South east London STOMP clinic patient story: Tom
What is STOMP?
STOMP stands for stopping over‑medication of people with a learning disability, autism or both.
The STOMP service helps ensure people take only the medicines they need. In south east London (SEL), around one in four people with a learning disability are prescribed mental health medication without a recorded diagnosis. To help address this, the SEL STOMP Clinic was established. The clinic provides specialist services tailored to individual needs and reviews their medication, ensuring treatment is appropriate, safe and effective.
This patient story tracks Tom’s* journey with the STOMP service in south east London.
*pseudonyms replace names in this patient story to protect privacy. Thank you to everyone involved for sharing this patient story.
Background
Tom is a young man in his early 20s, who was diagnosed with autism when he was three. His mother, Deborah, describes Tom as incredibly funny and creative. He likes animals, theatre and cinema, watching YouTube videos and drawing.
Starting sixth form was quite disruptive for Tom. Challenges, such as not enjoying his new courses, led to his anxiety and OCD (obsessive-compulsive disorder) symptoms getting worse. Deborah reflects how Tom could have benefitted from better support in the school system, including help to realise his aspirations and goals.
Increasingly, Tom would also get upset and experience sensitivity to sound. This could sometimes lead to the risk of Tom hurting himself or breaking things out of frustration if they didn’t work how he expected them to.
As a result, Deborah was very worried and contacted the GP multiple times for help. She was looking for support from someone who would really understand Tom and what he needed, following previous experiences of counsellors that didn’t understand autism, whilst other relevant services that had closed.
Tom’s profile
Name: Tom (*pseudonym)
Age: Early 20s
Location: At home with his family, including his mum, Deborah
Prescription: Anxiety medication and melatonin
Work with the STOMP team
The GP referred Tom to the south east London STOMP Clinic Team. Rhianna, Lead Behaviour and Wellbeing Practitioner within the STOMP team, worked closely with Tom and his family to provide person-centred holistic support.
Tom was prescribed anxiety medication and melatonin but often forgot to take it even with support. A key aim for working with the STOMP team was to help Tom take his medication regularly and at the right time.
Key changes
- Medication routine: Rhianna worked with Tom, Deborah and the GP to develop a routine to help him to take his medication at the right time.
- Emotion regulation resources: Rhianna created a behaviour profile and emotional regulation toolbox, which included a plan and resources to help Tom identify how he is feeling and what he needs to help manage his emotions and behaviour. These resources were co-designed with Tom at every stage, including printing out the information posters so Tom could personalise with drawings and images of animals that he likes.
- Hospital passport and reasonable adjustments: Rhianna completed a hospital passport and reasonable adjustments document to help with attending appointments, as well as arranging reasonable adjustments for future work experience placements and jobs.
- Personalised support: Rhianna supported Tom and the family on sleep hygiene and also worked with social care and specialist autism services to get more provision in place.
- Learning Disability Register: Tom had never been screened for learning disabilities as a child, as his autism had been the focus in school and with health and care services. Rhianna used the Learning Disability Register Inclusion Tool to get him onto the learning disability register and ensure he receives an annual health check.
“I then made a behaviour profile, which was essentially like a short behaviour plan. Tom had loads of input with that about when he’s in each zone … like green, amber, red. I was asking him how does he look and what does he want other people to do? So he had complete ownership over that.” – Rhianna, Lead Behaviour and Wellbeing Practitioner, SEL STOMP team
Impact of STOMP
Through STOMP, Tom has built a strong, trusting relationship with Rhianna, supporting him to engage more openly and discuss topics he had previously found difficult. He is now talking more openly with his family too, as Deborah reflects: “He’s chatting a lot more to me now than he ever has.”
Tom is also taking his medication regularly with support from his family and using his personalised resources to help him regulate his emotions and navigate challenges. He is more aware of what he is doing, and how it impacts the people around him.
Tom has also been referred for specialised psychological support for people with autism, as mainstream mental health services have not been able to meet his needs.
Tom is now preparing to move from home into supported living accommodation, where he will have access to a dedicated care package and ongoing support. The family plans to continue using the strategies and resources developed through the work with the STOMP team, as well as sharing them with his new carers.
For Deborah, STOMP’s person-centred support has been amazing and has made a real difference and recommends the service to other families. She reflects: “[Rhianna] was really easy to talk to. She was very non-judgmental.”
She has particularly valued its holistic approach, which extends beyond medication management to address emotional wellbeing, family circumstances and practical challenges.
“I wasn’t expecting the level of support that we received…I just thought the whole thing was pretty amazing… holistic support around everything… I wish I’d known about it before.” – Deborah
Get in touch
For more information about the project “helping people with a learning disability, who have behaviours that challenge, to avoid harm from psychotropic medicines”, get in touch via email.
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