Ayph.yphsig conference_embedding participation workshop


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Presentation which formed part of workshop at AYPH/YPHSIG conference on 'Addressing young people's health inequalities' - 17-18 October 2013, London

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  • I’m a researcher and member of INVOLVE longstanding interests in public involvement and research with children and young people.
    Currently undertaking a PhD at the University of the West of England on ‘embedding children and young people’s participation in health services’. In July 2013 chaired a ‘Making Research Count’ workshop which reflected on the challenges and opportunities for children and young people’s participation in the context of wider changes in health and social care, and provided practical examples from children and young people about their experiences of being involved.
  • Including children & young people
  • * So HOW TO ensure this happens?...
    *Healthwatch Torbay recruited Youth Coordinator – me!
    Benefits – one specialist youth worker holds work - strategically and operational planning & delivery
    Challenge – one specialist youth worker holds work - strategically and operational planning & delivery
    My remit was to devise ways young people can be involved –
    It was an organic process developed form learning and skills from previous post of participation with children & young people involved in Social Care
  • Each local area will have it’s own unique context which will shape how work is delivered.
    Small area consisting of 3 unique towns – where young people DO NOT travel/mix
    Partially territorial partly because of extremely high transport costs
    Cuts in youth services as most areas dramatic – provision for young people every much reduced therefore groups to engage with young people depleted(and often demoralised)
    Red areas are those that are in the top 10% areas of deprivation in Europe
    Highest number of over 80 year olds in the country which impacts on use & focus of health services
  • Understanding factors around young people and what impacts of their involvement
    Involving young people in developing Health services is in it’s early stages although there has been some great work.
    Young people are not all empowered to complain – I have engaged with over 800 young people – I have asked approx 2 thirds if they have complained to a service - 6 have
    CLA constantly in meetings and asked their views but level of cynicism on how much they are listened to
    YOUNG CARERS extremely busy and responsible lives which can be chaotic
    Disabilities/SEN skills range of different ways of engaging – disabilities, non-verbal, autism impacts on how young people can engage - avoiding group work!
    LGBTQI – issues around confidentiality of their identity, lack of trust and concerns re homophobia
    BME understanding differing cultural contexts
    Education – not accessing schools where schools should be an accessible avenue to talk to young people – I will briefly look at this later
    Over-consultation of all these targeted groups and lack of feedback or experience of any immediate changes
    Research identifies these groups as some of the highest users of health services, either as children and young people or as adults
  • I was also aware that there were great expectations on Healthwatch to be the voice of all people to all services.
    2 weeks in post I was directed by a Health Commissioner to deliver a evaluation of non-communicative young children with Autism! I had to tactfully say that this was not my role but I was happy to support them developing strategies they could do this! This could involve them commissioning Healthwatch to recruit the right person with the right skills to deliver the work to ensure it was successful and meaningful to all involved.
    This highlighted for me the need to get the balance right –
    How to influence from Bottom up as well as Top down
    Feed into Health & Well Being Boards and CCGs
    How to embed children and young people in ALL ASPECTS of commissioning processes
    How to do this as one person!
  • So I'm going to take you on , linear time line on how Healthwatch Torbay has negotiated these challenges
    that evolves and develops and becomes less linear but more responsive over the past year
  • Torbay LINks had a young peoples group already = Torbay Youth Power
    Benefits – group already established, the work was started
    Challenge - Small group – can a small group be representative of a wide range of experiences and views?
    Formed group – how to expand membership without taking away ownership form existing members
    Solo worker – how do I as a single worker support this small group let alone a larger group?
    Young peoples capacity young people have very busy lives with pressures of exams, jobs and some young people have additional commitments such as young carers. This means that time to offer is limited
    However my remit stated that I needed to expand group - Raise profile
    Engage in supporting campaigns – iLiveiGive & Rowcroft Hospice walk with media promotion. This also allowed team building and gave young people opportunity to get to know me. Developing relationship is the foundation of the levels of success of any engagement work
    Make FUN so young people want to stay engaged and always have FOOD
  • TYP wanted to focus on an evaluation of the School Nurse Service as they saw it as an important way for young people to access Health services and information. However tye view of the core group was that there could be many improvements to the service. To ensure any evaluation feedback was wider than the limited number of TYP membership I worked with them training, supporting and coordinating them to develop as Peer Consultation Group.
