Implementation of the UNCRC in England: Implications for children and young people’s participation in health services

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.

Brave Adam: a call to arms

Like many people in the Twittersphere with an interest in children’s rights in health, the recent loss of the amazing Adam Bojelian has resonated for me on both a personal and a professional level. Adam was a poet and campaigner who packed in so much into his 15 short years. Although like many, I was never able to meet Adam in person, I nonetheless miss him very much and there is a huge Adam-shaped gap in my Twitter world. But other people have written about this really well, including Carmen Soto, Rob Webster, Paul Clarke and many others (see #braveAdam and #celebratingAdam on Twitter). So I won’t duplicate what they’ve written, although I would echo much of it, instead I want to focus on what Adam’s life and death mean to me in relation to my work on children and young people’s rights in health services.

This post was inspired by one written by Adam’s mother Zoe, which I found simultaneously heartbreaking, amazingly brave and utterly inspiring. In the midst of the analysis of mountains of PhD data I find that it is easy to lose sight of the bigger picture. But Zoe’s post brought home to me why children’s rights in health matters now more than ever, and why those of us working in this area should keep fighting to make a difference. So this post is from my heart as much, if not more, than my head. As Zoe writes, we should all seek to be ‘similar to Adam’  and ‘ensure the voices of children and young people, most notably disabled children and young people, are heard loud and clear within the NHS’.

I have written about this in the past (see for example post on 2014 UCLan seminar, and one from CSCY conference) but it’s perhaps best summed up by one of the young people with whom I’ve been working who wrote a guest post in which she says ‘when good participation happens, both parties learn and gain from each other in equal measure’.  Lessons certainly need to be learnt about what happened to Adam, but I think lessons can also be learnt about how social media can be one way for children and young people to have a voice. Although it doesn’t work for everyone, and many platforms aren’t accessible to all children and young people, the way Adam was able to use Twitter to engage with ‘movers and shakers’ in the NHS and beyond was I think a lesson in the democratising potential of social media. I always remember one interaction early on in our Twitter relationship when Adam, who had I think been in hospital for six months or so at that point, tweeted that he hadn’t been able to have a bath during that time because of access issues. His reach on Twitter was such that this issue was rapidly escalated and suddenly, after months of face-to-face requests being denied because it ‘wasn’t possible’ Adam tweeted that he’d been told a way had been found to make it happen and the twitterstorm abated*.  As Adam communicated by blinking the way he used Twitter to create change and raise issues highlights the need to consider what we mean by, and how we enable, children and young people’s voices. Participation need to happen at both a personal level: with children, young people and their families involved in decision-making about individual care and the services they use, as well as at a more strategic level: in planning, shaping, delivering and evaluating services and influencing  policy.

I don’t have many answers yet but, inspired by Adam’s life and Zoe’s post, I will now return to my studies with a renewed zeal to play my small part in promoting children and young people’s rights and voice in health services and the research which informs them. I will become one of “Adam’s Allies” – will you?

If you would like to donate to the cause which Adam requested be his legacy: https://www.justgiving.com/AdamBojelian15

*Although Adam’s mother told me after I first wrote this post that he never did actually get a bath – so maybe there’s a lesson there about social media being good for raising issues/generating heat but that this doesn’t necessarily mean it leads to real-life action?

Researching children’s everyday lives: presentation from CSCY conference

I’ve just come back from a great couple of days in Sheffield at the Centre for the Study of Childhood and Youth conference ‘Researching children’s everyday lives: socio-cultural contexts’. I’m just sorry I had to leave before the end! But while it’s all still fresh in my mind I thought I’d post up the slides on and some background notes from the presentation I gave on some of the ideas emerging from my research:

Background

The starting point for my research is that, despite increasing profile of children and young people’s participation, there’s a lack of evidence about how to ensure it is meaningful, effective and sustained – and especially in health services and research.

