Embedding and Sustaining Participation

14th October 2014

Leanne Walker, Amanda Tuffrey, Anna Wilson, Dr Fiona Warner-Gale, Dr Cathy Street and Young Minds,

parents and carers

If CAMHS participation ended…

Personal views from GIFT young sessional workersAmanda, Leanne and Anna

And a written contribution by Rachel, read by Hannah.

‘If participation didn’t exist there would be no voice for young people

they would feel marginalised and not feel like they are an integral part

of service transformation.’

Amanda Tuffrey, GIFT Young Sessional Worker

‘CAMHS wouldn’t be as successful without participation. Service users and parents and carers are such a

prominent force it would be excluding one of the most important

factors in service transformation.’

Amanda Tuffrey, GIFT Young Sessional Worker

‘It has been very important in my personal development and has

opened up so many doors for me in my life, being here today is one of

those.’

Leanne Walker, GIFT Young Sessional Worker

‘It has become an important part of CAMHS and would leave a big hole if it was gone. I would feel instead of

moving towards things like improvement, better care and

communication that services would be going backwards.

Leanne Walker, GIFT Young Sessional Worker

‘Young people have invested a lot of time and effort through

participation into improving services and things are slowly changing but

were far from being where we want services to be.’

Anna Wilson, GIFT Young Sessional Worker

‘One service user said to me that participation gave her something to

work towards and that without it she would be back in tier 4 services.

I think this says it all about how valuable participation is to those

involved.’

Anna Wilson, GIFT Young Sessional Worker

‘CAMHS needs the voice of young people to make it stronger. It might not be perfect yet, but it’s come so

far in the last few years with the help of young people and supportive

adults.’

Rachel Vowden, GIFT Young Sessional Worker

‘Personally, I’ve only grown confident because of the work I’ve

done for CAMHS and it’s really helped me as a young person

growing up with mental health issues to become a better person.’

Rachel Vowden, GIFT Young Sessional Worker

‘What about from your perspective – what’s changed for you?’

Writing articles for the MyAPT website

“Ask Young People” section on MyAPTwebsite

Being a part of the organising process. Working with adults to create young person led opportunities

Attending National board meetings, Board co-chair, Young people’s section of meetings

Leading workshops at national events

Meeting the Health Select Committee, advising MPs, giving our opinions &answering their questions to young people

Meeting with commissioners

Linking with collaborativesand local participation groups

Advising on National Service Specifications, and Integrated Services

Participation progress – a few examples

• Recruitment and Selection – training and involvement, DVD resources for managers on recruitment

• Routine Outcome Monitoring – partnerships with young people, technology and apps

• Recruiting young people to participation – peer led approaches• Young people are active in designing clinical and waiting areas• Young people’s involvement in re-designing services• Developing ‘youth proof’ information, clinical letters and websites • Shadow Board of young people, works alongside the CYP IAPT

Board• Young people are beginning to influence commissioning - are

involved in commissioning• Jointly run participation networks – with action learning sets• Annual regional conferences – co-designed with young people

Sustaining participation in the North

West - Cheshire and the Wirral

• Involvement in all Recruitment & Selection training

• Overarching CWP Participation group, which links up with local groups to share ideas and experiences

• Participation members have met with CCG leads, Trust Executive leads and Safe Guarding leads

• Developing an animated film with Participation support, about CAMHS

NEYH-Evaluating CAMHS: Are

Young People Welcome?

What Have We Done To Embed Participation beyond CYP-IAPT?

16

• Set up Young People’s Participation Groups that go across boroughs and services (CAMHS/School Nursing/Specialist children’s services)

• Built Partnerships with local voluntary & statutory organisations & universities (sharing venues, working on joint projects & events, pooling resources)

• Set up staff participation working groups and involved clinicians & managers in participation delivery (as facilitators and supporters)

Adding CYP participation to CAMHS staff job descriptions –

it’s everyone’s business

CYP involvement in recruitment of staff (panels, job descriptions

& question writing)

Young people in corporate induction videos – explaining

what they want from staff

• Celebrated our progress, Evaluated impact and made the case for continued resourcing!

One example of how small changes have made a huge overall impact:

London

• The young people’s participation team for Swindon, Wiltshire and Bath & North East Somerset CAMHS have for the past three years delivered staff training on participation to leadership teams and trainees at Reading University.

• They have developed their own programme which is hands on and participative.

• One of their aims has been to challenge the perceptions of clinicians regarding the role of young people in shaping CAMHS and their own treatment.

• They get positive feedback Excellent. Increased my awareness and willingness to push

Oxford and Reading Collaborative

• Formulated an initial two year participation plan alongside TorbayCAMHS management with the aim of supporting, training and embedding participation values and practice

South West Collaborative

• Their expertise has helped them to exceed the targets for training and engagement, moving into mystery shopping and staff appraisal with the children and young people’s service users group, as well as commencing sibling and family participation work.