    This enabled me to develop their understanding of the potential of their role to gather wider representation of experiences
    Reality it’s been a real challenge getting into schools.
    Key elements to overcome this
    to identify and develop relationship with key staff members.
    identify where you can help them – the one school we did deliver was running a Health Day for Year 9 students and we had something to offer them. Identify which Volunteer Programmes are running in which schools and explain the opportunities you provide for schools and students. Go in with complete package and be clear you do not expect school staff to be actively involved! However this is extremely time consuming – we have 9 Senior Schools in Torbay, and was disheartening for members of TYP.
    Strategic Solution Go to the Top! After 9 months to get mtg with Head of Schools where I invited joint Commissioners it is today!
  • Next step was to develop strategies for making connections with wider group of young people who may/can not join an on-going group.
    So they can know about HWT & communicate with us indirectly
    Developed website designed with core group – includes comments/feedback page which in 6 months has never been used!!!
    I have twitter – FB – with clear rules of usage to ensure Safeguarding - adults can “like” TYP page which gives them information but not direct access to young people I engage with
    Young people friend me NOT vice versa and through this I invite them to join Groups I create that are around specific opportunities
    All 3, website, FB & twitter can post on Survey Monkey on-line surveys
    Challenge is that these processes require expertise and are time consuming and need to constantly keep up to date –
    We are reviewing our website now as it is out of date and as have added lots of information in a boring format – if website not easy to use and appeaing will not be used
    Looking at improving inclusion by methods developing video clips so accessible to learning disabilities and sensory disabilities
  • Next steps – develop direct contact with new young people to expand membership and diverse range of feedback
    Local college South Devon College which runs Health & Social Care & Youth Work Courses
    These courses required students to complete community projects which gave an opportunity to promotion Torbay Youth Power & for students to have a voice
    It also embedded in the students developing practice an understanding of the requirement of, plus direct experience of the value of, “patient engagement”
    I worked alongside tutors and students to develop the project and also the fundamental tool of relationship building with young people.
    I delivered interactive quiz which gave information and gathered views and experiences = this has become a useful and successful tool for other engagement opportunities
    Students designed new Torbay Youth Power promotional materials and project was promoted in the local press which also raised the profile of TYP & Healthwatch Torbay.
    Worked well so …
  • Delivery of TYP Launch at local South Devon College
    Over 300 students and 12 Professionals – service delivers, managers and Commissioners were involved
    Creative Consultations ran in the morning in main area of the college and throughout the afternoon at the Launch
    Intro speech by members of TYP group
    Interactive quiz
    Speed-questioning – professionals requested to bring ONE question they want to ask young people and speed-dating style with students.
  • Creative consultations activities devised by Level 3 students for their course requirement of a Community project.
    Activities focussed on Mental Health, Sexual Health, Physical Health, Drugs & Alcohol, where they gathered baseline information from other students that recorded knowledge, experiences of Health services and gathered recommendations for creating more young people friendly services
    Results were written up in Report and distributed to Commissioners, Service Mangers and Councillors
    The amount of information gathered through these processes would have been impossible for me to gather as a solo worker. It actively involved young people, developed skills and understanding and evaluations recorded that user involvement would be seen as an integral part of their practice as Health & Social Care practitioners in the future!
  • Engage with other projects – National Citizenship Service where young people deliver Social Action Project. I had to deliver a Dragons Den pitch which I again used the health Interactive Quiz as a ice breaker. Young people agreed to work with me and we explored what they would do – it is important that young people lead in their areas of interest. The group developed a creative peer consultation – young people’s focus Emotional Well-Being and Bullying
    Delivered during summer holidays could access young people outside of school time
  • Issues – by this stage there was a theme forming of young peoples priorities. Results of engagement identified that Bullying was a core theme which impacted on wider areas such as Emotional Well-being/Mental Health.