As came up in quite a few of the other presentations, ‘childhood’ has many and varied definitions including ‘the status of being a minor, the early-life state of immaturity whether actual or ascribed and the process of growing towards adulthood’ (Alderson, 2013; my italics). Theoretical approaches to childhood in the minority world have been dominated by developmental psychology, and the idea ‘that what children mainly do during childhood is develop towards adulthood’ (Mayall, in press). Also the idea that children are above all to be protected and provided for in order that they may develop well and be prepared to enter into the public domain upon reaching adulthood. Childhood studies, and in particular the sociology of childhood, has challenged these ideas of children being apolitical adults-in-waiting, and instead developed paradigms of children as social actors and childhood as a social space in which children can and do have agency (see references below).

Navigating the landscape

Within England there is widespread acknowledgement that children and young people should be involved in decisions which affect them, and this is increasingly reflected in law, guidance, regulation and policy in relation to health and more widely. The Children and Families Act 2014 mentions children’s rights and the UN Convention on the Rights of the Child, and public involvement is also a key element of the Health and Social Care Act 2012. Increasing awareness of the importance of developing children and young people’s participation in health services in a strategic and systematic way. Patients working in partnership with clinicians and carers in decisions about their healthcare is one of the guiding principles of the 2013 NHS Constitution. In their response to the Children’s Health Outcomes Forum report the UK government acknowledged the importance of children’s rights and the CRC being at the heart of health and social care. The recent Chief Medical Officer’s Report talks about the expectation inherent in the NHS Constitution ‘that patients, service users and the public participate nationally and locally in the development, implementation and accountability processes of health and social care policy and services’. The report goes on to emphasise the importance of the CRC to these participation processes and say that:

“This expectation for patient and public participation has no age limit. Children and young people…should be encouraged and facilitated to participate in decisions about their own care and, more broadly, about the health and social care services and policies that affect them”.

Recent developments at a national level include the NHS England Youth Forum, new children’s experience measures within NHS, The Care Quality Commission involving CYP in their inspection activities, and the involvement of children and young people on the board of Healthwatch England and within local Healthwatch bodies. I also discussed the use of rights-based tools and quality criteria such as ‘Hear by Right’, ‘You’re Welcome’ and Young People Friendly.

Children’s rights

I briefly touched on definitions and models of participation (a topic for another post!) and the UN Convention on the Rights of the Child (CRC), in particular Articles 12 (every child and young person has the right to express his or her views freely in all matters affecting them) and Article 24 (children have the right to good quality health care and information to help them stay healthy). A key implication of the CRC is that all children have needs that must be met in order to optimise their health and wellbeing, and the CRC establishes international recognition that all children and young people have a right to the highest possible standards of both healthcare and participation. In a 2013 General Comment on Article 24 the UN Committee on the Rights of the Child emphasised ‘the importance of approaching children’s health from a child-rights perspective’, and say that:

“Article 12 highlights the importance of children’s participation…This includes their views on all aspects of health provisions, including, for example, what services are needed, how and where they are best provided, barriers to accessing or using services, the quality of the services and the attitudes of health professionals, how to strengthen children’s capacities to take increasing levels of responsibility for their own health and development, and how to involve them more effectively in the provision of services, as peer educators. States are encouraged to conduct regular participatory consultations, which are adapted to the age and maturity of the child, and research with children, and to do this separately with their parents, in order to learn about their health challenges, developmental needs and expectations as a contribution to the design of effective interventions and health programmes (General Comment 15, section II.E. My emphases).

This quote sets out in far more detail that the CRC itself the Committee’s view on what these rights mean in practice for children and young people, both within decisions about their own care and in the development of health services and research.

My research

I then outlined my research in a bit more detail and talked about the two case studies with whom I have now been working for almost a year, exploring how the rhetoric around children and young people’s participation in health services and research becomes reality.  We’re currently coming to the end of fieldwork so I’ll post more later in the year about emerging findings.

We then discussed the ideas on what it means to ’embed’ children and young people’s participation in health services and research, and I outlined the discussions which took place at last summer’s workshop with the Children’s Commissioner and others – the report on the day includes details of the elements discussed on the penultimate slide.

