A Gedling mum has expressed her frustration, during Neurodiversity Awareness Week, at delays to Nottingham's ADHD and autism diagnosis services. The average waiting time for a diagnosis is now around one or two years.
Neurodiversity Awareness Week aims to highlight conditions such as attention deficit hyperactive disorder (ADHD), autism spectrum disorder (ASD), dyslexia and Tourette's Syndrome. It is estimated that one in five people in the UK are neurodiverse.
The new services in Nottingham were established in 2020 with the aim of streamlining the process of applications for diagnosis and prescriptions. However, it appears to have had the opposite effect with many patients considering turning to private services to get a diagnosis faster.
Patients cannot be diagnosed by their GP and must see specialists for a diagnosis. In Nottinghamshire this is the Neurodevelopmental Specialist Service (NeSS), who offer diagnosis, support, medication and advice.
Kirsty Truswell, 35, is a mum and full time carer from Gedling. She applied for an ADHD diagnosis for herself in September last year and has been told she needs to wait another 12 months.
She is a full time carer for her son Mason who was diagnosed with cystic fibrosis when he was just nine days old. As part of Mason's condition, Kirsty has to remember to give him medication and take him to appointments - scheduling and memory can be difficult for people with ADHD.
An ADHD diagnosis would allow Kirsty to seek medication, support and help that would improve her daily life and make caring for her son much easier. She was interested in applying for an diagnosis after seeing ADHD awareness content on social media. She recognised a lot of the symptoms in her own behaviour and past.
"I saw a few female TikTok influencers discussing their ADHD and thought it sounded like me," she said. "My doctor referred me and put me through to NeSS. It's been taking forever to get an appointment to even talk to them.
"I got a letter back from them to say it should be another 12 months for ADHD and a further 24 months for autism spectrum disorder (ASD). It's upsetting and adding to my depression. I can't get myself right because a doctor can't give me a prescription until I have a diagnosis. It's the waiting that is frustrating and its hard."
She added: "It makes my daily life more difficult as I struggle with things like housework. I care for my child who has cystic fibrosis and I have to do his medication and physiotherapy. It's a challenge and I try to keep going by making schedules for myself. His doctors have said he is doing really well and I've done brilliantly with his care which is great.
One of the symptoms of ADHD means that short term memory is affected meaning that patients can struggle with remembering to do or complete tasks. Exhaustion is often a side effect of coping with ADHD symptoms in every day life.
"I have to set alarms though to remind me but emotionally the ADHD is exhausting," she said. "I'm so tired every day as a result of it."
It is an option to go private when it comes to care but it can be expensive and there are now waiting lists as a result of patients switching to speed up the process.
Kirsty has previously been diagnosed with dyslexia, another neurodiverse condition where people struggle with reading and writing. This has made email communication difficult. She said this has also caused issues at a previous job in care as she was unable to complete paperwork which led to her dismissal. She has since worked as a cleaner.
"I would like to get a diagnosis so I can get help for myself," she said. "I need help with managing every day stuff because at the moment I am totally drained and its difficult with my depression. It could help to make things easier for myself. I wish they could speed things up or give us alternatives on how we can access help."
Speaking with Nottingham Post, an NHS Nottingham and Nottinghamshire CCG spokesperson said: “Demand for neurodevelopmental services (including Autism and ADHD) has grown nationally by 35 per cent in 2021, and in Nottingham and Nottinghamshire we’ve seen an increase in referrals over the past year.
“We continue to work closely with our partners across the healthcare system in Nottingham and Nottinghamshire to manage this demand and reduce the time taken for children, young people, and adults to receive an assessment for Autism and ADHD, and have increased local services in response to the growing demand for assessment and support.
They added: "We understand the importance for people to receive support while awaiting the outcome of their assessment which is why we have also commissioned a new service which allows people to receive additional support through a pre-diagnostic service. The new service provides information and support to people from the earliest opportunity.
"Children, young people and their families are able to access telephone and drop-in support via the local providers. There is also a wealth of information available on the National Autistic Society website and links to local commissioned support via the city and county Local Offer websites."
