KEY THEMES EMERGING: CAMHS & PARENT PARTICIPATION FROM PARENT CONSULTATION GROUP

1. KEY THEMES EMERGING:CAMHS & PARENT PARTICIPATIONFROM PARENT CONSULTATION GROUP

2. NHS England have contracted YoungMinds to develop a toolkit to support the implementation of Parent Participation in CAMHS embedding CYP IAPT principles Over 300 parents have registered interest to be involved in the development of the toolkit Approx 10% have agreed to attend focus groups & returned supplementary information of their experiences CONTEXT

3. Initial evidence gathering took place between April – June 2014 with GIFT report on parent participation CAMHS participation survey NHS England CYP IAPT central team CAMHS partnership meetings (through the 5 Learning Collaboratives) Parents (4 telephone interviews & a pilot focus group) CONTEXT

4. We have grouped areas of current activity and are testing these with CAMHS embedding CYP IAPT principles & parents: Communication Equality & Access Leadership & Service Development Workforce Development Methods Five themes

5. There is a knock-on affect in other areas of CYP life, in particular behaviour at school and in public places WHAT PARENTS SAY – WHAT LIFE IS LIKE

6. It can be an isolating experience and the opportunity to connect with other parents or access emotional support is vital There is a negative impact when parents are excluded from assessment and treatments, exacerbated when treatment is not going well Communication of service expectations is helpful (eg waiting times & process) WHAT PARENTS SAY - COMMUNICATION

7. Blaming parents is not helpful There could be advice for parents on what warning signs they could look out before symptoms escalate Parents do not want to have to re-tell the problem and issues at every appointment or to every new professional WHAT PARENTS SAY - COMMUNICATION

8. Building Resilience “They should explain more to parents you know give the. Strategies for how we strengthen our child  I know my daughter self harms it would be good if they can explain to me how I can help her - I don't need to know why. They say we're part of the system when it comes to the problem but not the solution and that is what we want to be”

9. Systems Thinking “My child’s behaviours were blamed on my child and not the system around him and that system is wider than the family”

10. Parent carers really want access to suitable services for their children There are few options (often costly) if local services available are not adequate The pathways need to be clear, eg GP knowledge & referrals How can parents cope with the impact of stigma & CYP attending appointments WHAT PARENTS SAY - ACCESS AND EQUALITY & DIVERSITY

11. Stigmatising Venues “CAMHS need to operate more in local community setting – I work within CAMHS, even with my professional experience going into a hospital there is a power imbalance and there is still stigma sitting in a mental health hospital, which I hadn't appreciated before.”

12. Professional support is needed for families to support children & young people effectively – more than just initial one-off support but on an on going basis during treatment, especially where there are complex needs or challenging behavioural issues Parents and carers should be involved, as experts, in treatment decision-making alongside professionals WHAT PARENTS SAY - LEADERSHIP & SERVICE DEVELOPMENT

13. If the Transition to AMHS is disjointed, parents and carers are often left picking up the pieces with the CYP A holistic approach to services is welcomed WHAT PARENTS SAY - LEADERSHIP & SERVICE DEVELOPMENT

14. Session By Session Measures “These have not been explained to me, they may have been explained to my child, but not me – I just understood that CAMHS worker needs to complete them.” “You have just explained ‘ROMS’ to me and why they use them, I can't recall this ever being explained so in that way they have never made much sense to me - before it made no sense just more paper filling”

15. There are vastly different experiences felt by parents who trust or do not trust the qualifications & knowledge of practitioners Communication with parents as part of the support provision for CYP is a big factor in how a parent experiences a service WHAT PARENTS SAY - WORKFORCE DEVELOPMENT

16. Parents are willing to engage with active local parent carer forums or dedicated CAMHS parent groups & also sit on local boards Many parents welcome the opportunity to take part in consultations There is a sense that if CAMHS just actively listens to parents, things will improve Signposting to additional support services is welcome WHAT PARENTS SAY – engagement METHODs

17. Simple mechanisms can be helpful, eg leaflets, online signposting to other support, clear explanations WHAT PARENTS SAY - engagement METHODs

18. Understanding our needs “Sometimes, I think they make a judgment about our life without knowing the facts – CAMHS need to understand what our needs are”

19. Parents Helpline 0808 802 5544 • Booklets for parents, professionals and children and young people • www.youngminds.org.uk • Training and consultancy matthew.daniel@youngminds.org.uk youngminds