Many thanks to everyone who came to the presentation and/or who I met at the conference later on. I came away buzzing with ideas and inspiration, and hopefully we can continue to keep in touch via twitter, the blog or more traditional means! If you’re interested in contributing to the debates and weren’t at the conference please feel free to comment on this post or via twitter too!

Selected references

Alderson, P. (2013). Childhoods Real and Imagined. Volume 1: an introduction to critical realism and childhood studies. London: Routledge

Alderson, P. (2014). Children as Patients. In G. Melton, A. Ben-Arieh, J. Cashmore, G. Goodman, & N. Worlet (Eds.), The Sage Handbook of Child Research (pp. 100–117). London: Sage.

Brady, L.M., Davey C., Shaw, C. and Blades, R. (2012) Involving children and young people in research – principles into practice. In Beresford, P. and Carr, S. (2012) Social Care, Service Users and User Involvement: building on research. London: Jessica Kingsley, pp.226-242.

Cockburn, T. (2005). Children’s Participation in Social Policy: Inclusion, Chimera or Authenticity? Social Policy and Society. 4 (2), pp. 109-119.

Franklin, A., & Sloper, P. (2005). Listening and responding? Children’s participation in health care within England. International Journal of Children’s Rights, 13, 11–29.

Freeman, M. (1998). The sociology of childhood and children’s rights. The International Journal of Children’s Rights. 6, 433-444.

James, A. and Prout, A. (1997). Constructing and reconstructing childhood: contemporary issues in the sociological study of childhood. London, Falmer Press.

Jans. (2004). Children as Citizens: Towards a Contemporary Notion of Child Participation. Childhood.11(1), 27-44.

Jenks, C. (2005). Childhood. 2nd ed. London: Routledge

Kirby, P., Lanyon, C., Cronin, K. and Sinclair, R. (2003) Building a Culture of Participation: involving children and young people in policy, service planning, delivery and evaluation. London: DfES.

Mayall, B. (in press). The Sociology of Childhoood and Children’s Rights. In Vandenhole. W. et al (eds) Children’s Rights: Global perspectives and critical perspectives. Publisher tbc

Percy-Smith, B., and Thomas, N. eds. (2010) A Handbook of Children’s Participation: Perspectives from Theory and Practice, London: Routledge.

Qvortrup, J.,Corsaro, W.A., and Honig, M.S. (2009).The Palgrave Handbook of Childhood Studies. Basingstoke: Palgrave Macmillan

 

 

 

Involving children and young people in research – next steps

Following the events organised by People and Research West of England on involving children and young people in health and social care research, I’ve created a new page with information and resources as it seems to be an area in which there is growing interest. One of the issues emerging in my recent conversations on this subject has been the relative lack of published information and ‘evidence’ (in the researcher sense of peer-reviewed and critically reflective accounts) on public involvement with children and young people. So hopefully this page will be a start and additions and comments are of course very welcome!

I also recently gave a presentation a couple of weeks ago at INVOLVE‘s annual symposium for advisory group members, along with Jenny Preston, from the NIHR Clinical Research Network (Children).  Jenny and I were invited to start a discussion on ‘involving and engaging young people in research’ and my presentation gave an overview of some of the issues, opportunities and challenges from my experience and discussions at the PRWE fora:

Jenny then followed with a presentation she and colleagues at the NIHR Clinical Research Network (formerly Medicines for Children Research Network) are doing with their young people’s advisory groups. This included highlighting plans to continue the Generation R work they started last year (see films and report).

 In the discussions which followed there was a real sense of buzz and momentum around CYP’s involvement in research, both in its own right and as something that could information public involvement in research more widely. More developments to follow – watch this space…

 

 

 

The digital doctorate: one postgraduate researcher’s virtual journey

Yesterday I gave a presentation to some other postgraduate researchers on my experience of using social media in my PhD research. This post contains a bit more information on that presentation and the material that inspired it, but it’s an ongoing journey so feedback and ideas from others would be great – I still have a lot to learn!

