parents say: EMERGING KEY THEMES CAMHS & PARENT PARTICIPATION

parents say:EMERGING KEY THEMES CAMHS & PARENT PARTICIPATION Last updated: 2 September 2014

CONTEXT • NHS England have contracted YoungMinds to develop a toolkit to support the implementation of Parent Participation in CAMHS embedding CYP IAPT principles • Over 480 parents have registered interest to be involved in the development of the toolkit • Over 60 have committed to attend focus groups/interview & returned supplementary details of their experiences

CONTEXT • Initial evidence gathering took place between April – August 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 (36 telephone interviews & 4 focus groups)

Geographical spread of parents

Wider interest group • 480 registrations received • Female 95:5 Male • 9% BAME or Asylum seekers • 18% parents with disabilities

Core group • 4 focus groups held (South East, South West, BME & Disability focus) • 36 telephone interviews • 15% BAME or Asylum seekers • 32% parents with a disability

Five themes • 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 • Engagement Methods

WHAT PARENTS SAY - COMMUNICATION • 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 • 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 • There is a knock-on affect in other areas of children and young people’s lives

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”

Communication “CAMHS need to look at parent expectations - more time is needed to explain and help the parents understand - parents need time to come to terms, perhaps grieve for their child's situation - why and how have CAMHS become so entrenched on diagnosis?”

Communication “If CAMHS support parents early in treatment as part of the network /system that can help youngsters it can help scarce resources go along way and really help deliver 'early intervention'”

Communication “After 2 years of trying to get help for my daughter, I felt very alone with her problems. So at the time of the assessment, I was emotional. When I saw that team they said to me -as though I was part of the problem - “If you’re so emotionally unstable it is any wonder your daughter is struggling – I felt completely judged and misunderstood””

Communication or leadership “Early contact with CAMHS can make such a huge difference to all future experiences. Let’s get it right to begin with and then build on the partnership with parents’ support to help the child.”

Methodology “We are passionate about getting CAMHS right for our child and also we want to get it right for other parents so as to help other children.”

WHAT PARENTS SAY - ACCESS AND EQUALITY & DIVERSITY • 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?

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.”

Building Resilience “If we as parents do not understand how can we guide our children, how do our children feel when the people they lean on the most (the parents) are as confused and lost as the child?”

Communication: Self Referral “Why can’t we self refer? We know our children- it would be really helpful when I'm put onto a waiting list I will be told how long I will be on that list for – is it a month? 3 months? 6 months? A year ? Will I ever be seen ?”

WHAT PARENTS SAY - LEADERSHIP & SERVICE DEVELOPMENT • Professional support is needed for families to support children & young people during treatment, especially where there are complex needs or challenging behavioural issues. Everyone wants the same outcomes. • Parents and carers should be involved, as experts, in treatment decision-making • If the Transition to AMHS is disjointed, parents and carers are often left picking up the pieces with the CYP

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”

Communication: Self Referral “We know our children, we see the changes in them - at that point we should be able to refer ourselves, and if its not a mental health problem then our minds will be at rest and if it is then we know something will be done. I would much rather do it that way, than have to be relying on someone else to translate the information, hoping they do it right and then having to wait if something will be done – it all takes too long and its not a very reliable process”

Service leadership “My initial experience of CAMHS for the first few months was like this:I had to battle to get my daughter there, we would then be told there is no slot for therapy or family therapy, however her weight is still decreasing so I will see you in a fortnight.”"Today was a battle to get her here and it's going worse she will shut down so then what do I do?"Take her to A&E" ”

Communication “Having spoken to some parents who have been in a similar situation there were some common areas of frustration – for example: 1. Months between appointments without support is not acceptable in vulnerable young people 2. That the whole family is affected and needs support 3. That providing an environment that is accessible and friendly is extremely important 4. To not have to repeat the same information over and over again because there is so long between appointments. Information should be shared to relevant people involved 5. To offer information and support networks to the young people, carers and family members 6. To provide a personalised service – everyone is different. Telephone support/mentoring/support groups for people.”

