Interview with:
Jo Black
Research Psychologist, Business Consultant, and Charity CEO
Founder of The ND Harbour: a safe space for neurodiversity
High demand and outdated processes are creating a perfect storm for neurodiversity services. Clinicians are overloaded with admin and capacity challenges, waiting lists are unmanageable and the majority of funding is being put into assessment, with little into further care.
Recognition of the prevalence of autism in the UK has significantly increased, rising from an estimated 1% in 2010 to 4-6% today. Similarly, ADHD is now estimated to affect 3-4% of adults and 5% of children, which will only increase with rising referrals. Research into understanding and diagnosing both neurodevelopmental conditions, especially their complexities and overlaps, remains relatively nascent. Markedly, until the 2013 update of the DSM-5, it was not possible to diagnose both conditions in the same individual, causing a gap in research and understanding.
“There are huge volumes of people coming forward for assessment to better understand themselves”, says Dr Jo Black, autism specialist. “Adults who have felt misunderstood their whole lives are now seeking diagnosis and further support to help recover from the trauma of being a neurodivergent person in a neurotypical world”.
Jo’s background includes a PhD in autism research, hands-on experience in autism and ADHD assessment pathways, and leading operational and research projects. As a business consultant, Jo supports neurodevelopmental assessment and therapy services to grow, streamline operations, and secure funding. She is also the founder of The ND Harbour, a charity supporting neurodivergent people, autistic, and mother to an autistic child.
Closing the gap: a needs led approach to capacity and funding
Meeting capacity challenges – Jo highlights a critical shortage of clinicians with extensive training in differential diagnostics, namely the ability to rule out other possible conditions that share similar symptoms. “Although there are a lot of clinicians out there, and those seeking additional training, there’s simply not enough”, she says. Jo notes a rise in specialised nurses and teachers providing diagnoses, who are not trained in differential diagnoses to the same degree as psychologists and psychiatrists, for example. However, Jo also acknowledges that specialist teachers and nurses joining assessment teams expands the pool of professionals capable of providing assessments, which is a necessary step to meet current demand.
“Although there are a lot of clinicians out there, and those seeking additional training, there’s simply not enough”
She goes on to point to Australia’s approach as an interesting model for tackling capacity challenges, where GPs are being trained to deliver ADHD assessments. “However, training must ensure that the diagnosis is specific to ADHD or autism. Professionals must be able to distinguish between those conditions and others, such as mental health difficulties including personality disorders, anxiety, or bipolar disorder which all have overlapping features”, she concludes.
Understanding funding challenges – With such high costs per assessment (£1-2k), there is an inevitable gap in funding between assessments and pre and post-diagnostic care. “So much funding and attention is being poured into assessment with little into further support following a diagnosis”, Jo says. While there is a focus on ADHD medication management, little to no funding is being spent on tailored mental health support. “This is where charities like ours aim to close the gap”, she explains. The ND Harbour and charities like them aim to ensure that fewer neurodivergent people experience severe mental health difficulties. Support ranges from peer support groups for adults to play sessions for neurodivergent children and young people. “Allocating more funding into safe, specialised pre and post diagnostic care can help reduce the strain on other areas, even possibly on diagnostics” she believes.
“While there is a focus on ADHD medication management, little to no funding is being spent on tailored mental health support”
From waiting to wellbeing: digital innovation in neurodiversity care
Digital technology has huge potential in supporting clinicians and operational admin staff to cope with pressures. “Clinicians spend a lot of time with an individual and their families, gathering so much information, which then needs to be written up into a report”, Jo explains.
“The client then has to wait for that report following an assessment, sometimes up to several weeks later, which can be a difficult period of waiting”, Jo goes on. “If technology can speed up this process, whether with AI integration or speech to text, the time saved for the clinician and the improvement of the client experience will be invaluable”, she says.
“The amount of admin time saved by automating standard client communications and diary management will make a huge difference to capacity and wait times”
Automated booking processes and tech to support multi-disciplinary teams will also make a huge difference. “As organisations start to scale and incorporate multiple assessment teams, especially autism assessments, which have to be multi-disciplinary, technology can help with managing diaries so teams can link up and stay informed”, Jo says. “The amount of admin time saved by automating standard client communications and diary management will make a huge difference to capacity and wait times”.
However, technology should never replace face to face interactions. “The importance of human connection and face to face interaction in assessments is so important”, Jo caveats. “Especially when you’re assessing young children and you’re looking for non verbal behaviours and social reciprocity in autism, it’s just not viable to conduct online assessments, especially for children under six. Its also important for people to be able to reach a human when they need to while waiting for assessment, so we need to be careful not to over-automate systems and lose that human touch”, Jo concludes.
Reimagining neurodiversity workflows and care pathways
For all healthcare services, collecting robust data is essential to support evidence-based outcomes for service users. “High-quality reporting, in particular, is exceptionally important, especially when seeking public funding”, Jo advises.
“The care pathway feature within iaptus is not paralleled in any other patient record system that I’ve worked with”, Jo expands. “The level of detail you can have within the care pathway is invaluable. You can fix it to dates, add notes, see when someone enters the care pathway and analyse the data when someone moves between pathway stages”, she says. This becomes very important, particularly if organisations want to seek CQC registration, or to get accreditation with the NHS on the Right to Choose framework.
“The care pathway feature within iaptus is not paralleled in any other patient record system that I’ve worked with”
Monitoring and improving wait times is one of the biggest challenges faced by services at the moment. “The NHS monitors metrics such as times from referral to first point of contact, and referral to first appointment. iaptus makes that so easy to monitor, by comparing the date the referral was received to the date they entered, or left, a particular stage in the care pathway. And you just can’t track that so easily on any other system”, Jo says. “You also have the ability to add the different discharge stages so you can monitor diagnostic rates really easily, which I’ve found particularly straightforward on iaptus”.
“You can also access all the client data that you need in one data pull. Additionally, with ADHD medication management, if someone is due for a medication review, you have the ability to add future care pathway stages”, Jo says. “It’s especially important for monitoring the quality of your service, such as analysing diagnostic rates for unusual patterns or DNAs to ensure your service isn’t losing revenue through missed appointments”, Jo concludes.
Read more from our thought leadership series here.
Digital technologies provide promising solutions to help neurodiversity services within NHS, voluntary, private, and public health settings cope with pressures.
Written by
Louisa Clark
hi@mayden.co.uk
If you would would like to contribute to our thought leadership series, please get in touch.
