A new report has laid bare the struggle faced by "scared parents with even more scared children" in navigating NHS mental health services for young people with autism.
The report, produced by patient watchdog Healthwatch Northumberland, comes after it received feedback from families that "some NHS mental health services aren’t working for their autistic children". Based on feedback from 90 people across the county, the report highlights how some parents shared how they were "jumping through hoops" or even "made to feel they were fabricating or exaggerating concerns".
Though there is much positive feedback, Healthwatch has highlighted themes particularly around access to support which can make life tough for families.
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The report deals with feedback from families in the county who have had experience using services such as school nursing, the Children and Young People Service (CYPS), Primary Mental Health Work Service (PMHW), and crisis team. Healthwatch also heard from parents about the process of obtaining an autism diagnosis.
In summary, Healthwatch found: "Those who had positive experiences gave feedback on good relationships with individual staff at services and the impact or help they had or were providing to their child. Better experiences of accessing services were related to early recognition and help from schools or GPs or other health professionals.
"We heard repeated words or phrases to indicate the difficulties parents had. The words ‘struggle’ ‘fight’ and ‘battle’ were common with parents feeling they weren’t being listened to or had to ‘prove’ there was a problem. Phrases like ‘ticking boxes’, ‘jumping through hoops’ and ‘meeting thresholds’ arose with one person relating it to a computer game where you had to go through levels to get to the end."
According to Healthwatch, though some parents reported positive experiences with autism assessment and referrals, "just under half had a less positive experience of waiting times citing that the time taken to receive a diagnosis was too long". Others mentioned being forced to pay privately for assessments, while the missing of autistic traits - especially in girls - by school professionals was another issue.
One parent said: "My daughter was missed by school entirely because schools don’t understand autistic masking or autism traits commonly found in girls." Another added: "It took me nearly ten years to get a diagnosis. My child and me were let down by every single system."
Parents also identified further issues around support after a diagnosis. The report continues: "This was particularly difficult for parents where their child had enduring or ongoing mental health issues as it was felt there was no follow-on support for this or that they had to start a process of seeking support for this elsewhere. Some feedback centered around the feeling that mental health issues in autistic children and young people were being dismissed simply as ‘part of the autism’ leading to this lack of support."
Issues identified also included that only 39% of those providing feedback about the school nursing service - delivered by the Harrogate and District NHS Trust - rated it positively. Though some parents praised individual nurses, others highlighted delays in getting help and support.
Delays were also problematic in the Northumbria Healthcare-run PMHW service. There were concerns about about accessing appointments with one parent highlighting: "It’s a huge fight to be seen. Too many people chasing too few appointments." Similarly, the main feedback on the CYPS service offered by the Cumbria, Northumberland, Tyne and Wear NHS Trust was around timescales and access to appointments.
The latter service saw, Healthwatch said: "Just over two thirds of respondents found it difficult or very difficult to access the service."
The report contains 16 recommendations for the NHS services to take forward, these include the need to review information supplied to families, and that there should be a "culture of celebration and valuing neurodiversity" throughout the process of getting an autism diagnosis. There is also a call to "simplify the pathways" for autistic children and young people accessing mental health support.
The North East and North Cumbria NHS integrated care board (ICB) which commissions these services responded to the report by thanking Healthwatch Northumberland for spotlighting the thoughts of those using the "vitally important services". They added: "We are very much aware of the importance of these services to families across our area - particularly in view of a major increase in demand over the past three years.
"Early diagnosis and support are important, as well as the chance for young people and families to have a voice around the services they use. We know that too many people in our region wait too long to be diagnosed with autism or other neurodevelopmental differences, meaning that early help and support is delayed.
"We also know that without a medical diagnosis of autism or neurodiversity, help, support and reasonable adjustments can be difficult to access.
"One of our key aims is therefore to work with young people, families and NHS providers to enhance these services."
The Northumbria Healthcare PMHW service accepted improvements in communication are needed and said the report had provided "invaluable insight", the team said it was looking forward to addressing the recommendations made. The CNTW trust welcomed the report and acknowledged the increased waiting times.
That trust cited the national pressure on NHS staffing levels and said new leaflets had been created for families and that post-diagnostic support is now being provided by independent charity the Toby Henderson Trust.
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