Extract from the notes of a focus group held on 1st May 2012 in collaboration with the Angels Support Group*to enable parents and other carers to discuss their experiences of the CAMHS Specialist Clinics.

*Angels is a parent led voluntary organisation in North Herts which supports parents and carers of children with Attention Deficit Hyperactivity Disorder and/or Autistic Spectrum Disorders.

(14 parents attended – these were all parents of children with an Autistic Spectrum Disorder)

► / Parents’ concerns about their experience of CAMHS
a / There needs to be greater clarity about the criteria for a referral to the Specialist Clinics and parents need realistic information about what they can expect from the service and what are the likely outcomes.
b / There needs to be more effective working between agencies – one child had been referred to the Communication Disorder Clinic where there was an 8 month waiting list. CAMHS needed the outcome of that assessment before they could undertake their own assessment which left the parent without support or information about how to deal with behaviour problems.
c / Parents are confused about referral processes, they do not understand why a referral to the Challenging Behaviour Psychology Service must go through CAMHS nor why a child cannot be referred to both the CAMHS clinic and the Child Development Centre at the same time, particularly where there are also physical development issues. Parents feel that these processes create a barrier to a child and their family being able to access the support needed.
d / .Parents need support and guidance – particularly when there is a delay in accessing assessment or treatment.
e / Clinic staff often appear to disregard the parent’s knowledge of the child and also to misinterpret or misunderstand autistic behaviours – parents provided a number of examples where staff had failed to recognise that obsessive behaviours and rituals were the child’s means of managing stress and anxiety and important to them. Clinician’s advice to ban such behaviours rather than to establish manageable boundaries would only make the situation worse.
f / Parents often felt judged as their own parenting skills were inadequate or the cause of difficulties. Single parents in particular felt that
► / Parents’ positive experiences with CAMHS
a / One parent whose child was diagnosed about 10 years ago at the age of two years felt she had been given appropriate support and advice.
► / Parents’ general comments/suggestions
a / Not all staff has a good understanding of Autism and the way the autistic behaviours/rituals can affect the young persons Mental Health.
Suggestions for improvement
  • Need for specialist staff to work with young people who have a diagnosis of autism.
  • Better training for all staff, trainers to include parents/carers who have lived with young people who are on the autistic spectrum

b / Clinics need to easily accessible – Stevenage clinic does not have adjacent car parking andis held upstairs (wheel chair access is available via library (when open) next door).
Suggestions for improvement
  • Providing premises where parking is available reducing the stress of getting to an appointment when the young person is uncooperative.
  • Offering Clinics once a month in local locations. e.g. GP surgeries, schools (although there may be stigma issues associated with schools)
  • Offering an initial home visit where young person feels safe

c / Clearer information is needed about CAMHS services and the expected outcomes
Suggestions for improvement
  • An Information pack which includes –
how the referral system works
where families can access help /support
d / Better support for Parents/Carers who need to be heard and believed. They also need the opportunity to talk to a CAMHS worker without their child being present – it can be difficult to discuss what appear to be negative or critical issues with the child present.
Suggestions for improvement
  • Monthly drop in where parents/carers can access support and advice and have a private discussion
  • Helpline for support and advice available 24/7
  • It should be acknowledged that young people can behave differently in different environments, e.g. home and school.

Roma MillsPage 128/12/2018