On 1st July 2015 the Children’s Rights Alliance for England published two very important reports on the implementation of the UN Convention on the Rights of the Child (CRC): the civil society report to the United Nations on the implementation of the CRC and the state of children’s rights in England (CSR) and a related report ‘See it, say it, change it: Submission to the UN Committee on the Rights of the Child from children in England’ (SiSiCi). I immediately started combing both reports for references to children and young people’s (CYP) participation in health services, which I am sharing as a blog post in case they are of interest to others*. Page numbers are given in brackets.
*Please bear in mind however that this post is only my summary (admittedly a long one, but there is a lot in the reports!) and is not in any way intended to be authoritative or official. Comments and discussion would be very welcome indeed! It would be fantastic to hear what others think about the report and what it could mean for children and young people’s participation in health services.
Children’s rights in legislation and policy
Since the last UN report in 2008 the Government has introduced some measures including “the reform of the Children’s Commissioner, the Ministerial commitment to give ‘due consideration’ to the Convention on the Rights of the Child (CRC) and the statutory guidance to Directors of Children’s Services, requiring them to have regard to the CRC General Principles and ensure children are involved in the development of local services… and the attempt at a child budgetary analysis” (CSR, p1). However the CSR report points out the 2014 Government report to the UN fails to fully address the 20 recommendations made by the UN Committee in 2008 which aim to ensure that all children have all their rights respected with enforceable means of redress. While some aspects of the CRC are replicated in UK legislation, the CSR report suggests that the failure of successive UK governments take forward the UN Committee’s recommendation to expressly incorporate the CRC into domestic law, or as a statutory obligation in relation to the development of policy which affects CYP, has resulted in a piecemeal approach which means rights are dependent on where children are located or what services they receive, rather than the entitlement of every child without discrimination. (CSR, p1) Recommendations related to these general points on rights in legislation and policy, which need consideration in relation to health and other public services (CSR, pI) include:
- A mandatory, transparent system of child rights impact assessment for all policy, legislation and spending decisions.
- A clear set of child rights indicators should be developed alongside the collection and publication of disaggregated data, which cover the full range of children’s rights, and includes data on how well children believe their rights are being realised. Such data should be used as a means of monitoring the resourcing and implementation of the CRC.
- Transparent and participatory budgetary decision-making processes should be established and disaggregated budgets showing spending on children should be published regularly.
- A national strategy for increasing awareness, knowledge and understanding of the CRC should be delivered.
- All professionals working with and for children should receive statutory, pre and post qualifying comprehensive and ongoing training on the CRC.
- Resources should be developed on the CRC for a range of audiences especially parents and specific groups of children, including younger children and disabled children.
And from the young people involved in ‘See it, say it, change it’ (p50):
- All professionals who come into contact with children, including those in the justice system, social services and health-care settings should be trained to trust in children’s voices and stop punishing them unfairly or leaving them in positions of risk. Children should be involved in delivering this training.
- All children need to be listened to and taken seriously in all settings. They must be involved in making decisions about their lives.
CYP’s views on being listened to and decision-making in health care settings (See it, Say it, Change it, Ch6: Health, p35-36)
The majority of CYP who responded to the ‘See it, Say it, Change it’ survey “said that they had not been involved in decisions about their own health care or about the health services in their local area. Only 29% of children [said that] they had had a say in relation to their health care or health services more generally. Of those children who had been involved in decision-making on health care issues:
- 45% said something had been done differently as a result;
- 51% got what they wanted as a result of being involved in the decision-making process;
- 62% felt listened to and respected”
CYP in the focus groups repeatedly said that they did not feel listened to by medical staff. Other children gave examples of medical staff double checking with adults or ignoring their explanations and disabled children in particular often felt they were not listened to medical staff struggle to communicate with non-verbal children. Children also reported repeated incidences of not being believed by medical professionals.
