SPICe has recently received a number of enquiries regarding private ADHD assessment and shared care agreements. This blog will outline the prevalence of Attention Deficit Hyperactivity Disorder (ADHD) in Scotland, and the challenges faced by NHS neurodevelopmental assessment pathways. It will then explore the recent growth in private ADHD assessment, and the subsequent increase in requests for shared care agreements by patients wishing to access privately prescribed ADHD medication through their NHS GP. SPICe also recently published a blog on private healthcare.
What is ADHD?
Attention Deficit Hyperactivity Disorder (ADHD) is a group of behavioural symptoms including hyperactivity, difficulty concentrating and paying attention, and impulsiveness. ADHD is a neurodevelopmental disorder, a condition arising from the functioning of the brain. Other common neurodevelopmental disorders include autism and intellectual disabilities. Many people who have ADHD begin to experience symptoms in childhood, which can continue into adulthood.
ADHD can present differently in adults, making it more difficult to diagnose a person’s condition. Symptoms can be more subtle, and adults may be less affected by hyperactivity, whilst still experiencing inattention and impulsivity. It is currently thought that as ADHD is a developmental disorder, it cannot present in adults for the first time.
In both adults and children, ADHD can present alongside other conditions, including autism, anxiety, and depression.
ADHD is diagnosed by specialists such as psychiatrists or ADHD nurses, rather than GPs. These specialists use the DSM-5 guidelines for ADHD to help them diagnose the condition. A GP can refer a patient for assessment by a specialist if ADHD is suspected. Similarly, ADHD treatment is usually arranged by a specialist, although a patient’s condition can be monitored by their GP.
ADHD can be treated using a combination of medication and therapy. Not everyone diagnosed with ADHD will choose to take medication. Some ADHD medications are first administered at a lower dosage, before being gradually increased to find the optimal dosage for the patient. This process is known as titration. ADHD medication shortages have been reported in recent months, affecting fulfilment of both NHS and private prescriptions.
Prevalence of ADHD in Scotland
ADHD is thought to affect approximately 5% of school aged children, meaning that around 37,000 children in Scotland are living with ADHD. It is also thought that ADHD affects between 2.5 and 4% of adults. However, as data on ADHD is not currently routinely published, and many children and adults with ADHD may not have obtained a diagnosis or be in receipt of treatment, it is not currently possible to know exactly how many people in Scotland have ADHD.
The number of referrals for ADHD assessment has increased in recent years. For example, NHS Greater Glasgow and Clyde reported an increase of 1000% in adult ADHD referrals between 2020 and 2023, and the number of adult ADHD referrals in central Fife increased by 500% between 2012 and 2022. This increased demand has strained NHS services, as the resources available to support ADHD referral pathways have not kept pace with demand.
It is thought that increased awareness of the condition through social media may have contributed to the growing number of referrals for suspected ADHD, particularly among women and girls, for whom symptoms may manifest differently. Although a greater awareness of the condition may have a positive impact for people affected by ADHD and lead more people to obtain a diagnosis and treatment, there are concerns that health services may become overloaded.
A 2023 report by the National Autism Implementation Team (NAIT) noted a diagnostic rate of 86.14% across all neurodevelopmental diagnostic pathways, including ADHD, based on a case note analysis of 409 child and adult patients across ten NHS Scotland health boards. This figure suggests that most people who are referred for diagnosis of a neurodevelopmental disorder through NHS pathways meet the relevant diagnostic criteria.
NHS ADHD referral pathways
Each NHS Board is responsible for developing its own ADHD referral and treatment pathways, though these pathways will be informed by factors such as best practice guidelines. The Scottish Government’s national neurodevelopmental specification for children and young people establishes the expected standard of care for children with ADHD and neurodevelopmental conditions. The specification states that receipt of support should not be dependent on a formal diagnosis, and that children and their families should be offered support at the earliest possible stage.
In May 2023, the National Autism Implementation Team (NAIT) published a report on child and adult neurodevelopmental assessment pathways, commissioned by the Scottish Government. The team found that although all of Scotland’s NHS Boards had implemented pathways for childhood ADHD assessment, several Boards did not have referral pathways for adults with suspected ADHD. However, some of those Boards reported that they were in the process of developing an adult ADHD referral pathway. The Scottish Government is working with NAIT to implement the findings of its report. The Royal College of Psychiatrists in Scotland has produced a set of guidelines to support referral and assessment of ADHD in adults.
NHS waiting times
Timely and appropriate assessment and treatment may help to alleviate some of the adverse health, social, educational, and economic outcomes experienced by people with ADHD. Waiting times for ADHD assessment in Scotland are not currently routinely published. Where data has been made available, it suggests lengthy waiting times for both child and adult ADHD assessment.