    Young people shared they developed unsafe strategies to deal with low self esteem developed form being Bullied and feeling there was nowhere to go. These included risky choices and behaviours around Drugs & Alcohol misuse, Impacts on Mental Health including extreme depression and thoughts of suicide. Bullying impacted with Sexual Health with sex being used as a way to make yourself popular or unsafe relationships developing from low-self esttem impacting on inability to assert rights
    Acting on a bottom-up Young People's focus I developed an Emotional well-being project over 6 months – engaging with the groups I was working with, one off consultations and using Survey Monkey and Social Media. Each method engaged with a small number of young people but combined over 300 young gave their views experiences and recommendations on how to address this issue.
    Report was delivered to Health & Well-Being Board and is feeding into Improved access to Psychological Therapies and CAMHS development work.
    HWT part of Consortium to develop a new project Bullying Kite Marking system where Healthwatch Torbay role is to support young people running the programme to evaluate how organisations that work with young people are ensuring they are safe places for them to be. We will be looking to engage in hospitals, CAMHS , disability projects etc
  • Running alongside this was the development of Torbay Young Inspectors programme.
    LOOK OUT Young Inspectors is national programme where young People are trained to inspect services for inclusion, accessibility, involvement and meeting needs of young people
    Delivered in partnership with Local Authority Youth Service, we overcame the continuous impact of budget cuts by polling our resources which includes me!
    16 young people were trained by Participation Works a National organisation and the group have delivered inspections to youth projects, Drs surgeries & now we are developing inspection of local hospitals. Inspection Reports Feed directly into Commissioning process
    Second recruitment is in process where we are delivering training to a second group targeting Young Carers, Children Looked After, Disabilities so can ensure they have equal access of opportunity as we can tailor the training to meet their individual needs
  • One of my first activities in post was to ask young people what were the best ways of engaging young people – they said “Come to us!” visit existing groups and go into their communities, where they feel comfortable and are supported by staff or community members they know and trsut.
    This is particularly important when engaging with those considered hard-to-reach so I work alongside existing groups i.e. Disability council / In-Care Council / Young Carers/Torbay Pride LGBTQI youth group
    These are time based pieces of work – 3 months working alongside permanent staff to develop relationship and trust with group members
    This creates a Give & Take – projects which are feeling the impact of reduced budgets have a free worker!
    With the In Care Council I am helping the LA set one up based on my experiences in my previous role.
    Build up picture of their day to day lies and how Health Services play a part in them.
    After 3 months report of findings written and distributed.
    Also as I am then well know by staff and young people, it is easier to visit with one-off consultations or longer-term participation projects.
    Examples of ways of working include delivering a creative consultation at Young Carers Funday. I tweaked the Young Inspectors training to deliver to Adult Young Carers to skill them up to be Peer Evaluators
    I am working with Torbay Pride youth group supporting staff with a video project about their experiences as LGBTQI young people and the impact on their health i.e. mental health, use of drugs and alcohol and sexual health. Without building relationship with these young people I would not be able to explore these sensitive and complex issues with them.
  • There are two favoured methods that I am requested to deliver.
    Having a core group which I have already explored some of the issues of - and one-off events.
    Events are not my favourite method! They involve high resource costs – materials, time, staff
    There is an expectation that Young People will “come to you” which involves transport, taking time out of already busy lives, and confidence of young people
    And usually engages with confident young people only and I certainly do not disagree that confident young people have a right to a say!
    Relies on good relationships with other organisations to promote and support young people to attend therefore asking them to allocate stretched resource to attend.
    As large number of young people developing relationship is limited – this impact on quality of information gathered especially if around sensitive issues i.e. mental health or sexual health
    However Events well planned and resourced can be dynamic, creative and give young people opportunity to meet with other young people they may not have had the opportunity to meet before – remember young people in Torbay do not travel well!
