‘These children are simply being forgotten’ - call for change as 1700 still waiting for neuro developmental conditions assessment in the Highlands
Hundreds of parents and carers across the Highlands are now calling for a change in how autism, ADHD and other neurodevelopmental conditions are serviced after latest figures from NHS Highland revealed that 1700 children and young people have yet to be assessed.
The huge backlog, which has left many “desperate” families without support for their children, has prompted the formation of a new support group, aimed at creating a space where parents and carers can find support whilst they are left “in limbo”.
Set up initially as a platform to share stories of heartbreak and frustration going through the system of assessment, the Highland Neurodivergent Support Group now has more than 360 members, and with a committee forming, they hope to drive change in the way the system works.
The group has reacted to many stories of bottlenecks in the system, with some families believing the NHS Highland NDAS service to be at a standstill.
Heather Smith, one of the mums running the group said of her son: “I had been pushing health visitors for an NDAS referral since he was 18 months old. He didn't get referred until 2019, and due to Covid he didn’t go on to the waiting list until 2021.
“I was told by the senior services manager that there was no end date in sight for his NDAS assessment. I have been advised to go private by some, but some have advised there is no guarantee that a private diagnosis would be accepted by Highland Council for educational support.
“My son is now eight and has had no professional support in his life. He is now suffering from suicidal ideation, and despite trying for a CAMHS (Child and Adolescent Mental Health Services) referral through various pathways we were rejected.
“There is no provision for children, and the families waiting have not been informed of the NDAS situation, with no interim contingency support offered to families.
“Most Highland schools have no clue themselves how to cater to additional needs. These children are simply being forgotten. It's not acceptable.
“The system that Highland Council and NHS Highland have set up totally lacks clarity, transparency and is convoluted, meaning families are being passed around the houses when they are desperately seeking support.
“Even for someone like myself who has health literacy and connections, I have got nowhere. I have sympathy for families who are not even being triaged at present for NDAS referrals. I know one mum who has waited 18 months and hasn't even got a referral.”
Samantha MacNeill, one of the founders of the group, said: “Funding has been cut in many areas in the NHS - this is only one of them.
“They are simply not advertising the jobs. It’s like being back in the dark ages.
“It’s almost like the procedures are the same ones as the ones we had when we were five. People’s knowledge around ADHD, autism and other neurodivergent conditions has increased - but the system hasn’t matched up. We are still behaving the way we did 30 years ago.”
NDAS (Neuro developmental assessment service) is a multi-system, joint agency service between NHS Highland and the Highland Council. The service assesses and diagnoses, through a multi-disciplinary approach, neurodevelopmental disorders in children and young people in the north Highland/Highland Council area.
One parent, whose child was added to the waiting list in 2020 after moving to Highland from Moray, said: “My child has had no appropriate school placement due to having no diagnosis, and no school education.
“She reached Primary 7 and then still wouldn’t be put into a placement due to no diagnosis, with an offer of mainstream school for 40 minutes a day for three days a week.
“This lasted three months. She would be in fourth year, but has never had a high school education all because of the wait for a diagnosis.
“We cope as well as we can with what comes along with ADHD, but her anxiety is our main problem. It affects her life especially when it comes to school and socially.
“I’ve begged to the school GP and paediatrician and we’re still no further forward a year later. I struggle to send her to school and when I do she gets sent home a lot because her anxiety gets so bad with noise and she ends up overwhelmed with tasks.
“She is so loving and caring and it’s so heartbreaking to see what it’s doing to her.”
’This ain't good enough’ - politicians share their support
Highland and Islands MSP Emma Roddick said she has been raising this issue in Parliament and through letters to ministers, having supported numerous families seeking help with waiting times.
She said: “I'll continue to do this and am always happy to work cross-party on such matters.
“As a neurodivergent person, I know how difficult it can be to function and succeed while you're in that period of not knowing a diagnosis or having formal input, however, I would always remind families that children are entitled to reasonable adjustments at school and at work even without a formal diagnosis. My office is ready to help whenever access to public services is not as it should be.”
Inverness and Nairn MSP Fergus Ewing said parents in his patch have contacted him and are “hugely concerned” about the lack of support for their children.
He said: “They are waiting for help with NDAS - neuro development assessment is the jargon. In practice this means making sure all children achieve their milestones of development - and if not, how to help them.
“This ain't good enough. The Highland board needs to get extra support and tackle the appallingly long waiting lists here.”
MP Jamie Stone said: “Canvassing door-to-door during a General Election campaign is guaranteed to bring delight. Importantly, it underlines the issues that are worrying people.
“It became abundantly clear to me that neurological assessment was very high on the list. Indeed, on one doorstep, I heard of a child who hadn't been to school for 13 years because of a lack of assessment. This shocked me to the core.
“For that reason, I’ll do all that I can to help sort out this deeply worrying problem. I shall be very happy to discuss this issue with the NHS and Highland Council, so that we can find a way forward."
Pandemic and staffing issues
NHS Highland says a “pause” on the delivery of the service during the Covid pandemic has had a “significant impact” on waiting times, but did concede that additional pressures have been created as a result of “difficulties with recruitment”.
A spokesperson said: “Similar to other areas across the UK, NHS Highland is experiencing high demand for neurodevelopmental assessments and services.
“As with many services, Covid-19 had a significant impact on the delivery of the Neurodevelopmental Assessment Service (NDAS). Early in the pandemic the service was paused for a period.
“The break in service had a significant impact on the waiting lists in terms of the number waiting and the lengths of waits experienced.
“A significant increase in the number of referrals and difficulties with recruitment to some posts has added additional pressure.
“With support from Scottish Government, including some additional funding, NHS Highland NDAS has been working hard to improve the service.
“Whilst recognising the challenges at a UK level around recruitment of clinical staff, further recruitment into the service is being progressed. The service currently holds vacancies in psychological services.
“All new referrals into the service are being screened and added to a waitlist.
“All children and young people can be assessed for neurodevelopmental conditions by non-NHS providers (i.e. private health care providers) and have the right to be referred to Specialist Children’s Services in NHS Highland for consideration of treatment, where they have previously been assessed and/or treated for a condition outwith NHS Highland.
“Referrals for assessment and/or treatment by NHS Highland Specialist Children’s Services are reviewed by appropriately trained clinicians.
“Within the NHS Highland policy, there are specific criteria for assessments conducted by private and/or non-NHS providers that must be met to allow a child or young person to be treated without requiring additional formal assessment by an NHS Highland clinician.
“Where an assessment and/or referral is deemed not to meet the criteria, a child or young person may be required to undergo formal assessment by NHS Highland, prior to commencing any treatment with NHS Highland.
“Due to the current clinical capacity within the service, each assessment appointment requires careful consideration to ensure that appointments offered are based on clinical prioritisation.
“Currently 1700 children and young people are on the waiting list.”