For instance, a June 2024 Freedom of Information request response from NHS Lothian stated that the average waiting time for an adult ADHD assessment in Edinburgh is 23.5 months. NHS Tayside responded to a Freedom of Information request in May 2024, stating that although it does not specifically track ADHD referrals, the current waiting time for children referred to its neurodevelopmental services is 154 weeks.
ADHD UK has developed a searchable UK-wide database of Freedom of Information request responses concerning waiting times for ADHD assessment. This resource can offer a starting point for understanding waiting times in NHS Scotland Board areas, though it may not reflect the most recent data.
Public Health Scotland has developed a Neurodevelopmental Pathway Trajectory tool to support NHS Boards in predicting and planning for future demand for services including ADHD assessment. The data generated by this tool is not publicly available.
Private ADHD services
Due to factors including long waiting times for NHS assessment, the impact of the COVID-19 pandemic upon NHS services, and patients’ perceptions of stigma regarding ADHD within the NHS, a growing number of patients, both children and adults, are seeking private diagnoses for suspected ADHD. This increased demand has contributed to a growth in private ADHD clinics, offering assessment and treatment in person and online. In Scotland, independent clinics are regulated by Healthcare Improvement Scotland (HIS), and patients are advised to ensure that the ADHD clinic they wish to attend is registered with HIS. A private ADHD assessment may cost up to £1200, depending on the clinic and whether the assessment is conducted remotely or in person. If a patient is diagnosed with ADHD and chooses to access medication through a private clinic, they would pay privately for their treatment, in addition to paying for services such as medication review appointments.
ADHD medication prescribed by a private clinic can sometimes be provided by the NHS under shared care agreements. When a patient receives a prescription from a private specialist, and has completed titration of their ADHD medication to determine the appropriate dosage, they may wish to ask their NHS GP to prescribe their medication, rather than continuing to pay privately for their prescription. There is currently no NHS Scotland policy regarding adopting shared care agreements; instead, this decision is at the clinical discretion of the GP, and the decision is sometimes made at practice or local level.
GPs must consider shared care agreements carefully. They may have concerns about issues such as the quality and accuracy of private diagnoses, particularly when a private diagnostic service is only assessing patients for one condition, and may therefore miss other potential conditions that could be causing or exacerbating the patient’s symptoms. They may also wish to confirm with a specialist that the recommended medication would not interact with any other medications the patient is receiving. The medication monitoring processes followed by private diagnostic service providers may also differ from NHS recommendations, potentially creating a difficult professional situation for a GP.
As such, if a GP or practice has concerns about entering into a shared care agreement, they may decide to refer a patient to the relevant NHS pathway for ADHD diagnosis, and to ensure that any treatment prescribed is in accordance with NHS guidelines. The General Medical Council has produced guidance for clinicians regarding shared care agreements. The Scottish Government guidance on agreements for NHS patients receiving healthcare services through private healthcare arrangements also includes a decision-making framework to guide clinicians through this process. Some NHS Boards, such as NHS Greater Glasgow and Clyde, have developed criteria for acceptance of private ADHD diagnoses.
GPs may also decide to decline a shared care agreement request due to workload and capacity issues. The increase in patients seeking shared care agreements has added to the workload of GPs, due to time spent assessing the quality of a diagnosis, and managing prescriptions and onward referrals. A recent survey of GPs found that four in ten respondents felt their workload had increased due to more patients seeking private healthcare, and subsequent follow-up from their GP.
If a shared care agreement cannot be obtained, a patient may choose to continue to pay for their prescriptions privately. However, the cost of funding private prescriptions may prove prohibitive, at an estimated cost of between £500 and £2000 per person per year. Some patients have reported rationing their privately-obtained ADHD medication to manage the cost of treatment.
In England, patients now have the legal right under the NHS Choice Framework to choose their mental healthcare provider. In practice, this means that patients facing long waits for ADHD assessment in England can access a private clinic, as long as the clinic provides services to the NHS in England, and accepts Right to Choose patients.
Ways forward
A series of actions have been taken to improve NHS neurodevelopmental diagnostic pathways in Scotland. The Scottish Government is working with the National Autism Implementation Team (NAIT) to develop a single diagnostic pathway for adult autism and ADHD referrals. NAIT also developed a neurodevelopmental assessment pathway for children, and received funding from the Scottish Government to support Health and Social Care Partnerships in creating local action plans.
Sarah Swift, Health and Social Care Team, SPICe Research
Featured image credit: PracticalCures via Flickr