Waiting Well

Waiting Well logo. Supporting your ADHD journey

 

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What does Waiting Well aim to do:

Look into how a digital tool could help adults who are waiting for an ADHD assessment by giving them useful information and support.

 

Why is this important:

Graphic with blue bubbles next to icons. 1. Clock icon with danger symbol. Many adults who are waiting to be assessed for ADHD can face delays of up to 5 years. 2. Head with a scrambled line inside. ADHD can make life more difficult - it's linked to mental health problems, trouble keeping a job and earning money and challenges in relationships. This can be more challenging for people not diagnosed. 3. Line of people waiting. Long waiting lists can cause a lot of stress. They can also cost health and social care services a lot more money. As more people learn about ADHD in adults, these waiting times can get even longer. 4. Phone with megaphone. One way to help is through a digital education tool, giving people clear and helpful ADHD information. This could make a real difference, helping people understand their symptoms and how to manage them. 5. Cog with magnifying glass. Right now, this kind of support isn't always offered while people are waiting. When it's offered, it's often just written down in documents that can be lost or may not be up to date.

 

What are the objectives of Waiting Well?

The main goal is to find out if a digital tool could help adults who are waiting for an ADHD assessment by giving them useful information and support. What we learn will help shape a bigger project to build the final version of the tool and test how well it works.

Spider diagram with 'What we need to understand' in the centre. Squares moving clockwise - 1. What research already exists about using information/education to support people with ADHD? 2. What is it like for adults who are waiting for an ADHD assessment? 3. What do people on an ADHD waiting list think about using a digital tool during that time? 4. Do healthcare professionals think this kind of support is a good idea? 5. How do healthcare professionals think the tool should be used? 6. What should the digital tool look like? 7. How can we measure whether a digital tool helps people with ADHD?

 

How will we achieve this?

The project will be made up of five main parts, each led by different researchers. These parts are called Work Packages (WPs). Over 15 months, each WP will focus on a different goal.

Graphic explaining the different work packages (WP). WP1: Set up a group called the 'Lived Experience Advisory Panel'. Make sure lived experience is involved throughout the project. WP2: Look at existing research on outcomes for ADHD education. Find out what digital tools are already available or being developed. WP3: Interview adults who have been on an ADHD waiting list to hear their experiences. Interview healthcare professionals working in ADHD services. WP4: Bring together a group of experts to help design the tool and decide how to test it. This includes clinicians, researchers, and digital specialists. WP5: Combine everything learned from other WPs, sharing findings. Write a funding application to build and test the final version of a digital tool.

 

Project Timeline 

 Flow chart timeline. Before July 2025: get ethical approval, recruit lived experience advisory panel (LEAP), make a connection with a digital health company. Summer 2025: start reviewing previous research, LEAP feedback on study materials, workshop ideas with a digital health company, gather panel of experts to discuss projects. Autumn/Winter 2025-2026: gather findings from previous research, look into previous digital tools, carry out interviews and analyse data, present findings on previous research and interviews to LEAP panel and digital health company. Spring/summer 2026: write funding application for a digital tool, write and publish papers on research findings, share findings with others.

 

How will we involve patient and public members?

 We will invite 8 adults who have recently waited—or are currently waiting—for an ADHD assessment to join a group called the Lived Experience Advisory Panel (LEAP). This group will be involved in every part of the project. The panel will be led by Mat Rawsthorne.

Before setting up the LEAP, we held a discussion with five adults who have lived experience of ADHD. They agreed that this project is important and will be joining the panel.

 

How will we communicate the findings of the project?

We will share what we learn by publishing in academic journals and speaking at conferences in the UK and around the world. We will also work with the LEAP to create materials that explain the findings in a way that’s useful and easy to understand for the ADHD community and the general public.

 

What benefits do we want to see coming from the project?

Graphic with blue bubbles next to icons. 1. Thumbs up: we want this project to make a difference to lots of people. This includes doctors, nurses, other people who make decisions about health services, those with lived experience of ADHD and companies that create digital health tools. 2. Arrow pointing right. To do this we'll share what we learn through social media, charities, mental health and advocacy groups. This will help connect with the public and the ADHD community in a meaningful way, spreading useful information to the people who need it. 3. Tick box: We hope that the funding application we will apply for can help us build a digital education tool, which will provide those on an ADHD waiting list with helpful resources and tools to support them while they are waiting for an assessment.

 

Who funds Waiting Well?

Waiting well is funded by the National Institute for Health and Care Research (NIHR) under its Programme Development Grant (Grant Reference Number NIHR208319).

The views expressed are those of the author(s) and not necessarily those of the NIHR or the Department of Health and Social Care.

 

Any questions?

If you have any questions about the project, please email This email address is being protected from spambots. You need JavaScript enabled to view it.

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