Health and Social Care Bill

Memorandum submitted by the Children’s Society (HS 49)

About the Children’s Society

The Children’s Society, founded in 1881, is a leading children’s charity committed to improving the experience of childhood in the UK. Our national network of projects delivers specialist services for children who are disadvantaged in their daily lives. We support children in trouble with the law, young runaways at risk on the street, disabled children who face social exclusion and young refugees rebuilding their lives in the UK. We work with children who are often forgotten or whose needs are ignored: young carers, traveller children or children affected by parental substance misuse. Our approach is driven by the voices of children and young people, who are at the heart of all we do.


The Bill proposes radical reform of the way in which the NHS is structured and how services are commissioned. It proposes reforms to the duties of NHS bodies and local authorities, accountability of NHS bodies and the role of patient involvement, and abolishes Primary Care Trusts and Strategic Health Authorities.

We believe that the current Bill may offer an opportunity to resolve some concerns around health care services for children and young people, particularly disabled children and young people and looked after children. Our concerns are focused around the provision of joint services for children and young people, strengthening the voice of children and young people about services they receive, and the commissioning of services for children and young people.

The Children’s Society’s key concerns

Joint working

The introduction of the local-authority led Health and Well-being Boards offers an opportunity to improve joint working across different sectors. But there are a number of concerns about how the proposed changes will impact on services for children and young people.

We are concerned that with the proposed loosening of requirements to cooperate, such as removing the duty on schools and colleges to co-operate with Children’s Trusts, removing the requirement for local authorities to set up Children’s Trusts Boards and revoking the statutory guidance on Children’s Trusts, the focus on issues that require joint working across different sectors to deliver specific services for children will be lost.

Children and young people very often access services in the community and in educational establishments. It is also in schools that some health related problems are picked up and identified. Therefore it is important that representatives from education, social care and other services for children participate in designing and providing services for children and young people. Most services are planned around adults’ needs and there is a danger that under the new Health and Well-being Boards children’s issues and needs will not get the desired focus.

Two examples of services requiring the involvement of Education, Health and Social services are speech and language therapy and mental health services. It has been highlighted in different reports that speech and language therapy services are often caught up in local ‘battles’ between health and education, specifically whether services will be provided in respect of a child’s health needs or their education needs and, therefore, who should fund these services. As a result the quality and quantity of provision is different from one local authority to another and many children are not getting vital support that in the long-term would improve not just their education but their life chances as well.

Another example is Children and Adolescence Mental Health Services. The quantity and quality of the provision is different in different local authorities. The involvement of universal services such as education in identifying a mental health problem in a child is crucial. Provision of school based mental health services is often perceived by children to be less stigmatising.

We would like to see:

· Health, education, social services and all other relevant services need to have clear responsibility for meeting children’s health needs.

· The role and remit of Health and Well-being boards needs to be defined clearly and has to include specific responsibilities in relation to children and young people.

· Well-defined mechanisms for local authorities to monitor and influence the way different agencies co-operate in meeting the shared outcomes for children and young people.

· Health and Well-being boards should have clear responsibilities for community services including Children’s Centres and services for disabled children.

· Health and Well-being boards need mechanisms to involve service users directly, particularly those who are frequent users of services but do not have a strong voice, including disabled children and young people;

· Health and Well-being boards to have a champion for children’s services and a representative from education.

Strengthening the voice of children and young people

Under the proposed changes both the NHS commissioning board and local and national HealthWatch will have a role to play in patient involvement. The processes to ensure consistent and proactive involvement of disabled children and young people and their families must be in place and should build on successes achieved under the Aiming High for Disabled Children work.

For the proposals in the Bill for HealthWatch to work to the benefit of children and their families there must be well-identified mechanisms for children and young people to be involved on a long-term and strategic basis in service planning, development and delivery. It is particularly important to ensure that the voices of those who traditionally use health services more but have less of a say about the services they receive, like disabled children and their families, are represented in a non-tokenistic way.

In addition to shaping the look and feel of services, we would also like to see individual children having greater involvement in decision about their own care. However, the reality for many children is that they receive care but are rarely asked for their opinion about the care they receive. At the same time, as noted by an advocate working with disabled young people through The Children’s Society’s Advocacy project, ‘the more the young people the project supported understood and were involved in decisions, the less likely they were to say ‘no’ to treatments, tests etc’, (Evaluation of The Children’s Society’s ‘My Care, My Choice’ project).

We would particularly like to voice our concerns about the needs of looked after children and particularly disabled children living away from home to participate in decisions about their health.

