Last updated: 2 September 2014
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
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)
480 registrations received
Female 95:5 Male
9% BAME or Asylum seekers
18% parents with disabilities
4 focus groups held (South East, South West, BME & Disability focus)
36 telephone interviews
15% BAME or Asylum seekers
32% parents with a disability
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
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)
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
“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”
“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?”
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“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'”
“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””
“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.”
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“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.”
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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?
“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.”
“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?”
“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 ?”
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
“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”
“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”
“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" ”
“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 support3. That providing an environment that is accessible and
friendly is extremely important4. 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 involved5. To offer information and support networks to the
young people, carers and family members6. To provide a personalised service – everyone is
different. Telephone support/mentoring/support groups for people.”
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“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”
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.
“There is confusion between Fraser guidance (Gillick Competence), 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.”
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
“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
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
“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.”
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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
“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.”
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“Confidentiality doesn't mean exclusion (eg not telling the parents anything) family participation
won't compromise confidentiality.”
“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”
“Sometimes, I think they make a judgment about our life without knowing the facts – CAMHS need
to understand what our needs are”
“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?”
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“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.”
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“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.”
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WEB:www.youngminds.org.ukEmail: [email protected]: 0207 089 5050
PARENTS HELPLINE: 0808 802 5544