• They’ve been instrumental in embedding children and young people’s participation across the South West CYP IAPT collaborative, having established the collaborative’s Shadow Board

Sustainable Participation –what young people say…• Celebrate the great work that has already happened

• Continue to recruit and engage young people– Recognition of involvement

– Social benefits

– Developing new recruits

• Promote local and national forums so young people can get their voices heard

• More emphasis on young people’s ideas –

a supermarket wouldn’t ignore the needs

and demands of their customers!

Sustaining participation

• Keeping the skills local, with joint ownership of the way forward with young people

• Establishing commitment, sign up and support at a strategic level• Collaborative partner driven Communities of Learning and Practice• Developing Entrepreneurial thinking

– participation groups learning how to find/create opportunity, seek and apply for funding such as small grants,

– have commercial awareness - what they can sell to be self maintaining - such as training

• Embedding the participation pathway – building social capital - i.e. capturing and using the skills of young

people and feeding that back into the system. – giving commissioners guidance and standards for commissioning

participation (the future will be with commissioners not providers)

Being developed as a tool to help people understand how to support participation to achieve positive outcomes

• Shows different ways and varying levels that young people might participate in services.

• Each step will be have examples of effective or innovative practice and practical ways of supporting the process

Introducing…

Leading on parents and carers participation in CAMHS

The story so far…“You build my

resilience and I too can build

resilience in my child.”

Personal reflections from parents

• Why participation is important…

Communication• Early contact with CAMHS can make a difference to all future

experiences

• Parents are keen to develop a partnership with clinicians to support the child/young person through treatment

• Make available information about children and young people’s mental health in a range of formats

• Always explain the process ahead and what to expect for both CYP and parents

• Understanding the tensions around confidentiality

Access, Equality and Diversity

• Arranging appointments around family commitments – work, school, faith activities -can make a big difference

• Where possible, keep language simple, avoid jargon

• Explore different options to access hard to reach groups

Service Leadership and Development

• Support parents to work in partnership with the therapist to learn about strategies ‘for how we can strengthen our child’; work with the needs of the whole family and strains and pressure family is under.

• Involve parents to inform service design, delivery, commissioning.

Workforce Development

• Involve parents in the recruitment and induction processes to establish a culture of partnership with parents

• Increase awareness of additional conditions and co-morbidity issues

Methods of Engagement

• Be prepared to listen, to listen to positive and negative experiences, and make changes as a result

• Inform parents about the changes made as a result of consultation and feedback

• Parent / peer support groups can have invaluable benefit both in the short and long term

In pairs, discuss the following:

• What outcomes would you like to see as a result of involving parents in CAMHS?

• What challenges do you face with parent participation?

• What can your service do to address the improvement of participation with parents?

What outcomes would you like to see as a result of involving parents in CAMHS?

• Influence commissioners around holistic services

• Always consider the impact on the whole family

• Better communication about how feedback and outcomes have changed the delivery of care and the delivery of services

• Reduction in DNAs

• Improved access to early interventions so we can access help when the problem first arises

• A non-judgemental partnership

• (feeling listened to, mutual respect)

• Knowing the effectiveness of the intervention

What challenges do you face with parent/carer participation?

• Waiting times and the impact this has on managing expectation and parent/carer

• Getting the timing right – managing expectations around key points in the journey

• Understanding confidentiality

• Accessible opportunities to attend appointments, parent groups etc

What can your service do to address the improvement of participation with parent/carers ?

• Be actively involved. Take part in parent forums where they exist. Set one up if it doesn’t.

• Acknowledge what parents know and raise the profile of that

• Work together to check understanding and avoid assumptions

• Greater awareness of consultation opportunities

• Establish parent-to-parent dialogue and support through peer networks

Next steps…• Develop action plans

• Capture case studies of best practice

• Design and write toolkit content for CAMHS and parents

• London & SE- Workforce Development

• Oxford/Reading - Access, Equality and Diversity

• North West - Service Development

• South West - Communication

• North East - Methods of Engagement

• Continual dialogue with parents to develop the toolkit

YoungMinds is working with NHS England to support the participation of parents and carers in improving mental health services for children and young people.

We are looking for parents to be involved in this work with us to help us shape and inform what we do.

www.youngminds.org.uk

Free, practical resources to help everyone in

the school community step up and support

pupils’ academic resilience.

VisionOur vision is of a society which is active in building the emotional resilience of children

and young people, and which responds caringly and effectively when necessary so that

we create emotionally strong, healthy, contributing and independent adults, families and

communities.

MissionImprove the emotional resilience and mental health of children and young people

throughout the UK by informing and actively engaging with children, young people,

parents, policymakers and professionals