined into comprehensive regular State of the Nation’s Children’s Health reports that monitor the impact of current turmoil. We need hard evidence of deficiencies, intelligence on potential disasters and scandals, and the development of a national network of Children’s Champions under the aegis of the Medical Royal Colleges. As Ingrid Wolfe argued recently on OurKingdom, doctors must bear witness.
• b)    Commissioning of services
• This should be driven by need and ‘journey of care’ and not profit, focussing on first contact and chronic conditions care, underpinned by the United Nations Convention on the Rights of the Child, informed by the views of children and parents and described by protocols and worked examples. A local and national accountability framework is needed to answer the question “Who is responsible?”
• c)    Understanding politics
• Practitioners are largely unaware of the mind-set and drivers of political life. Jeremy Paxman’s book ‘The Political Animal’ is essential reading for those would-be advocates in the way he exposes the motivation and life journey of the politician.

The ‘science’ of effective political advocacy is poorly developed in children’s services. It comprises:

1. Clarity on the cause being advocated for
2. Definition of the facts to support the cause
3. The argument
4. Brigading support
5. Knowing who to target
6. Using the media
7. Follow through

My report ‘Out of the Shadows’ when Children’s Commissioner that documented young people’s experiences of being admitted inappropriately to adult mental health wards shows how this approach can be effective. It forced government to acknowledge the problem and commit to expand adolescent in-patient facilities. In 2005-6, before the report, 29,306 adult bed-days were occupied by adolescents; by 2010-11, this had fallen to 5,166.

What is needed from politicians?

1. Political ideology that treats children as a vital priority and resource and as citizens in their own right
2. Explicit commitment from the very top, especially for the most vulnerable
3. Overarching government framework for all aspects of children’s services across all Departments of State, and not just a priority for education in the Department for Education.
4. Clear vision, objectives and desired outcomes
5. Integrated responsibility for all aspects of policy affecting children across Government
6. Resources
7. Delivery framework

Conclusions

The inconvenient truths about children’s health care are incontrovertible: poor outcomes compared to other developed countries; repeated betrayal of children by politicians failing to give them equity in political will, policy and resources; ineffective leadership and political advocacy by key organisations; territorial silos between professions coupled with fear inhibiting speaking out.

Immediate steps to take include:

• • Work with government
• • Overcome fear of upsetting government
• • Understand the political mind set
• • Challenge professional cultures
• • Get evidence and monitor impact
• • Raise public and political awareness by effective advocacy
• • Develop coalitions of the willing – Medical Royal Colleges, NGOs and parents
• • Define a clear vision for the future design and delivery of services

Neil Postman in his book The Disappearance of Childhood said that “Children are the living messages to a time we will not see!”

Their future lies in our hands now, and we cannot afford to continue to fail them. I issue a call to action by all who are concerned by the current plight of children and threats to their services.