What were we seeking views on?

In the past two years, the Kent and Medway area has seen a rapid 600 per cent increase in demand for adult ADHD services. This is a national issue and waiting lists for a specialist assessment with the adult ADHD service can take several years.

What we did

We promoted ways to get involved which was through an online survey and face-to-face or online discussions across Kent and Medway at our engagement events. Both the survey and events were co-created with a patient reference group of people with lived experience and we thank them for their time, thoughtfulness and insights which improved both methods.

The survey was shared via social media, NHS Kent and Medway's website, News for you bulletin, GP update and the stakeholder bulletin. It was also shared by supporting Voluntary, Community and Social Enterprise (VCSE) sector and other organisations. Text messages were also shared with 4,000 people who had been waiting the longest for an ADHD assessment.

Overall, we heard from 1,199 people.

These findings were presented to the Learning Disability and Autism Delivery Partnership Board, as well as shared with Medway Council and Kent County Council's Health and social Care Scrutiny Committees.

We considered all feedback from this engagement, advice from subject matter experts and those with lived experience, as well as relevant national policy. This work is helping to inform decisions on how we can improve adult ADHD services. It has influenced decisions on the support we commission. It also led us to work with people with lived experience  and build a website to signpost people with ADHD to support and services .

What we heard

The responses included the challenges that impact those waiting for an assessment, half of which are not accessing support.

  • Waiting times and diagnosis: many participants waiting several years for an assessment.
  • Communication: poor communication with the referral system with many feeling 'forgotten'. Other comments include the need for more accessible formats in ADHD-friendly information e.g. short videos and written bullet points.
  • Support pre and post diagnosis: many participants said they need support including in-person support, help with forms, follow-up care, medication management, parenting, parenting, day-to-day tasks, peer groups, employment and financial guidance, therapy and coaching.
  • Information and awareness: many responses included the need to have better information around getting a diagnosis and awareness about available support.
  • Healthcare professional training and resource: offer additional training for general practice staff about ADHD so they can offer support in signposting and referring.

People shared possible solutions including:

  • Having a central directory for ADHD-friendly services.
  • Care navigators.
  • Dedicated crisis support.
  • Therapy.
  • Tailored mental health help.
  • Support for carers and families.
  • A buddy system to provide emotional and practical support.
  • A visible NHS waiting list system.
  • Employment and workplace support.

Read the Adult Attention Deficit Hyperactivity Disorder (ADHD) review [pdf].