Disabled children and representation in health settings

There are around 13,300 disabled children in England living away from home in long-term residential placements, in educational, social care and health settings. They are more likely to be subject to a number of medical interventions, treatments and assessments and less likely to be involved in decisions about it. Our practitioners have raised a number of concerns about the lack of voice and representation these children have: ‘working with disabled children, some of whom have no formal use of communication, I have found on occasions that drugs prescribed by GPs, psychiatrists or psychologists are being used to control challenging behaviour, without thought for the benefits of the child, the medication will often only benefit staff or support workers in working with the young person’ (Practitioner, The Children’s Society’s Disability Advocacy Project).

Looked after children and health

Looked after children and young people share many of the same health risks and problems of their peers, but often to a greater degree. They can have greater challenges such as discord within their own families, frequent changes of home or school, and lack of access to the support and advice of trusted adults. Children often enter the care system with a worse level of health than their peers, in part due to the impact of poverty, poor parenting, chaotic lifestyles and abuse or neglect. Longer-term outcomes for looked after children remain worse than their peers.

A national survey undertaken by Meltzer and colleagues for the Office for National Statistics (ONS) confirmed the findings of earlier research about the high level of mental health need amongst looked after children, particularly those in residential care. 45% of looked after children were assessed as having a mental health disorder, rising to 72% of those in residential care. Among 5-10 year olds, 50% of boys and 33% of girls had an identifiable mental health disorder. Among 11-15 year olds, the rates were 55% for boys and 43% for girls. This compares to around 10% of the general population aged 5 to 15.

We would like to see:

· HealthWatch needs to be proactive in engaging all children and young people, and particularly disabled children and young people.

· All engagement methods should be accessible and age appropriate.

· Training around communication with children who need communication support should be offered to professionals.

· The core offer introduced under Aiming High for Disabled children set standards for local areas regarding the level of involvement of disabled children, young people and their families in decision making about the services they receive. Positive developments in this area particularly around parent involvement and standards for involvement should remain.

· We are concerned that medical professionals are not adequately trained or experienced in working with disabled children. In many cases communication channels are not established with young people to inform them about the side effects of treatment or medication or to ensure that they have a say in decisions based on how their medication makes them feel. Training for professionals on different means of communication and how to work with disabled children has to be developed.

· Where the young person requires support to participate in a decision about the care they receive, access to an independent advocate has to be ensured. Advocates can support young people to speak up for themselves, and can put across their views for them. It is particularly important in the case of children and young people living in health settings, especially where the child’s views differ from those of parents and professionals.

Commissioning of services for children and young people

We believe that children and families need services that are holistic, easy to access and effectively integrated. In his review, Sir Ian Kennedy points out that services are often developed around the buildings and working practices of professionals when they need to be designed and delivered around the needs of young people. Commissioning a range of children’s services including secondary and public health services by GP consortia may remedy this situation, ensure continuity of services when a young person transits from children to adult services, and make it easier for children with complex needs and their families to access such services.

Crucial to the success of the reforms is the accuracy and efficacy of commissioning. We have concerns that many professionals do not have the training needed to ensure that the needs of children and young people are taken into account, nor is the data currently collected consistent or comprehensive enough to provide certainty around at a local level. Professional training and data collection must be improved to ensure that allocated commissioning budgets reflect local needs and that vulnerable groups of children do not fall through the gaps in service provision.

We would like to see:

· Data in many areas of health and health care for children and young people is poor or non-existent. This has been highlighted in many reports, including in the review by Sir Ian Kennedy. For effective commissioning and commissioning budgets that reflect the true needs of local communities, data collection about children and young people, longer-term conditions, and mental health and consequently Joint Strategic Needs Assessments must be improved.

· GP consortia should be subject to the public sector equality duty introduced under the Equality Act 2010, and required to conduct equality impact assessments of their commissioning frameworks across all equality streams including age.

· GP consortia should also be subject to the duty to cooperate to reduce child poverty in the local area, placed on Primary Care Trusts and Strategic Health Authorities under Part 2 of the Child Poverty Act 2010.

· Each GP consortia needs to have a children’s champion or someone with responsibility to ensure that the needs of the local child population are taken into account in the commissioning process.

· Interaction with community groups who represent the most vulnerable groups also has to be promoted. These can be voluntary organisations, parents groups etc.

· Better training is needed for GPs around children’s health issues, including early intervention and mental health, and in particular around the provision of universal services to disabled children.

· In the case of specialist services commissioned at the national level there needs to be a link to local information collection about services needed and simple referral routes for children and families who require these services.

· We are concerned about the commissioning of services for looked after children and also disabled children placed away from home in long-term health or social care placements. Nearly a third of looked after children are placed outside their local authority area, and over 10% experience three or more placement moves in a single year. [1] With GP consortia commissioning it is not clear who will be responsible for commissioning and delivering services for these children. This needs to be specifically addressed and the duty currently placed on Primary Care Trusts and Strategic Health Authorities under the Children Act 1989, to comply with requests from their local authority to help them provide support and services to chidren in need, should be transferred to GP consortia.

February 2011

[1] Care Matters: Ministerial Stocktake report 2010