Working with schools “There should be more overlap with schools -CAMHS could have a greater presence in schools, be on hand to support children who need it and also support the school to help the children understand mental health”

WHAT PARENTS SAY - LEADERSHIP & SERVICE DEVELOPMENT • A significant emerging issue is the tension between confidentiality, information sharing and legal rights and duties. • This tension is sometimes used as a tool to exclude parents from the treatment and support of their child. However they continue to be parents throughout whether included or not.

CONFIDENTIALITY VS SHARING INFORMATION “There is confusion between Fraser guidance (GillickCompetence), the Mental Health Act, the Child and Families Act and NHS consent under the age of 16, it is a minefield and I don’t think staff are aware and become confused and fearful about the complexity of legislation which is in place.My 13 year old was not geared to making such fundamental decisions at 13 in relation to compromise and negotiation and consequences but in a mental health settings they put them in the driving seat and then don’t share any decision making with me.”

WHAT PARENTS SAY - WORKFORCE DEVELOPMENT • 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

Communication “They use so many acronyms and they are not helpfulWe received a letter for my daughters appointment which was signed off.. the therapist name and then the therapists job title and then, CYPIAPT trainee, CYPIAT CAMHS ……Partnership, Name of the CAMHS service and then a string of professional qualifications I don't know what all that means but it's daunting - the role and the name of the service would be sufficient

Children and Young Peoples Mental health Services needs More money to make it an equal service to physical health and that money needs to be invested in…-Reduction of waiting lists-Increasing the skills set of the CAMHS staff to provide them with greater skills and knowledge on issues such as:Anxiety, Trauma, Eating Disorders, Emotional disorders, emerging personality disorders, ASD, Self Harm, ADHD, Sensory Processing Disorders, CO- morbidity -More therapist to cover the above and family therapy- Using different interventions including web technologies-Ensuring schools really embed Mental Health and work much more closely with CAMHS

Co- Morbidity “I wish the CAMHS staff I had seen knew a bit more about co-morbidity, especially mental health implications with things like ADHD and Autism etc. Pediatrics will say that is a CAMHS issue and CAMHS will say it’s a pediatric issue, but that is not helpful to me or my child, we need support around the mental health problems.”

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

Communication “Why not 'train' the parents in resilience so they can give better support at home - they could even include CBT and mindfulness - we know many young people struggle to access / attend therapy.”

CONFIDENTIALITY “Confidentiality doesn't mean exclusion (eg not telling the parents anything) family participation won't compromise confidentiality.”

Developing Peer Mentoring “I do talk to other parents informally about CAMHS, it would be good though if this was properly organised ( as a peer mentoring scheme or support group) as sometimes it becomes a bit too much”

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”

Understanding our needs “As a parent I do worry about my child and I guess that’s the same for many parents, as we are implicitly carers. That becomes much more explicit if our child develops complex mental distress at levels beyond our capacity as parents to manage. The parents’ / carers’ needs really need to be understood - what impact is caring having on their own lives and on their families’ lives? What is the impact on their own mental health, their employment, their family relationships, the relationships with their child? I wonder if that is really understood by CAMHS?”

Reducing Stigma “What helped me was attending a course about mental distress, the more I knew the less afraid I felt. I regained a sense of control as I understood what was going on.” 38

Methodology – Communication with Parents “To really engage with parents and carers CAMHS have to want to listen to what parents and carers are saying, listening non defensively with a desire to build bridges, there will be a mix of positive and negative experiences but their needs to be a desire to move forwards with action taken.”

youngminds WEB:www.youngminds.org.uk Email: ymenquires@youngminds.org.uk PHONE: 0207 089 5050 PARENTS HELPLINE: 0808 802 5544

parents say: EMERGING KEY THEMES CAMHS & PARENT PARTICIPATION