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?”
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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.”
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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.”
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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.”
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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 (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.”
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 helpful
We 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.”
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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.”
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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?”
37
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.”
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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.”
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YOUNGMINDS
WEB:www.youngminds.org.uk
Email: ymenquires@youngminds.org.uk
PHONE: 0207 089 5050
PARENTS HELPLINE: 0808 802 5544