    I know regularly involve Speed-talking with Commissioners and Senior Management which works really well for both adults and young people or so the feedback says.
  • Conclusion after 1 year
    Multiple methodologies
    Move away for a Core group – results in wider representation – but can be a steering group
    Go to young people - Don’t expect them to come to you – aware youth provision is greatly reduced –
    Work with young people who use the service
    Manage expectations of internal and external, mangers/commissioners
    Use social media with attention to Safeguarding
    Use creative methods and attention to differing needs
    Be flexible
    Listen to young people and develop ways they can take a more active role, including fund raising for specific pieces of work and creative resources to deliver
  • CYP gain understanding of issues that affect them and their communities gain new skills meet new people with different life experiences and views
  • Ayph.yphsig conference_embedding participation workshop

    1. 1. AYPH/YPHSIG Conference Embedding children and young people’s participation in health services – what next? 18/10/2013
    2. 2. Starting point…
    3. 3. • Despite increasing profile of CYP’s participation in health and social care services, there’s a lack of evidence about how to ensure it is meaningful, effective and sustained • Limited examples of how guidance is applied in practice • Variable understanding of how principles and practice of PPI, public engagement and CYP’s participation intersect
    4. 4. The big questions Embedding children and young people’s participation in health and social care services: - How is children and young people’s participation defined and operationalised? - What does it mean to ‘embed’ children and young people’s participation within services and organisations? - What needs to be in place for participation to be meaningful, effective and sustainable?
    5. 5. Today • Dawn Rees (OCC) • Bharti Mephani (RCPCH), Damian Wood (YPHSIG) members of the Youth Advisory Panel from the Royal College of Paediatrics and Child Health • Bekki Redshaw (Healthwatch Torbay) • Louca-Mai Brady (UWE) • Questions and discussion – your thoughts on embedding participation
    6. 6. Children and young people’s participation in health care decisions. Why? Dawn Rees Principal Health Policy Advisor Office of the Children’s Commissioner
    7. 7. Children’s Rights • UN Convention Article 12 – Listen to children’s views • UN Convention Article 17 • Access to information and mass media – Children have a right to get information that is important to their health and wellbeing • UN Convention 24 – Right to good quality health care and information to help them to stay healthy • UN Convention 27 – Right to a standard of living that is good enough to meet their physical and mental needs
    8. 8. • • • • OCC is a national children’s rights organisation, led by the children’s Commissioner for England and established under the Children Act 2004 The Children’s Commissioner has a duty to promote the views and interests of all children in England, in particular those whose voices are least likely to be heard, to the people who make decisions about their lives. We actively involve children and young people in our work We sponsor a group called Amplify (CYP aged between 8 and 18) who work closely with us, interview staff and researchers, help us plan Takeover Day, produce CYP friendly versions of our reports
    9. 9. • For each project area we look at the best way to make sure the voice of children and young people influences our work. • We do our best to involve those whose voices are less likely to be heard, have specific experiences or are from vulnerable or marginalised groups. We also make sure we hear the views and experiences of children and young people who are covered by the Equality Act 2010, and so we take into account gender, sexual orientation, disability, age, race, religion and belief.
    10. 10. An example of participation in OCC • “We would like to make a Change” , OCC March 2013 • Identify whether CYP are systematically involved in emerging new health systems – 100 local health plans found only 28% actively involved CYP – Most were ‘works in progress’ – Some loss of momentum – No noticeable difference between local Healthwatch pathfinders and non-pathfinder LA areas – In general CYP more likely to be consulted on strategic planning than delivery, review and evaluation
    11. 11. Are we consistent? • Children and young people for their views about what they might wear today, where they might go on holiday, what movie to watch, what to eat? • If the answer is yes then we are conscious that they have the ability to think, express views, have an opinion • If the answer is no, do we think we know best, assume they are not competent to give an opinion, is our status threatened, do we infantilise them?
