Press release: Autism assessment waiting times

Central Scotland MSP Monica Lennon has called for urgent action from the Scottish Government after her research revealed that more than 3,500 children in Lanarkshire are waiting for an autism assessment.

The Scottish Labour and Co-operative representative submitted a Freedom of Information [1] request to NHS Lanarkshire after the issue of significant delays for an appointment with the neurodevelopment team were highlighted by a constituent.

At the time of the response, 3,667 children were on the list. Shockingly, one child had waited 1,032 days.

Autism is a lifelong developmental disability which affects how people communicate and interact with the world. Around one in 100 people are on the autism spectrum.

Monica said: “It is unacceptable for young children to have to wait this long for an autism diagnosis. Families are right to expect better support and I have asked the Scottish Government to take urgent action to help NHS Lanarkshire improve access to neurodevelopment specialists.

“My office has offered support to numerous families with issues surrounding autism, including one mother from South Lanarkshire who told us recently she felt she just wasn’t being taken seriously as she desperately sought help for her young son.

“She felt she had been going around in circles trying to get an appointment and dealing with the complaints procedure and had nowhere else to turn.

“When I raised her case with the Scottish Government, we were simply passed the contact details for a co-ordinator at a local health centre.

“It seems you either accept a lengthy wait for help or be sent on a wild goose chase, and it simply isn’t good enough.”

She continued: “I am told there are no staffing vacancies within NHS Lanarkshire’s community paediatric service, so you have to ask – why are there so many children stuck on waiting lists with no appointment in sight in Lanarkshire?

“And does the Scottish Government think this is an acceptable way to treat families who are desperate for support? If SNP ministers are serious about all children having the best start in life, this must include children who are autistic or neurodivergent.”

The constituent, who wants to remain anonymous, said: “I am really struggling to support my little boy appropriately and access services to meet his needs. Every day is a challenge, made worse by the difficulties of navigating the NHS.

“It makes me wonder how other more vulnerable families are managing to access services and I am aware of many families who are waiting over four years to be seen.

“I have followed the complaints process locally and the complaint has been upheld however I feel there has been a lack of action.

“I am aware of the current pressures within the NHS however I feel that the issues of assessment for neurodevelopment disorders and appropriate support are really not being taken seriously.”

ENDS

Notes to Editors:

  1. FOI response copied below –

Further to your enquiry of 24 March 2022 under the Freedom of Information Act, please find our response below.  In your request you asked for the following information:

How many children are currently on the waiting list for the community paediatric service in NHS Lanarkshire? Out of this list, what is the longest that a child has been on the list? 

I regret to advise that I am unable to provide you with precise figures as this information is not centrally recorded. To find this information would require a manual check of patient records. This information gathering would exceed the charging threshold prescribed in the Regulations made by the Scottish Ministers which constitutes a ground of exemption in terms of Section 12(1) of the Freedom of Information (Scotland) Act 2002. 

To assist, I can advise that the service estimates the number of children on the waiting list as approximately 4000 and the longest wait as approximately two years.

How many children in NHS Lanarkshire are waiting on an appointment with the neurodevelopmental team for an autism assessment? 

3667.

Out of this list, what is the longest that a child has been on the list? 

1032 days.

How many vacancies are there for staff within the community paediatric service in NHS Lanarkshire at present? 

None.

At which level are these vacancies? How long have these vacancies existed?

Not applicable. 

Please note that the community paediatric service does not include the children’s neurodevelopmental service.