CYP’s voices in health care
Although the CSR report acknowledges that progress has been made in giving CYP a voice in national and local strategic health decisions, it was felt that a key barrier to this is ‘England’s health complaints and advocacy system, which is complex, inadequately resourced and fragmented’(CSR, p8) There are so many other really interesting points in the report related to CYP’s experience of, and participation in health services including:
- The participation of CYP is not yet universal or inclusive. There are considerable regional variations and disabled CYP and CYP in care and care leavers, among other ‘less frequently heard’ groups, are still not routinely or systematically involved in individual or strategic decision-making (throughout both reports). Related to this new duties to reduce health inequalities have not yet led to a strategic, coordinated approach between health and other policy areas (such as welfare, poverty and criminal justice) which have a potential impact on childhood health inequalities (CSR, p23).
- Much national participation activity is focused on young people of secondary school age, and there is a lack of Government-funded provision for younger children to engage in decision making (CSR, p8)
- Due to reductions in public funding and a lack of coordination across health services, many CYP are still not receiving care when they need it or in an age-appropriate manner. There is also insufficient early intervention and community-based services and, possibly related to this, increased rates of CYP attending A&E departments (CSR, p24)
- Transition from paediatric to adult care continues to be poorly coordinated, with families and CYP reporting a lack of information and support (and presumably therefore also a lack of participation) (CSR, p26)
- Hospital-based paediatrics is not mandatory in General Practitioner (GP) training, posing a barrier to GPs learning how to identify and care for sick children. Only around 5% of nurses are trained to look after children. Government is yet to set out a strategy for developing the children and young people’s health workforce (CSR, p26)
See also the report of the UK Children’s Commissioners to the UN Committee, also published on 1st July, which says that ‘austerity measures have reduced provision of a range of services that protect and fulfil children’s rights including health and child and adolescent mental health services’ (p2).
Key recommendations related to CYP’s participation in health services (all apart from the first from the CSR report, pVII-IX)
- All children should be listened to and given clear information and explanations about their health. This should include better information in schools and hospitals for disabled children and those with special educational needs and also for children whose families do not have English as a first language. Key health-care professionals should have basic training in sign language and Makaton so they can communicate with deaf and non-verbal children (SiSiCI, p52)
- There needs to be an overarching strategy for promoting children’s physical and mental health, outlining clear goals and accountability mechanisms – for the full range of services for children, from health promotion to acute care. This should include measures to address health inequalities affecting children, in relation to poverty as well as the specific health challenges affecting groups of children particularly at risk of poor health or who face barriers to accessing services.
- Children should be included in all relevant indicators in the NHS Outcomes Framework, to ensure the NHS is held to account for child health outcomes.
- Children should be included in all relevant patient surveys or other mechanisms for recording patient experience, to ensure their voices inform commissioning and service development. All such mechanisms should be fully accessible for all children (including for disabled children).
- The health complaints and complaints advocacy system should be reformed to ensure it is accessible for all children (including disabled children) and families, and that it helps drive service improvement. In particular, the Government should clarify where complaints about the lack of a particular service should be made.
- A programme of action to ensure better integration across children’s health (including in-patient and community), social care and education services should be developed. For example, a Children and Young People’s Social Care Outcomes Framework should be developed, to sit alongside the public health, NHS and adult social care outcomes frameworks, to support better joined up accountability and approaches across children’s health and social care services.
- Children’s transition between different health services, and especially into adult services, should be well supported.
- The child health nursing workforce should be increased and developed and all GPs should have training in hospital-based paediatrics.
In summary – a lot of food for thought for those of us working in , and with, child health services. The reports also contain a lot of discussion around child mental health services (CAMHS), social care and other areas which relate to the points made above. But I have tried in this post to focus on the points which I think are most relevant to taking a children’s rights-based approach to children and young people’s participation in health services.
It is interesting to note that, in a CQC survey for NHS England published on the same day as the CRAE reports, 43% of 12 to 15 year olds said that they were not fully involved in decisions about their health care and 38% said that a member of staff did not ‘completely’ tell them what would happen after they left hospital. This great blog by Kath Evans and Ruth Hudson from NHS England and Amy Frounks from the NHS Youth Forum summaries some of the implications for the survey and touches on some elements of the CRAE reports highlighted in this post. So hopefully, with people like them driving change, we’re on the way to truly embedding children and young people’s participation and rights in the NHS.