AYPH/YPHSIG Conference

Embedding children and young people’s participation in health services – what next?

18/10/2013

Starting point…

• 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

The big questionsEmbedding 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?

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

Children and young people’s participation in health care

decisions. Why?Dawn Rees

Principal Health Policy AdvisorOffice of the Children’s

Commissioner

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

• 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

• 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.

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

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?

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

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

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 commissioner and provider patterns of service

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.

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.

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

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

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

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

• 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.

RCPCH

Bekki Redshaw: Healthwatch Torbay Youth Coordinator

Young People’s voice inHealthwatch Torbay

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“

“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

• 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’

Healthwatch Youth Coordinator

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

CONTEXT CHALLENGE: limited resources

CONTEXT: Torbay =

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

Torbay Youth Power

“Carry on Skool Nursin”

TYP Launch

LOOK OUT Young InspectorsLOOK OUT Young

Inspectors

LOOKING OUT for young people in Torbay

Targeted groups

Events

Multiple methodologies

“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

… final words

“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

“I just want to make a difference so people have better lives.” Becca

Bekki RedshawHealthwatch Youth CoordinatorHealthwatch TorbayRoom 17Paignton Library and Information CentreGreat Western RoadPaigntonTQ4 5AGEmail: bekki.redshaw@healthwatchtorbay.org.uk Direct Dial 01803 402751Mobile 07584 483323   http://www.healthwatchtorbay.org.uk  HWTyouth Torbay Youth Power - Healthwatch 

Thank you

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

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

‘Embedded’ participation is…?

• Integrated and integral

• Meaningful

• Well-supported

• Inclusive and flexible

• Realistic

• Collaborative and sharing learning

• Demonstrates impact

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?

Next steps

• Blog: www.younghealthparticipation.com

• Twitter: @louca_mai or #cyphsc

• louca.brady@uwe.ac.uk

Thank you!