In it, we argue that there ’ s a powerful case for change. Firstly, in simple terms, this is the reality of the world we ’ re living in. We ’ re living in a totally different world, in terms of technology, to where we were 10 – 20 years ago. 74 % of households are online.
91 % of adults use a mobile phone. For young people, the rates of smartphone ownership are high, and increasing. It ’ s this reality, rather than any policy document or anything else, that is going to drive this change. The expectations of the public are changing, and through technology we have more opportunities than ever before to be more active, informed consumers of healthcare. It ’ s commonplace now for GPs to find their patients coming into surgeries readily armed with information about treatment options and NICE guidance they ’ ve gleaned from NHS Choices and other websites. People with long term conditions are also making the most of the opportunities presented by social media to get information, support and advice from other people going through the same thing – Big White Wall is one example of that, and there are others cited in the paper.
It is hard to ask for help Sometimes they don ’ t realise that they need help They value knowing what different agencies have to offer They don ’ t want to be judged They want to feel part of the solution not part of the problem They want teachers and other adults to be able to recognise a problem and help them get help They want to be able to trust the people who are helping them They want information in a language that they understand They want to be involved They want services close to home They want services they don ’ t have to be ‘ referred ’ to From YoungMinds Better Outcomes New Delivery (BOND) http://www.youngminds.org.uk/training_services/bond_voluntary_sector
SLIDE #7: Option 2, with “imagination” photo
Strategic Clinical Network - Youth Mental Health Network Participation
Maxine BullenIndependent PPE FacilitatorSarah AmaniYouth Mental Health Network LeadEarly suggestions - Patient and PublicEngagement in South East Coast StrategicClinical Networks
NHS England Draft Principles ofMeaningful Engagement• We will think creatively and holistically about allthe strengths and assets we have in our peopleand our place• We will build an equal, sustainable andreciprocal relationship• We will build shared purpose and responsibility• We will take time to plan well• We will start engagement as early in the processas possible
Principles cont..• We will start with learning from the past andunderstanding the current context• We will develop and use active listening skillsand emotionally intelligent behaviour• We will respect and encourage diversity anddifference• We will build in training and development andensure we have the right kind of leadershipapproach
Principles cont… We will recognise, record and rewardcontributions• We will build in feedback and responsiveness tothe process• We will use open and transparentcommunication and information
South East Coast3,600 square miles 4.5 million peopleOur PPI model and processes need to;• be appropriate for our population and geography• aligned to work plans and championed byclinicians and managers• make sense to users and to professionals• only do what is best done by networks• avoid duplication, co-ordinate and integrate withother local involvement systems
1.Support Established Partnership andOther Key Groups during year 1• Makes sense to those already involved andallows time for the NHS to settle• Give mandate to Partnership Groups totransform/evolve over the period of 1 year• Allows Cancer, Cardiovascular, Maternity and tosome extent, Mental Health to tap into existingPPE structures for year 1 work plans• Allows effort to be focused on less developedPPE structures in other SCNs
2. PPE in work plans:Think in terms of communities of interest within a‘people bank’.• Communities of interest may be;▫ condition specific▫ geographical▫ shared themes• Collaborate co-ordinate and share with;• Third Sector to extend reach• Academic Health Science Network and HealthEducation Kent Surrey and Sussex• CCGs , AT, Healthwatch and other engagementsystems
Think in terms of communities of interestwithin a people bankCIOCOICOICIO
People Bank - You can get involved indifferent ways• Level 4 Being a user leader• Level 3 Involvement forums – MSLCs,partnership groups, project groups• Level 2 Discussion groups – focus groups,workshops• Level 1 Armchair involvement – surveys,newsletters
Integrate the Inclusion and PPI Agenda• Develop an inclusion group to act as afilter/sounding board/ advisory group to theSenate and SCNs• Recruit from the SEC People Bank andsupplement where necessary by commissioning• Of interest to other NHS organisations tocollaborate?
3.Integrate the Inclusion and PPEAgendaCIOCOICOICIO
4.Develop a ‘Third Sector Local’• Opportunities to tap into and developinvolvement• Several Third Sector Involvement Co-ordinatorskeen to collaborate in SEC already• Charities support user groups, grow new onesand identify geographical gaps. Cancer Voices,Hearty Voices, Learning Disabled training etc• Propose learning set to develop ‘Third SectorLocal’ SEC involvement – to create collaborativeinvolvement mechanism/shared learning
5. Train, sustain and grow user leaders• We have some fantastic patient/carerrepresentatives with many years experiencewho bring a constituency, skills and insights wecould not buy• We need to sustain that leadership• We need to grow the next generation of userleaders• Let’s work with the user leaders we have to co-create this agenda
Summary of early recommendations• Integrate the Inclusion, Stakeholder and PPIagenda• Think in terms of communities of interest withina people bank• Develop a ‘Third Sector Local’• Support current effective Partnership and otherkey user groups for one year• Train, Sustain and Grow User Leaders
Next stepsDevelop• Conversations with people who have showninterest in being involved• PPE Strategy• Realistic and meaningful patient and carerinvolvement in year 1• Collaborate and co-ordinate with emerging PPEsystems in AHSN, HEKSS, CCGs, AT,Healthwatch and others
The Youth Mental Health Network is led byyoung people, families, researchers, clinicians& strategists in support for evidence basedservice provision for children and youngpeople’s mental health and wellbeing.
Youth Mental Health Network On Twitter@Time4Recovery
“No Decision About Me Without Me”What do children & young people tell us?
People in your community (including those withProtected characteristics) are on these sites right now.Community outreach.
Community Health AmbassadorsMary Seacole Award 2011
41% of online users have read someoneelse’s commentary or experience abouthealth issues on an online portal.SOURCE: PEW RESEARCH PRESENTATION THE SOCIAL LIFE OF HEALTH INFORMATION
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