The inspiration for both the title and some of the content of this presentation and post comes from Dr Paul Spencer at the UWE Graduate School and his Digital Doctorate blog, in particular the workshop he ran last year on ‘the Digital Researcher’ (see blog post). The workshop opened my eyes to the potential and possibilities of social media for me as a researcher, as well as getting me thinking more about the use of social media as a research tool.

So here’s the presentation (also my first attempt at using Prezi, which alas it seems it’s no longer possible to embed into blog posts).

As well as this blog and the usefulness (and distraction potential!) of Twitter I also talked about how useful I’d found the #PhDforum academic writing portal, which has a monthly virtual writing retreat. As I live in a different city from my university and often work from home, virtual connections can be really helpful. I wasn’t sure how it would work at first but found that using the portal planner was a great support in helping me to set some writing goals and hold myself to account. The mid-week Twitter chat was also really useful for some virtual peer support. The best thing was ending up with a first draft of my methodology chapter!

Then there’s the whole issue of using social media as a research tool, and the work I’m involved in with INVOLVE on using social media to support public involvement in health and social care research – but that’s for another post…

Involving children and young people in research – PRWE forum

There is increasing interest in children and young people’s involvement in health, public health and social care research. In early 2013 People and Research West of England decided to create a forum for researchers in the area who are involving children and young people in research and/or interested in patient and public involvement (PPI) with children and young people to come together to hear about each others work; explore some of the common issues of working with these groups and to learn from each others experiences.

The first meeting of this group took place in April 2013, and this is my presentation from that event:

Follow this event a second meeting was organised on 20th November 2013 by Claire Novak, Research Fellow at the Centre for Child and Adolescent Health, University of Bristol. Below is a report from the day which was attended by 15 researchers from universities, NHS Trusts and the voluntary sector.

We started off with a presentation about definitions of public involvement and how these relate (or don’t) to children’s rights:

The recent UN Committee Rights of the Child General Comment on Article 24 (the right of the child to the enjoyment of the highest attainable standard of health) and it’s relation to participation rights can be found here. The INVOLVE Briefing Notes for Researchers include the definitions of involvement, participation and engagement discussed.

This was followed by a presentation by Barry Percy-Smith, Associate Professor of Childhood, Youth and Participatory Practice at the University of the West of England on ‘issues, challenges and possibilities’ in children and young people’s participation:

Further information on Barry’s work and the papers he referenced are available here.

We then had three practical examples of applying these principles into practice. I started by talking about the challenges faced in involving young people in a study in which I’m leading the public involvement with my colleague Lorna Templeton:

Claire Novak then talked about her work supporting the Young People Advisory Groups run by The Centre for Child and Adolescent Health, UWE/UoB :

Since 2010 the Centre for Child and Adolescent Health (CCAH) have run two school-based Young Peoples Advisory Groups (YPAGs) in Redland Post 16 Centre and latterly, Fairfield School. The YPAG Redland Green Post 16 Centre is now in its fourth year and is made up of young people aged 16-17 years who have either been educated at the Redland Green School or in one of the feeder schools across Bristol. Fairfield School is one of these and we have a YPAG there, now in its third year. This is made up of 14-15 year olds with a wide range of different heritages. The YPAG model we devised provides a mutually beneficial vehicle through which to access young people as “experts” on being young people rather than a specific condition or disease. The YPAGs meet weekly during a lunch-time where we provide snacks and drinks. All those attending are volunteers who are encouraged by the school staff to be involved. Working with the CCAH is seen as providing a broadening experience and adding value to their school work. It is promoted as enhancing the members portfolio and “making them stand out” when applying for college, university or employment.