    12. 12. Is participation meaningful? • “There is a critical difference between going through the empty ritual of participation and having the real power needed to effect the outcome of the process” Arnstein 1969
    13. 13. Young People tell us that • Participation is exchanging information and ideas with others • It is contributing to an action • It is making it easier for people to understand each other and become interested in what each does • It is about becoming a ‘doer’ instead of just a ‘hearer’ Young People’s views, Commonwealth Secretariat, 2005a
    14. 14. Tackling assumptions and stigma • About children and young people’s abilities to contribute • About their interest in their own health • About their right to a voice in decisions about their health services • About their right to choice in the type of health services that are provided • And their right to be consulted (No decision about me without me) • About their ability to influence peers • About their knowledge of what will engage children and young people • About their potential to influence traditional
    15. 15. Another perspective • “Interestingly, it was not the case that children objected to adults making decisions on their behalf – on the contrary, many children accepted that adults were often the best placed to make decisions. The issue was more that children were excluded from understanding the rationale on which a decision was based” Davey, OCC Report 2010.
    16. 16. So what does that mean? It means that the practical aspects of the right to participation must be considered in each and every matter concerning children. As a fundamental right of the child, the right to participation stands on its own; it requires a clear commitment and effective actions to become a living reality. So it is much more than a simple strategy. It was for this reason that the Committee on the Rights of the Child identified the right to participation as one of the guiding principles of the Convention. Participation is an underlying value that needs to guide the way each individual right is ensured and respected; a criterion to assess progress in the implementation process of children's rights; and an additional dimension to the universally recognized freedom of expression, implying the right of the child to be heard and to have his or her views or opinions taken into account.
    17. 17. And in doing so • Can highlight practical benefits to services – new services are more likely to meet the expressed needs of children thus improving patient experience • Contributes to improved governance and service accountability • Actively engages young people in citizenship and inclusion, enhances learning, empowerment, engages children and young people in the adult world and vice versa • Engages their practical, personal and social development including knowledge, skills and confidence Kirby et al 2003
    18. 18. Current policy context • Equality and Excellence: Liberating the NHS 2011 “no decision about me without me” • Local democratic legitimacy • Health and Wellbeing Boards – JSNA, Local wellbeing strategies – Integrated planning and delivery • Public Health England – early intervention and prevention • Health and Social Care Act 2012 – greater local involvement, accountability – Healthwatch, Clinical Commissioning Groups
    19. 19. Some thoughts • How to address the health needs of marginalised children • How to engaged children and families who find it hard to access services • Who is asking vulnerable sick children what they want • What about children with profound developmental and physical disability • What about BME populations, who is asking those children and young people what works for them? • How do we address issues of culture, sexuality and gender when seeking the views of children and young people
    20. 20. What might move it on? • • • • • Actively engaged Health and Wellbeing Boards Local Healthwatch engaging young people in active participation relating to local health services Realising the „Healthy Lives Healthy People‟ and „No Health without Mental Health‟ vision of local communities improving health and well being makes it imperative that young people are not excluded and are empowered to contribute effectively to developing services Remembering what we have learned from You’re Welcome, local health strategies, participation programmes organisational memory Leadership – principles of engagement and participation need to be understood by leaders as well as practitioners and for the principles of participation to be reinforced by organisations as well as those with practical experience and enthusiasm
    21. 21. • • • • Engaging children and young people can help tackle the stigma related to illness and help promote good health and that a tackling stigma framework is available www.chimat.org.uk CCGs, PHE, Local Health and Well Being Boards should consider resourcing young people’s forums to ensure that young people are able to influence local policy development and be involved in the designing and delivery of services. Commissioners, in creating more choice for patients, need a forum for a continuing dialogue with young people to maintain full awareness of their needs and the kind of services young people want. Using outcomes frameworks could help participation work by identifying evidence of the impact of participation activity on commissioning and provision.
