Organisation Backgrounda

Diverse Cymru promotes equality for all. We believe that we can work together to challenge discrimination in all its forms and create an equitable future for the people of Wales.

Diverse Cymru aims to make a real difference to people’s lives through delivering services that reduce inequality and increase independence; supporting people to speak for themselves and to connect with decision makers; creating opportunities for participation and development; raising awareness of equality issues; and inspiring people to take action against inequality.

Our current services include direct payment, self directed and independent living support for both adults and children in Carmarthenshire, Pembrokeshire and Ceredigion; a BME mental health befriending and community support service in Cardiff and the Vale of Glamorgan; family support, welfare benefit, income maximisation, tribunal, and general advocacy in the Vale of Glamorgan and for families with a disabled child in Cardiff. 

We produce information resources on a wide-range of equality issues, including for people affected by inequality across all protected characteristic groups and information for organisations and service providers; provide a conduit for service user voices to decision-makers throughout Wales through our engagement work; run citizen involvement projects for people from protected characteristic groups and carers; provide consultancy services on integrating equality in organisations and equality impact assessments and deliver a range of equality-related training courses. We facilitate forums and groups that work on various issues, from improving disability access to equality impact assessments. 

This submission focuses specifically impacts on people from protected characteristic (equality) groups. We would welcome any opportunity to assist with the development of specific work programmes and actions, and with engaging service users in future. We are happy for our submission to this inquiry to be published and would be happy to give further evidence, orally or in writing, if the committee would like.

Inquiry Submission

Specialist CAMHS

1. Families and children accessing our advice service for families with a disabled child are reporting that it is increasingly difficult to access CAMHS.

2. They particularly express frustration that the eligibility criteria for receiving CAMHS services are not clear or transparent. They report not being provided with information on why their child may not be eligible and are not being provided with information on any alternative support.

3. Those that do receive a referral to CAMHS are also finding that they receive a diagnosis, which is helpful, but there is a lack of treatment and support after diagnosis for both parents and children.

4. These issues are particularly prevalent for children and young people with AD(H)D, developmental delays and Autistic Spectrum Disorders.

5. Parents are also reporting that they feel they are not listened to, are judged and feel unsupported by CAMHS when they do access services.

6. These barriers are causing mental health issues for parents and siblings and having an extremely negative impact on the whole family.

Transition

7. Parents accessing our service report that transition from primary to secondary school is a particularly difficult time for them and their children, including siblings.

8. Many parents report that during this time of upheaval, including puberty, some children with Autistic Spectrum Disorders are displaying mental health symptoms from depression through to aggression.

9. They report that they are offered little or no support from mental health services, other health services, or schools, aside from medication.

10. They report that schools are unable to deal with these symptoms appropriately, and in some cases the only solution put in place has been to exclude the child and disrupt their education.

11. We have seen no evidence of support or education plans being in place for these children and how children are supported appears to vary purely based on the school they attend.

12. There is little evidence of the LEA, schools and CAMHS working together to achieve the best outcomes possible for the child.

13. One case study we have evidences these issues.

A nine year old boy with severe anxiety, ticks, speech and language difficulties was supported by CAMHS. His Mum had requested help through his mainstream school and despite repeated requests via CAMHS felt that he was repeatedly let down throughout the process. Despite repeated Multi-Disciplinary Team Meetings at no time did CAMHS ask to see examples of the child’s academic work. Had they done so it would clear the child was at least two years behind his peers, as could not write his own name or write on a line. 

The school and LEA SEN Team missed opportunities to provide support and this has led to greater anxiety and distress for the child. Eventually the parents, with the advice and support of Diverse Cymru’s Advocacy Service, secured a transfer to another school and the child’s difficulties are now recognised. In addition the Advocacy Service attended Multi-Disciplinary Team Meetings and placed examples of the child’s work before CAMHS who were clearly shocked at how far behind the child had fallen. Pro-active partnership working and different bodies exchanging information could have prevented the suffering and anxiety that both the child and his parents have suffered.

Recommendations

14. We recommend that the following actions are taken to address the issues raised above:

1. Publish clear criteria for CAMHS eligibility in plain language.

2. Provide copies of eligibility criteria to all parents who request a referral to CAMHS.

3. Provide information on local support and services available in the community proactively to all parents and children and young people presenting with mental well-being issues.

4. Ensure that there are support services and treatments available for children and young people referred to CAMHS, not just medication.

5. Train CAMHS staff in the impact on parents and families and supporting and involving families.

6. Ensure that support services are available for siblings and parents/guardians of children with mental ill health.

7. Extend the provision of key workers to support disabled children and young people through transitions between schools and from children’s to adult services to children with Autistic Spectrum Disorders.

8. Develop multi-agency teams and ALN/support plans for every child diagnosed with learning disabilities or mental health conditions.

9. Ensure that schools, local authorities, and health services work together to achieve the best outcomes for every child diagnosed and avoid exclusions.