In the last few years, researchers have consulted on study proposals, associated documents, research tools such as questionnaires, on research ideas, testing smart phone apps including accessibility and user-friendliness. The YPAG have provided high quality critiques and helpful advice which have been incorporated into research study and ethics applications. They have also acted as focus groups and advised on initial ideas for research.  Initially, the consultations were from within CCAH. However recent developments have engendered consultations from other organisations such as Centre for Appearance Research, UWE and Canynge Hall, UoB. Researchers range from undergraduate, MSc, PhD students  through to professional researchers. The YPAGs have also devised, conducted and presented their own research to members of the CCAH following a programme of learning about research developed by the Team to provide continuity of contact and retention of the YPAG members during those weeks when no consultation/ opinion is required. The development of the model YPAG also promotes good practice, strong relationships and positive experiences for potential university applicants.

Makaela Jacobs-Pearson then talked about the work that Children of the 90s (ALSPAC) have been doing to involve young people in their work:

The Original Cohort Advisory Panel (OCAP) was first set up in 2006 as the Teenage Advisory Panel (TAP) and is the Children of the 90s (Co90s) advisory panel of study young people. Over the past seven years it has developed into a group of twenty-three participants who meet six times a year. OCAP members take an active role in organising and running these meetings, whilst still being supported by the Participation Team, and have two chairs, a secretary and a minute-talker. All members are volunteers and receive no payment for being part of the panel, although travel costs, expenses and refreshments are provided.

As a panel, the OCAP members are able to comment and give feedback on (and ultimately shape) many areas of the study. These include questionnaires, clinics/sub-study design and documentation, research proposals on use of ALSPAC data, newsletters, website design and much more. In the last year they have created a ‘Participant Information Sheet’ (PIS) guideline document to help ensure that all information sent to participants is presented in a user-friendly manner, whilst still containing all the relevant information. OCAP members may also volunteer to represent Co90s at wider public and scientific events across the country.

As some of the members of the study are no longer living in Bristol, every effort is made to ensure that they are all able to contribute, with many now Skyping in to meetings or submitting comments via emails and the OCAP Facebook page.

Being an OCAP member provides these participants with a great opportunity to get involved with a world-renowned scientific project, to learn more about research and to gain experience of working in a team, project planning, public speaking and potentially working with the media. OCAP play a valuable and integral role in shaping the future of the Co90s study.

These presentations were followed by some general discussion and a ‘world cafe’ and a report on these discussions is attached here.

More information on future meetings will be posted on this blog, and we hope that these discussions will continue at a national level. Watch this space…

Embedding young people’s participation in health – workshop at AYPH/YPHSIG conference Oct 13

Further to the event in the summer (see earlier blog posts), I followed this up with a workshop at the Association for Young People’s Health (AYPH) and RCPCH Young People’s Health Special Interest Group (YPHSIG) conference on ‘addressing young people’s health inequalities’ in London on 18th October.

My co-presenters were:

  • Dawn Rees from the Office of the Children’s Commissioner talking about the challenges and opportunities facing clinicians, commissioners, mangers, policy makers and the government in embedding children and young people’s participation in health services, with particular reference to the UN Convention on the Rights of the Child and current policy and practice in England.
  • Bekki Redshaw from Healthwatch Torbay talking about the exciting work they’re doing to engage young people effectively within the new health system in England
  • Damian Wood (YPHSIG Convenor, 2009-2012), Bharti Mephani and young people from the RCPCH youth advisory panel giving examples of some of the ways in which they’ve influenced child health policy and practice. I hope to include some thoughts from the young people and the video they showed at a later date, so watch this post for updates if you’re interested.

The presentation from the workshop is below:

In line with the aim of this being an ongoing conversation I then outlined the draft findings from the July workshop (see previous post). Participants then had an opportunity to reflect on their own experience and consider what it might mean for them to embed children and young people’s participation in their service or organisation. Unfortunately we were running short on time, but people were directed to this blog and the #cyphsc Twitter to tag to continue the conversation.

Learning from this workshop will also inform the work of the RCPCH, YPHSIG and OCC to advocate for improved healthcare for children and young people, as well as the next stages of this research. Watch this space for more as the conversation continues…