    22. 22. RCPCH
    23. 23. Young People’s voice in Healthwatch Torbay Bekki Redshaw: Healthwatch Torbay Youth Coordinator
    24. 24. Healthwatch Torbay Vision Healthwatch Torbay will be the local consumer champion for health and social care services in Torbay, giving a voice to local people, community and voluntary groups to influence the way their services are planned, purchased and provided. It will be the independent local consumer champion for the public to promote better outcomes in health for all and in social care“
    25. 25. “Healthwatch England will act as a champion for those who sometimes struggle to be heard” “a strong voice for children and young people, as well as adults, in both health and social care” Anna Bradley, Chair of Healthwatch
    26. 26. • include their views in communications with commissioners • involve them in monitoring health and social care services at all levels DH (2012), ‘Summary Report: Issues relating to local Healthwatch regulations’
    27. 27. Healthwatch Youth Coordinator
    28. 28. CONTEXT CHALLENGE: HUGE range of services •Advocacy services •Ambulances •Cardiology services •Care at home •Care in the home •Carers Emergency Planning services •Carers Support Workers •Carers’ respite services •Carers’ services •Carers’ Support Workers •Children’s services •Community health teams •Community hospitals •Continence services •Day centres •Dentists •Doctors •Domiciliary care •Drug and alcohol services •Family Planning services •Fertility services •GP surgeries •Health Visitors •Hospitals •Learning Disability support •Maternity services •Meals on wheels •Mental health services •Midwives •Nurses •Nursing homes •Occupational therapy •Opticians •Palliative care •Patient transport •Pharmacies •Physiotherapy •Podiatry •Protecting vulnerable people •Reablement •Residential Care Homes •Residential care homes •Respiratory services •Respite care •School nurses •Self-directed-support •Sensory impairment services •Sexual Health clinics •Sheltered accommodation •Social Workers •Speech and language therapy •Vaccination
    29. 29. CONTEXT CHALLENGE: limited resources
    30. 30. CONTEXT: Torbay =
    31. 31. Empowered to have a voice? Complain? Engage those who are most disadvantaged/seldom heard •Children Looked After •Young Carers •CYP with Disabilities •CYP Learning Difficulties •Lesbian, Gay, Bi-sexual, Trans & Intersex •Black Ethnic Minorities •Not in mainstream education •Home schooled
    32. 32. Torbay Youth Power
    33. 33. “Carry on Skool Nursin”
    34. 34. TYP Launch
    35. 35. LOOK OUT Young Inspectors LOOK OUT Young Inspectors LOOKING OUT for young people in Torbay
    36. 36. Targeted groups
    37. 37. Events
    38. 38. Multiple methodologies
    39. 39. … final words “I think it’s important for people to have a say because it’s not just all about the adults having their say, we need ours too.” Nadine “I just want to make a difference so people have better lives.” Becca “I joined TYP (Torbay Youth Power) because I have ideas and issues that I have personally come across and thought I could do something about it” Ashley
    40. 40. Thank you Bekki Redshaw Healthwatch Youth Coordinator Healthwatch Torbay Room 17 Paignton Library and Information Centre Great Western Road Paignton TQ4 5AG Email: bekki.redshaw@healthwatchtorbay.org.uk   Direct Dial 01803 402751 Mobile 07584 483323    http://www.healthwatchtorbay.org.uk   HWTyouth Torbay Youth Power - Healthwatch  
    41. 41. Key issues from July workshop: who is involved and how? • Equality of opportunity and reflecting diversity • Creating opportunities for participation • Making participation appealing and relevant to CYP • Roles and responsibilities for participation • Support for staff
    42. 42. Challenges and barriers • Complex and changing landscape • Prioritising CYP’s participation within existing structures and processes • Understanding participation and children’s rights • Power • Challenges to recruiting young people and planning involvement
    43. 43. ‘Embedded’ participation is…? • • • • • • • Integrated and integral Meaningful Well-supported Inclusive and flexible Realistic Collaborative and sharing learning Demonstrates impact
    44. 44. Your thoughts… • What is your response to the key characteristics of ‘embedded’ participation which emerged from the July workshop? • What does this mean in practice for you/your organisation?
    45. 45. Next steps • Blog: www.younghealthparticipation.com • Twitter: @louca_mai or #cyphsc • louca.brady@uwe.ac.uk Thank you!