Names changed to protect identity
Sarah is in her 50s and was attending a work event with some Autistic members of the community, when one of them said ‘how do you find it?’ He meant, being neurodivergent, specifically living with attention deficit hyperactivity disorder (ADHD). She explained she wasn’t diagnosed with ADHD. However, when she got home she felt puzzled and start doing some research into ADHD online; she learnt about inattentive ADHD, how ADHD can present in women, about ADHD shutdown where the brain ‘switches off and you want to run away from a situation’. She also began to see more targeted advertising on social media for ADHD testing. This suddenly felt like a ‘light bulb moment’. She always put down any inattentive symptoms to potentially the perimenopause or anxiety, never having considered that she herself may in fact have ADHD like her son who was diagnosed as a child.
Seeking help
The first steps
Knowing it wasn’t an emergency she saw a GP at her local surgery, took along an online questionnaire she had filled in about ADHD symptoms and finally felt she was properly listened to. Through the Right2Choose process she chose Psychiatry UK to gain an assessment, however, they shut down. So she went with another provider, in September 2025. She the received forms to be filled by a family member, herself and someone who knows her now. She explains she felt quite stressed and under pressure as these needed to be returned within 10 days to the assessment provider or there was the threat of being discharged! She explained that these forms had to be completed online and that she thought that was a barrier to good communication with some people who might not be as digitally literate as others.
Delays and frustration
She ought to have heard about an assessment in 4-6 weeks after that, that is their commitment to their patients. However, by the end of December she had waited over six weeks and had hear nothing. Feeling ‘frustrated and mad’ she contacted the assessment provider only to be told that they couldn’t proceed as yet with the assessment process as they had written to her local Integrated Care Board (ICB) in South Cumbria and had not yet heard back that they would fund this referral. The provider confided that this was not the first time an ICB had been slow in replying regarding funding. So, at Christmas time, she felt ‘bewildered’ and ‘in limbo’. However, in the second week of January 2025 she received a link to a letter via text – she was elated, thinking this was finally an offer of assessment. It was not! Again, she worried what the less digitally savvy would have done in this situation – with the information provided coming via text message. She felt like she was going to complain. However, in mid-February she received a letter to say that the ICB had responded and released the funding for the assessment to go ahead. ‘Brilliant’ she thought.
She then had the assessment, over the phone, one week later. She felt very nervous before the assessment and particularly pressured as they said they would send a text one minute before the phone call with a link to the video messaging service on which the assessment would take place. Again, she had the thought, what would you do if you didn’t use a mobile phone? She had the assessment and at the end was told she does fit the diagnostic criteria for inattentive ADHD.
Mixed feelings
At this point she said she felt like she didn’t want to find out she had ADHD, but at the same time she felt that it would explain some of the last-minute nature of her personality.
She said, ‘it’s taken me this long to get a diagnosis, what if I had learnt about it (the diagnosis) earlier – I might have been less hard on myself’.
She spent a while questioning whether she has ADHD for real, and this was not helped by reading the report which gave her the diagnosis but held some factual inaccuracies about her place of birth amongst other things. She questioned whether the assessor had listened to everything she said and understood it. She said she felt like the assessor categorised her ADHD using tick boxes rather than understand what she explained, particularly about her time at school. She said he was blunt, and could have explained things in a nicer manner, complaining that she was ‘digressing’ when she was giving answers.
After the assessment, some physical health checks were reccommended such as an echocardiogram and blood pressure check but couldn’t really explain why. When asked what support the assessor had mentioned to follow up from the diagnosis, she explained that the assessor said counselling would be available and that there was a grant available from the government – he didn’t explain it well but with some prior knowledge in this area, she knew this was from the Access to Work fund. At no point she said did the assessor mention that she was eligible for Reasonable Adjustments. She said she felt ‘brushed off’ and that she wasn’t impressed by his ‘bedside manner’. She also felt that the assessor could have taken more time with her, over the assessment.
Communication challenges
She waited a week, waiting for the GP to make contact about the report and the new diagnosis. She read the report, one thing that stuck in her head was the recommendation not to take caffeine in her food and drinks. But overall, she felt that the communication process pre assessment and during the assessment was ‘not the best’.
What needs to change
Sarah believes there are several areas that need improvement:
- The right to choose your provider is positive but the waiting time for funding decisions is unacceptable
- The process needs to be much more person-centred
- There should be clearer explanations and better communication, both pre-assessment, during, and after
- Digital-only communications exclude people who may not have the skills or tools to engage in that way
She described the whole experience as “very bewildering” and in need of more support at every stage.
Do you wonder if you have ADHD but haven’t got a diagnosis yet?
There are groups that may be able to support you. Often when looking for ADHD services you may find that Autism services also have an element of ADHD support too.
- Locally – For adults: South Lakes ADHD & Neurodivergence Adult Support | Facebook
- Locally – For families: Autism – Kendal Family Drop-In Centre
- Nationally: Autism and ADHD Support