Children and Young People - Attention Deficit Hyperactivity Disorder (ADHD)
Background
Attention Deficit Hyperactivity Disorder (ADHD) is a condition in children and young people that makes it more difficult for them to focus, sit still, and control their impulses.
ADHD is part of a group of neurodevelopmental conditions that affect how our brain functions. Other neurodevelopmental conditions include Autism and speech and language conditions. Neurodevelopmental conditions are not mental health conditions. Based on national data, we estimate that there are nearly 30,000 children and young people with ADHD in Greater Manchester.
NHS GM continue its work to improve wider neurodevelopmental support for children and young people, focusing on ADHD and Autism.
This report set out what we have learnt from 9 weeks of engagement exploring how we can improve ADHD services with children and young people, their family and carers, and professionals from across Greater Manchester.
In total, we engaged with over 1,000 people in different ways and reached many thousands more. It is an unbiased review of key themes people shared with us, however, whilst it is comprehensive it does not include every point.
The report will further shape the proposals for improving children and young people’s ADHD services.
We will share updates here of what has changed because of the engagement, particularly around the recommendations.
You can read the full report by downloading it at the bottom of this page.
The key themes
Below are the 11 key themes form what people told us during the engagement.
- People are experiencing very long waiting times, and this is making the symptoms worse, and the service needs to change.
- People feel there is a lack of support whilst on waiting lists and they need earlier intervention/access to support.
- There is generally a lack of communication at all points in the journey.
- People need a diagnosis to access support.
- Schools have huge role to play in supporting children but are sometimes seen as gatekeepers. Schools need more help and training to support children with ADHD.
- Lack of integration between services, as well as issues with access, right to choose, acceptance of private diagnosis and shared care.
- Medication should not be the only support on offer and doesn’t work for many. Currently there is no other option Post diagnosis support is key, this is a lifelong condition, just having a diagnosis is not enough.
- The impact on the family and family history both need more prominence and consideration.
- Every is child is unique and the services aren’t responsive to that.
- People are generally supportive of prioritisation.
- There are inequalities in terms of access and experience. This is related to geography and some characteristics including age, gender and families on low incomes.
Key points for commissioners to consider
From the engagement, there are a number of key points that have emerged for the commissioners to consider.
- Waiting times are currently too long for access to diagnosis and support, so any new model need to consider how they can be reduced.
- The offer of support for many people is currently limited to medication, but there is a need for a broader offer of support.
- Consider how additional factors such as gender (e.g. masking), dual diagnosis, vulnerability and family circumstances might impact on eligibility for assessment and diagnosis.
- Consider how we reduce the gap in relation to wait times between those who are not able to pay for private diagnosis and those who are.
- Consider how access to support can be improved for specific groups where there are known gaps due to age, including under 6’s because they are too young, school age transitions, and 16–18-year-olds who are either being dropped off the children’s waiting list at 18, or being told to wait until they reach the adult age to go on that waiting list.
- When developing the hubs, think about accessibility and the different range of ways people need access, including both face-to-face and online opportunities.
- There were concerns raised that limiting access to assessment might create future crisis points for both the children and young people, and also for NHS mental health services. When developing the model, consider how this may be mitigated or managed.
- There were lots of suggestions for how the prioritisation criteria could be refined. Review these suggestions when updating the criteria.
- Consider how we can ensure consistency of application by professionals of the criteria for either referral or prioritisation, particularly given the subjective nature of the word “severe”.
- When developing the new model, consider that for some people diagnosis is about more than just access to support (e.g. validation and helping them understand themselves).
- Consider how we can work with schools to improve knowledge, awareness and capacity.
- Stigma and misinformation impacts negatively on people with ADHD and we should think about how the NHS can address or reduce this.
- When reviewing services and the new model, look at ways to improve communication throughout the whole patient journey, particularly whilst people are on the waiting list.
- Recognise the impact of the condition on the whole family (e.g. parents and siblings) and offer appropriate support and intervention.
- Consider the balance of parent and school voices and experience throughout the pathway journey, particularly when getting evidence of impact for referral or diagnosis.
- When developing the new model, integration between services is important to make the pathway run more smoothly for families.
- Many professionals and teams would benefit from more information and training about the condition and pathway to enable them to support people and implement the pathway consistently
Phases
Engagement report and other useful information
Attached is the engagement report