CAMHS Survey summary analysis

CAMHS Survey to parents re additional support Summary analysis Pub. 6th January 2018

Context 18th October 2017 – SEND Family Voices sent an extra newsletter to their database (at that point 600+) with the following request on behalf of Richmond CCG. CCG = Clinical Commissioning Group CAMHS = Children’s & Adolescent Mental Health Services This extra news may not be for everyone – but if you have a child or young person with anxiety, depression, autism, adhd or any kind of mental health or neurological condition, read on…

So… what’s this all about?

In Richmond (and around the country) CCG’s are continually refreshing and reworking their Transformation Plans to make the best use of the available funding.

With resources getting scarcer, it could be worth providing parents and carers with more skills to help them support themselves, their child or their young person.

This very short survey asks What Would Help You? And comes from Richmond CCG. NB: The survey deliberately mirrored a similar survey sent to professionals working with children and young people with mental health needs. This is to allow the CCG to conduct an analysis of similarities and differences.

Summary (of the summary) The survey received 43 responses within 10 days.

Most parent/carers (who responded) would welcome more help and learning.

Especially co-learning with other parents and professionals.

This cannot replace direct specially trained professional help.

Most important was helping our young people to: • develop self-confidence and self-esteem • be more resilient • manage anxiety

ie young people with SEND will always have challenges; being disabled is difficult. Helping young people to cope is the best help we can offer.

www.sendfamilyvoices.org

Results The survey was open from 18th October to 28th October and received 43 responses within 10 days.

NB: There is an appendix on page 5 which summaries the CAMHS Chats with families, held in Summer 2017.

The Questions Q1 Would you like to develop your own skills in order to understand your child or young person’s mental health needs?

Overwhelmingly the answer is Yes (36 respondents). 3 respondents answered No. 4 respondents were unsure.

Q2

From this list of subjects, what would you like to know more about?

Each subject asked whether it was Not important, Important or Vital.

• Impact of trauma (physical, mental or emotional) • Building resilience (ability to cope) • Depression • Eating disorders • Impact of personality disorders • Gender identity and trans-awareness • How to manage bullying • Promoting good mental health, in children aged 0-10 • Understanding anxiety • Self-harm and suicide • Impact of separation and bereavement • Improving confidence and self esteem Top 3 (Vital) 1. Understanding Anxiety received - 37 responses (86%) 2. Improving confidence and self-esteem – 37 responses (86%) 3. Building resilience (ability to cope) 34 responses (79.1%) Next 3 (Vital) 1. Promoting good mental health, in children aged 0-10 – 28 responses (65.1%) 2. How to manage bullying – 24 responses (55.8%) 3. Depression – 23 responses (53.5%) 4. Self-harm and suicide – 23 responses (53.5%) Not Important The item most often considered Not Important was Gender identity and transawareness with 27 responses (62.8%). However, there were still 6 responses (14%) that cited this as vital.

www.sendfamilyvoices.org

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Q3 What haven’t we thought of? What might you find helpful?

This was an open question and there were 19 written responses to this question.

Early Intervention – or perhaps this could be better described as ‘Forethought’?

9 (5+4) responses could safely be grouped as requests for early intervention; where mental health difficulties quickly moved to suicide, self-harm, substance abuse (alcohol, drugs), sleep problems or other conditions (eg encopresis) (+4) Linked to this, and the author has defined the items below as ‘early intervention’: ‘managing pain on a daily basis’ ‘sex and relationships’ (a proactive approach, rather than reactive) ‘managing anger’ ‘peer pressure’

“The impact of needing to control everyday life is far-reaching” And 3 were queries as to whether the CCG were expecting parents to ‘do their job for them’ 3 were requests to specifically cover adhd, one was a very informed response on executive functioning (ie it read as though from a professional in the field, rather than a parent of a c/yp with adhd).

2 raised questions as to the rigour of equipping parents, ie evidence based training and taking a coaching style 2 requested help for those that are non-verbal. How do you (parent or professional) successfully work with this without resorting to medication (suggested as the easy option?)

Q4

How would you like to receive training or development?

41 out of 43 respondents answered this question. The most popular options were: • Joint workshops with other parents • Joint workshops with other professionals In descending order, these were followed by: • Website (read as you go) • E-learning (prompted programme) • Reflective groups There was a slightly higher preference for daytime (school hours) over evenings.

There were also 11 written responses to this question.

6 responses questioned the timing, with ideas including weekend training and ‘live’ e-training. All these responses favoured the opportunity to communicate directly with other parents.

“I would be willing to try any of these to help my son”

www.sendfamilyvoices.org

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3 responses questioned whether the CCG were asking parents to do their job for them and/or that schools should be doing more via PSHE (Physical, Social, Health and Environment) which is intended to compliment the academic programme.

1 response asked if this would cover young people over the age of 18.

1 response requested adhd and training on the co-morbidities (linked conditions)

Q5 Would you like to develop your own skills in order to understand your child or young person’s mental health needs?

This is a deliberate repeat of question 1.

The answer remained Yes, with an increase of 1 (to 37 respondents). Likewise, there was an increase of 1 in respondents answering No (to 4 respondents). 2 respondents were unsure.

There were 11 written responses to this question.

5 responses questioned the risk of asking parents to replace professional and school interventions. “with the best will in the world, a child with specific problems needs the help of a professional” 3 responses stated that there was always room to learn and receive help in dissecting behaviour that was teenage related vs disability related 2 responses questioned (again) the thinking behind equipping parents, ie evidence based training and taking a coaching style “…have grown in understanding with my child, but there is always room to learn more” “…helping my young person to grow into an adult and be less needy of me” 1 response requested workshops for parents on adhd

www.sendfamilyvoices.org

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Appendix Parent/Carer meetings on CAMHS experiences – Summer 2017. pub. August 2017

Meet the Commissioners (aka CAMHS Chat) 1. Is a diagnosis important?

Yes – a diagnosis provides respect for the individual and their human rights; enabling the family, and those around the child/young person to seek appropriate help, support and therapies 2.a) What worked well about the process?

Support outside of CAMHS can be good (eg the educational psychologist or the school SENCo).

2.b) What didn’t work well?

Painfully long waiting times for assessments, which in turn affected the entire family as the child, young person and family are in ‘no-mans-land’. Families would like a transparent, local service.

3. What are the benefits of diagnosis (if any)?

Families experience a huge sense of relief and clarity; it is the beginning of understanding.

Where the primary diagnosis is ADHD – the option of medication is often a significant benefit (for the child/young person and their family) 4. After diagnosis, what changed?

Most significant is the security and protection of the child/young person’s human rights (eg disability discrimination, the Care Act, Children’s & Family Act) For the young person, there is often an improvement in self-esteem and selfawareness. Families also report their access to other services is improved.

5. What services did you feel able to access whilst waiting for a diagnosis? and Who helped you?

Answers were often ‘no-one’ or voluntary sector Peer Support groups were named.

Educational Psychologists also received praise for their insight and practical suggestions.

6. …and what else could have helped and when? (What would you like to see for the future?)

A consistent observation was that understanding and helps begins at home. If someone comes to your home – and offers help – direct help - this makes all the.

Families would like streamlined, transparent, functional local services – with a single point of contact or coordinator.

The transition service between children’s and adult’s mental health services is unclear, worrying and just awful for families.

Everyone would like more understanding and less judgment from schools; less sanctions and exclusions.

www.sendfamilyvoices.org

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