261-year waiting list for Sheffield adults seeking diagnostic assessment for ADHD
Data uncovered by Now Then shows just 9 people received an ADHD diagnosis from the Sheffield Adult Autism and Neurodevelopmental Service in one year.
Neurodivergent people seeking diagnostic assessment under the NHS must face a labyrinth of bureaucracy and ever-growing waiting lists.
As of next year, an estimated 800,000 people will be awaiting an ADHD assessment, as well as 190,000 awaiting an assessment for autism, as the UK-wide backlog continues to grow. After years of austerity and a pandemic, it’s hard to imagine an NHS with the infrastructure and resources to cope with such numbers.
In Sheffield, the picture appears especially dire for neurodivergent adults.
The Sheffield Adult Autism and Neurodevelopmental Service (SAANS) is responsible for the assessment and diagnosis of neurodivergence in adults, in particular for autism and ADHD. A Freedom of Information (FOI) request submitted by Now Then has revealed that in the 12 months between June 2022 and June 2023, just 21 adults received an assessment for ADHD from SAANS, resulting in nine diagnoses - with 5,481 service users on the waiting list at the end of the same period.
At a rate of 21 assessments per year – an average of just 1.75 a month – it would take no less than 261 years to get through the current waiting list. This stands in contrast to the waiting times on the SAANS website, which lists an estimated wait of five years for diagnostic assessment for ADHD.
The picture for adults awaiting an autism assessment is undoubtedly better, but it still remains a far cry from NICE’s recommended maximum waiting time of 13 weeks. 688 people were assessed in the 12 month period from June 2022 to June 2023, resulting in 559 diagnoses - with 2439 left waiting at the end of this period. Whilst the shortest wait time experienced by a service user assessed during this period was just 4 weeks, the longest was over 4 years.
The SAANS website claims that a diagnostic assessment for autism will take 14 months if your GP is Sheffield-based and three years and nine months if they are not.
On their website, SAANS cites increased demand, as well as the COVID-19 pandemic, as the primary reasons for these growing waiting times.
Waiting times may also be increased by people referring themselves to SAANS via the ‘Right to Choose’ - a piece of legislation that allows NHS patients to choose where they receive treatment, regardless of where they live. Whilst this gives patients greater control over their own care, without much-needed resourcing, funding and better infrastructure, it can lead to enormous backlogs.
Another likely reason for an increase in referrals is a greater understanding of the varied ways in which ADHD and autism can present. Women are far less likely to be diagnosed with either ADHD or autism in childhood, leading to an increase in referrals to adult services. Even now, the prevailing stereotype surrounding ADHD and autism is of young, white boys, meaning that older people, people of colour, and people of marginalised genders are often missed or even misdiagnosed.
However, recent years have seen an increase in understanding in the ways that both neurotypes can present in people who do not fit this stereotype, meaning that many adults may be coming to the realisation - and seeking diagnosis - later in life.
Why does an autism or ADHD diagnosis matter?
Autism and ADHD have historically been categorised as ‘neurodevelopmental disorders’, and remain categorised as such in the ICD-11, the diagnostic manual most commonly used in the UK.
However, in recent years, discussions of neurodiversity and neurodivergence have led to both being understood increasingly not as illnesses or disorders, but as neurotypes. Many of the negative outcomes attributed to autism and ADHD can be linked to difficulties meeting the expectations of a society that does not cater to neurodivergent people, and the stress associated with ‘masking’ traits in an attempt to pass as neurotypical.
As such, self ID – identifying as ADHD or autistic without a formal diagnosis – is relatively well-accepted amongst autistic and ADHD people.
Another reason for the acceptance of self ID is precisely because of the barriers to diagnosis named above, and the prohibitive costs associated with a private diagnosis.
But a diagnosis is still required in order to access a wide variety of support, financial and otherwise. This includes Personal Independence Payment, Access to Work, specialised support within academic settings and more. As a result, access to diagnostic services is critical in determining the life outcomes of neurodivergent people.
For instance, both ADHD and autism are known to be linked to difficulties in finding secure, long-term employment. The exact percentage of neurodivergent people in employment in the UK is unknown, but evidence from 2021 shows that 29% of autistic people were employed compared to 81.6% of non-disabled people. As such, neurodivergent people are more likely to live in poverty, especially those who are multiply marginalised.
When accessibility and support is crucial to participation in education, employment, social life and more, the effects of a delayed diagnosis can quickly compound. Undiagnosed and unsupported, autistic and ADHD people are much more likely to experience anxiety, depression, addiction, suicidality and other mental and physical health issues, drastically reducing their life expectancy.
In an ideal world, autistic and ADHD people would no longer be seen as 'disordered' or 'ill', and accessibility and support would be offered with or without a diagnosis. Until then, diagnosis remains a necessity for many neurodivergent people.
In this regard, Sheffield’s services are failing people astronomically. It seems the effects of years of government cuts and the pandemic are only just beginning to show – the impact is alarming and, all too often, deadly.
A spokesperson for Sheffield Health and Social Care NHS Foundation Trust said: "We know that waiting times for diagnosis for autistic spectrum disorder (ASD) and attention deficit hyperactivity disorder (ADHD) are too long. We are working with our partners in South Yorkshire to change the way we work and increase our staffing to meet the demand for our services.
"Nationally the number of people requesting or being referred for a diagnosis has grown exponentially over the last five to ten years so the pressure on our services is significant. Our current longest wait for an assessment is five years and we try to help people understand waiting times by putting this information on our website."
This piece was updated on 12th October 2023 to include estimated waiting times listed on the SAANS website for ADHD and autism diagnostic assessment, and again on 16th October to add a comment from SHSC.
