FASD, complex needs
and the GP Learning Disability Register:
why it matters

FASD can create complex, lifelong needs, including difficulties with memory, processing, executive functioning, emotional regulation, communication, adaptive behaviour, safety awareness and day-to-day independence. Some people with FASD will meet learning disability criteria; others may have average IQ but still need learning-disability-level consideration because their real-world functioning is significantly affected.

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The important question is not only, “What is their diagnosis or IQ?”

 

It is, “What support do they need to understand, retain, generalise, stay safe, access healthcare and cope in real life?”

 

If the person you support needs substantial scaffolding, has a global developmental delay, intellectual disability, learning-disability-equivalent needs, or is already known to learning disability services, it is worth having a conversation with the GP practice. You do not need a diagnosis to qualify. 

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What can being on the GP Learning Disability Register entitle them to?

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• Reasonable adjustments at the GP practice, such as longer appointments, quieter appointment times, accessible information, support from a carer or trusted adult, and a choice of face-to-face or virtual appointments where appropriate.

• A free Annual Health Check from age 14 onwards, usually once a year, to help identify health needs early and support better physical and mental health.

• A Health Action Plan following the Annual Health Check, setting out agreed health actions, support needs and follow-up.

• Better recognition of health and communication needs, so healthcare staff understand that the person may need extra support to explain symptoms, process information, manage appointments or follow health advice.

• Annual NHS flu vaccination and relevant vaccination support, including COVID-19 vaccination or boosters where offered.

• Recognition of the main carer, so the GP practice can record who supports the person and help the carer attend appointments or speak with professionals where appropriate.

• A free NHS carer’s health check for the main carer, depending on local arrangements and eligibility.

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Why this matters for FASD

People affected by prenatal alcohol exposure may appear more able than they are, especially if they speak well, mask difficulties, copy peers or manage familiar tasks with adult support. However, they may still struggle to remember health advice, explain pain or symptoms, manage appointments, understand risk, regulate distress, follow multi-step instructions or apply learning outside the original setting. Being on the register can help the GP practice recognise these hidden needs and plan care in a more accessible, FASD-informed way.

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Reasonable adjustments: a legal duty

Under the Equality Act 2010, public sector organisations must make changes in their approach or provision to ensure that services are accessible to disabled people as well as everybody else. For families and professionals supporting people affected by prenatal alcohol exposure or FASD, this matters because healthcare access may depend on adjustments to communication, appointment length, environment, information, consent processes, carer involvement and follow-up.

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What to do now?

Contact the GP practice and ask: “Is the person I support on the Learning Disability Register, and if not, could you review whether they should be added because of their FASD-related learning, adaptive functioning, executive functioning and day-to-day support needs?”

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If you would prefer not to raise this by phone or in an appointment, you can write to the Practice Manager or named GP instead. A suggested template letter has been drafted below for you to adapt and send.

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If you decide to attend in person, take any useful evidence with you, such as an FASD diagnosis or assessment, EHCP, SEND reports, paediatric reports, psychology reports, speech and language or occupational therapy reports, social care evidence, DLA or PIP evidence, or notes showing the support needed at home, school, college or in the community.

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For more reading: https://www.england.nhs.uk/long-read/find-out-more-about-the-learning-disability-register/

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• Annual Health Checks for people with learning disabilities.

• Reasonable adjustments for dental care.

• Constipation and people with learning disabilities.

• Pharmacy and people with learning disabilities.

• Eye care and people with learning disabilities.

• Substance misuse and people with learning disabilities.

• Obesity, weight management and people with learning disabilities.

• Reasonable adjustments as a legal duty.

• Preventing falls in people with learning disabilities.

• Cancer screening for people with learning disabilities.

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