Pulse check report: neurodiversity and health and care services

Download (PDF 546.95 KB)

Summary of report content

Healthwatch Kingston upon Thames report on a survey of neurodiverse adults in Kingston carried out in April 2021. A total of 46 people responded to the survey and a further four people were interviewed over the phone as a requested reasonable adjustment.

More than three in give said they found it difficult or very difficult to access the care they needed.  Just over half were dissatisfied or very dissatisfied with their care. A fifth needed aftercare but this wasn’t available.

Neurodiverse people in Kingston said they want to be accepted, understood and get the right support. A dominant theme was the pressing need for services to provide useful, reasonable adjustments.

Three in ten respondents had used their autism and ADHD services for assessment, diagnosis and/or treatment. The waiting list for assessments is long. Some described their deteriorating mental health while waiting. Several people felt compelled to pay for a private diagnosis because of assessment waiting times.

Many respondents reported experiencing mental distress. Some people faced long waits for formal diagnostic assessments or therapies. Others felt abandoned or alone after diagnoses because of a lack of post diagnostic support.

Autistic/neurodivergent carers of children with similar conditions told us they face a double burden of stress and anxiety managing their own and their children’s conditions.

The report looks at people’s experiences of different mental health services.  GPs do not make the reasonable adjustments necessary to ensure their service is accessible to neurodiverse patients.

The report contains 10 recommendations.

Would you like to look at:

General details

Local Healthwatch
Healthwatch Kingston upon Thames
Publication date
Date evidence capture began
Date evidence capture finished
Key themes
Access to services
Communication with patients; treatment explanation; verbal advice
Health inequality
Caring, kindness, respect and dignity
Service organisation, delivery, change and closure
Waiting for appointments or treatment; waiting lists for treatment

Methodology and approach

Was the work undertaken in partnership with another organisation?
No
Primary research method used
Survey
If an Enter and View methodology was applied, was the visit announced or unannounced?
N/A

Details of health and care services included in the report

Details of health and care services included in the report
General Practice (GP)
Counselling/Psychotherapy/ Improving Access to Psychological Therapies (IAPT)
Hospital-based psychiatric care
Child and Adolescent Mental Health Services (CAMHS) and Targeted Mental Health in Schools Services (TaMHS)
Community Mental Health Team (CMHT) and specialist MH services
Adult social care, including care packages and social workers

Details of people who shared their views

Number of people who shared their views
46
Age group
18 to 24 years
25 to 49 years
65 to 79 years
Gender
Women
Men
Is the gender identity of people in the report the same as the sex they were assigned at birth?
No
Ethnicity
Asian / Asian British: Any other Asian / Asian British background
Black / Black British: Any other Black / Black British background
Mixed / Multiple ethnic groups: Any other Mixed / Multiple ethnic groups background
Any other ethnic group
White: Any other White background
White: Irish
Sexual orientation
Not known
Pregnancy/maternity
N/A
Types of disabilities
Learning disability or difficulties
Does this report feature carers?
Yes
Did you find this attached report useful?
0
No votes have been submitted yet.