The National Autistic Society, UK has called on NHS England and Government to take urgent action to reduce unacceptable waiting times for autism diagnosis stating that waiting times for autism diagnosis is pushing families to crisis point.
The charity said that lack of consistent collection and monitoring of diagnosis waiting times in England is making it impossible to measure progress and harder to improve services.
The charity has sent out letters signed by 11,627 people including prominent autism experts Professor Simon Baron-Cohen and Dr Judith Gould calling on the government and NHS to reduce diagnosis waiting times. The letters have been sent to Chief Executive of NHS England, Simon Stevens, and the Health Secretary Jeremy Hunt.
The letters call on NHS England to act by recording and publishing key data on local NHS performance and adopting a standard so that no one waits longer than three months for a diagnostic appointment.
The charity says that without a diagnosis, people on the spectrum are often left without support for years and fall into crisis, developing mental health problems such as anxiety and depression. This has a knock-on effect on families, who have to deal with the additional, sometimes overwhelming, strain of looking after their loved ones without help and, often a full understanding of their needs.
Guidance from the National Institute of Health and Care Excellence (NICE) says that there should be a maximum of three months between being referred for a diagnostic assessment and a first appointment. But academic research from City University London and Goldsmiths University of London indicates that this timetable is not being met across the country, with many people waiting years for a diagnosis.
A new survey has found that the average delay between first contacting a healthcare professional and receiving a diagnosis was 3.6 years with 84 per cent of the respondents claiming that the diagnostic process was stressful, and over half reported being dissatisfied with the diagnostic process.
Another survey of 1047 parents of children on the autism spectrum found that the average delay between first contacting a healthcare professional and receiving a diagnosis was two years, which was, on average, over five years after concerns first emerged. As many as 40 per cent were dissatisfied with the diagnostic process, which was associated with delays in diagnosis and a lack of post-diagnostic support. 29 per cent respondents said that they sought help privately.
The charity is calling upon NHS England to collect, publish and monitor key information on how long people are waiting for diagnosis, and how many people are known to their GP to have autism. The charity is also calling on NHS England to stipulate that there should be a maximum three-month wait for a diagnostic assessment within new waiting times standards being developed; and the Government to write timely access to autism diagnosis into its mandate to NHS England.
