'Who is in overall charge of my child?'
The parents of a child with complex congenital malformations liken the navigation of the healthcare system to 'wading through treacle'.
The experiences of Rachel and Simon and their five-year-old daughter Emily, who also has learning difficulties, are not uncommon.
England's first Children's Commissioner Al Aynsley-Green tells the story of this family as one of the 'lived experiences that lie hidden behind the hard facts of the inadequacies of current services and the failure of political will'.
In a foreword to Growing up in the UK, Sir Al writes of their experience, which they say is like 'wading through treacle'.
The parents ask: 'Who is in overall charge of my child? Why do I need 10 different appointments at different times to see the specialists involved in her care? What is going to happen to her as she grows up and becomes an adult? Who is responsible for integrating her education, health and social care needs? Why do we have to fight every inch of the way for her entitlements? Who cares?'
Working together is key
The need to implement integrated services that are child and family-centred is one of the key recommendations of the report.
It says: 'The need for health professionals to work closely together in integrated services to serve the best interests of children and young people has been recognised for more than 30 years.'
The case for this was reinforced in the 2010 independent report by Professor Sir Ian Kennedy, 'Getting it Right for Children and Young People,' and the report of the same year by former BMA President Professor Sir Michael Marmot, 'Fair Society, Healthy Lives'.
Growing up in the UK highlights how children with long-term conditions often require complex packages of care coordinated by different healthcare professionals across different organisations in health, social and educational sectors.
Changes to the NHS in England under the Health and Social Care Act mean service commissioning is carried out by Clinical Commissioning Groups (CCGs). However, the report says it remains to be seen whether this will assist or impair integration between services.
'Health policy analysis suggests that the emphasis on competition rather than collaboration may impair efforts to integrate services and reduce equity of access to care,' the book says.
There are 'many unknowns' about the details of the act including the role and powers of local health and well-being boards. These boards bring together CCGs and local authorities for joint commissioning of care needs across the NHS and communities such as children's services.
The report recommends 'joined-up' services between CCGs, community and acute young people's services and local authority children's services. It also advises that the planning, commissioning and evaluation of children's health services should be informed by child public health professionals.
Other ways the report suggests doctors can get involved in improving services include:
- Clinicians with leadership roles should work with commissioners to ensure there are services for children with disabilities, and work with local care partners to produce care pathways for such services
- GPs should be given a more proactive role in the ongoing support, monitoring and management of parents whose health needs increase the risk of a harmful parent-child relationship. The report says: 'Primary care is not yet maximising its potential for a strong preventive role in child maltreatment.'
The report acknowledges that doctors can find their ability to prevent situations arising in families limited by the configuration of services. Action by doctors, particularly paediatricians, and other healthcare professionals, is strongly determined by referral pathways and available services laid down by government or local organisations.
A role for doctors
This is why the BMA believes doctors need a key role in commissioning services.
Another area of potential action by health professionals is in lobbying to ensure a MIHL (minimum income for healthy living). Nearly one-third of children in the UK live in poverty and there are areas where the problem is so acute that between 50 and 70 per cent of children are growing up in poverty, the report says.
The concept of MIHL was devised by the London School of Hygiene and Tropical Medicine and is a recommendation of Sir Michael's review.
'Society in the UK should expect its governments to take more effective action to reduce the social, and therefore the health, inequalities currently experienced. Work on the MIHL should inform government's policy on benefit reform,' the report says.
Sir Al says the required changes to children's services and care should be driven at a local level and it is up to all those concerned by the current plight of children and the threats to their services to act.
'The incontrovertible facts and a menu of recommendations are here in this outstanding book,' he writes. 'So, to every reader, my challenge is if you really care about children, then what are you going to do about it?'