Lack of services for Croydon’s autistic children drives them into harm say parents
A lack of effective support services for Croydon’s autistic children can drive them into harm, leading to decline of physical and mental health, according to a report published today by Healthwatch Croydon.
The report Autism: The Experience of Children and Young People in Croydon spoke to parents and carers on their experiences of getting their children referred and supported, as well as recommendations on how they could receive better support.
Parents said that they have to suffer long waiting times of up to 18 months to get a referral by their doctors, much longer than similar services being provided in neighbouring Lewisham, Bromley and Surrey. Once referred, they have to fight to get their child’s condition recognised, particularly at schools. These delays in access costs the NHS more, as for some, conditions become more serious, and circumstances deteriorate sometimes leading to hospital treatment and unnecessary stress for child and carer.
Even when children are referred, assessments can be too complicated, leaving people incorrectly assessed and feeling insecure. Once assessed, the lack of integration in services between GPs and social services has a massive effect, as services can drop away when a child moves from one provider to another. Gaining access to a social worker can also be difficult, with one family calling 10 times in a day without making contact.
As a result, parents do not feel supported and some struggle under the burden. This lack of support can lead to decline of physical and mental health, with some teenage children self-harming, binge-eating and experimenting with alcohol and drugs.
The report’s recommendations are:
Increased GP training: Experiences at different GP practices vary considerably, with children and parents stating that there appears to be no consistency of process. GPs may benefit from autism refresher courses, plus wider training, including communication and how to involve children better in decisions about themselves.
Better information: Families say that there is a lack of information on the diagnosis process and time frame. This is perhaps due to the long waiting lists and multi-provider arrangement. If possible, families should be kept up-to-date and given relevant information. A lot of families say they are often in the dark with lack of support.
Reducing waiting lists: Children on the waiting list may be jumped at any time by those who become acutely unwell. What systems can be put in place to avoid this?
Lack of trust: Parents are frustrated and not confident that their children will get the support they need. Lack of trust is an issue, so constructive dialogue is needed to offer reassurance. If clinical services are full, is there an effective alternative?
Confusion about support services: Many families are confused about services and support options, and would like much more information, particularly on which services exist, eligibility criteria and how to gain access. A one-stop-shop for information, in accessible formats and widely publicised, would provide much needed clarity.
Difficult access to social care: Access to social workers and other social care services such as behaviour management can be difficult, leaving families with little or no support, when they need it most. Telephone access in particular needs to be improved, with the ability to leave messages, should staff not be immediately available.
Healthwatch Croydon held a public meeting yesterday, 15 March 2016, to hear further experiences and discuss suggestions from parents, carers, teachers, and support workers. Cllr Andrew Rendle, Croydon’s Autism Champion, spoke at the event and thanked Healthwatch Croydon for the report and opportunity to discuss ideas for better services emphasising the need to be creative in seeking improvements. Next week, Healthwatch Croydon will publish a further recommendations report based on these discussions.
Charlie Ladyman, CEO of Healthwatch Croydon, said “This report illustrates the serious work that needs to be done to give these children the best chance in life. Waits of 18 months have a detrimental impact on the child’s development, with consequences for family, carers, and indeed society as a whole.
“We welcome the CCG’s planned redesign of the service particularly with 20% increased funding for Children and Adolescent Mental Health Services and a commitment to reduce waiting lists. However, this needs to be supported by extra resources for GP training and social support as well as better information and processes to build trust. Croydon’s autistic children and their families urgently need clear, accessible and consistent support as other London boroughs receives”.
Pictures above: Cllr Andrew Rendle, Croydon’s Autism Champion; Charlie Ladyman, CEO of Healthwatch Croydon and Linda Townsend, Family Support Worker, National Autism Society Croydon; below: discussions around the tables