parents say: emerging key themes camhs & parent participation

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Last updated: 2 September 2014

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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 - PowerPoint PPT Presentation

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Page 1: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

Last updated: 2 September 2014

Page 2: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 3: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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)

Page 4: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION
Page 5: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

480 registrations received

Female 95:5 Male

9% BAME or Asylum seekers

18% parents with disabilities

Page 6: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

4 focus groups held (South East, South West, BME & Disability focus)

36 telephone interviews

15% BAME or Asylum seekers

32% parents with a disability

Page 7: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 8: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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)

Page 9: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 10: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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”

Page 11: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 12: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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'”

Page 13: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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””

Page 14: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 15: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 16: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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?

Page 17: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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.”

Page 18: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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?”

Page 19: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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 ?”

Page 20: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 21: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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”

Page 22: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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”

Page 23: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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" ”

Page 24: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 25: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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”

Page 26: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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.

Page 27: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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.”

Page 28: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 29: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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

Page 30: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 31: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 32: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

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

Page 33: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 34: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“Confidentiality doesn't mean exclusion (eg not telling the parents anything) family participation

won't compromise confidentiality.”

Page 35: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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”

Page 36: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“Sometimes, I think they make a judgment about our life without knowing the facts – CAMHS need

to understand what our needs are”

Page 37: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 38: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 39: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

“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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Page 40: parents say: EMERGING  KEY THEMES  CAMHS & PARENT PARTICIPATION

WEB:www.youngminds.org.ukEmail: [email protected]: 0207 089 5050

PARENTS HELPLINE: 0808 802 5544