Learning disabilities toolkit
Course: LD Toolkit template | RCGP Learning
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The toolkit collects guidance and resources to help GPs, practice nurses and the primary administration team organise and perform quality Annual Health Checks on people with a learning disability.
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People with a learning disability are: less able to understand new information or learn new skills, less able to cope independently than those without learning disability, and this started before age 18. Approximately 2% of the population are thought to have a learning disability, but this is only documented for 0.4% of the general population. On average, people with a learning disability die 20 years younger than the general population, are much more likely to have many co-occuring conditions, and are on many more medications. While there may be specialist learning disability teams involved in a person's care, as GPs we all see patients with a learning disability and have the opportunity to improve the care we provide and so improve the lives of our patients.
NHS UK: overview on learning disabilities
Office for Health Improvement & Disparities: learning disability - applying All Our Health
Mencab: how common is learning disability in the UK?
Learning Disability Service Leeds: learning disability register inclusion tool
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A learning disability results from something which affects the development of the brain either before or during birth or early childhood.
Possible causes include an inherited problem such as Fragile X, chromosomal abnormalities such as Down Syndrome or Turner’s, infections, drugs or alcohol during pregnancy, a premature birth, problems during delivery or illness during early childhood such as meningitis. Often the causes are not known. -
People with a learning disability are more likely to be neurodivergent than the general population, and are less likely to have this recognised or have a diagnosis.
RCGP: curriculum page on neurodevelopmental conditions and neurodiversity
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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 everyone else.
NHS England: reasonable adjustments.
BMA: guidance on mental capacity in England and Wales
GMC: guidance on mental capacity
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Annual health checks are offered to all people with a learning disability aged 14 years or older. More detailed information on them can be found later in this toolkit.
NHS England: annual health checks
Once for Scotland: annual health checks
Southern Health and Social Care Trust: health facilitation team
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Creating learning disability friendly practices in primary care is a vital step toward addressing the health inequality gap faced by people with learning disabilities. Such practices are welcoming and inclusive for patients with learning disabilities and their families or carers, support early identification and diagnosis. They deliver personalised, high-quality care and annual health checks and consistently implement reasonable adjustments to reduce barriers to access.
Achieving this requires whole-team engagement from reception and appointment booking to clinical care. Practices strengthen their approach by appointing a learning disability champion, making effective use of care coordinators, building strong links with community learning disability teams, and participating in local learning disability-friendly practice schemes to embed sustainable, meaningful change. There are many such schemes across England which award a 'Learning Disability Friendly' badge to GP practices designed with input from experts by experience; links to some examples are given below but this is not an exhaustive list.
NHS Coventry and Warwickshire: learning disability friendly badge
Hampshire and Isle of Wight Healthcare NHS: learning disability friendly GP practice award
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The Mental Capacity Act (MCA) 2005 is a legal framework used in England and Wales. It five core principles and uses a two-stage test that is decision-specific and time-specific. It helps protect and empower people aged 16 and over, who may not be able to make decisions for themselves. For people with a learning disability, it provides essential legislation to support decision making without discrimination and ensures a robust process is followed for those unable to make a decision. The links below will help you to make an assessment under the MCA and also give information about equivalent processes in Scotland and Northern Ireland. It is generally outside of the remit of a doctor to make an MCA assessment for a non-medical issue (such as making financial decisions or making a will) - we should use the MCA solely as it relates to medical conditions.
Adults with Incapacity Act - Scotland
Department of Health Northern Ireland: mental capacity act
BMA guidance: mental capacity in England and Wales
NHS England: mental capacity act
Bournemouth University: mental capacity toolkit
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To enable patients to access healthcare it is often necessary to make reasonable adjustments. This involves removing barriers which disadvantage disabled people in physical environments, processes and communication and is a legal requirement under the Equality Act (2010)
Reasonable adjustments may be general, such as disabled parking or accessible toilets, or tailored to an individual. Perhaps someone who becomes anxious in crowded rooms could be offered appointments at a quieter time. Do you have information regarding health interventions such as vaccinations or screening in a more accessible format?
NHS Digital: reasonable adjustment flag
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Effective communication and inclusivity of language is key to improving communication for professionals in health and care. People with a learning disability may need more time for understanding and discussions. You may need accessible resources such as pictures, easy read guides and videos to illustrate your discussions.
The Learning Disability Network: communication top tips for healthcare professionals
NHS Leeds Easy Read patient resources
NHS England: making information and the words we use accessible
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Diagnostic overshadowing describes a situation where the symptoms of physical ill health are mistakenly attributed to a mental health or behavioural problem. If a person with a learning disability communicates without words, the only way they might be able to tell you they are in pain or feel unwell is by banging their head or shouting out. So if someone with a learning disability is displaying 'challenging behaviour', think why might this behaviour be happening and what might someone be trying to tell you?
Royal College of Nursing (RCN): all you see isn't all there is - looking beyond learning disability
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Having a learning disability can leave a person vulnerable to exploitation and their carer becomes responsible for not only the activities of daily living such as good diet and washing, but also protecting their loved ones/clients from harm.
Children and adults with a learning disability are at significantly higher risk of all types of abuse and may not have a voice to raise concerns. Institutional abuse has also been reported several times. As GPs we may be aware of safeguarding concerns which have to be addressed.
RCGP: safeguarding standards for general practice
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LeDeR, 'learning from lives and deaths in learning disability and autism' reviews the deaths of people with a learning disability every year since 2017. The most recent report reviewed the deaths of over 3500 people who died in 2024. The median age of death was 63 and people with a learning disability were found to be dying about 20 years younger than the general population. People with severe and profound disability died even younger.
If a patient of yours dies you can report their death to LeDeR. Reporting a death is not mandatory but it enables a review of notes to improve the understanding of people’s health and to identify areas for improvement
NHS: report the death of someone with a learning disability or an autistic person
KLC: LeDeR report on constipation related deaths in 2021
KCL: Leder 2024 deaths due to pneumonia in people with a learning disability
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The annual health check is a yearly touchpoint where we have the opportunity to meet our patients and supporters when well, to listen to their current concerns, and perform a systematic review of the common co-occurring conditions which may cause serious symptoms, arrange to manage them, and refer on where necessary. A health action plan is delivered to help system partners and supporters to look after the patient in the year until the next check, including prompting optician checks, vaccinations, and documenting goals and referrals.
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Keeping a register or list of people with a learning disability enables them to be invited for annual health checks and regular vaccinations.
NHS England: find out more about the Learning Disability Register – leaflet
Learning Disability Service Leeds: learning disability register inclusion tool
Learning Disability Matters: screening tool for learning disabilities
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All patients with a learning disability are eligible for an annual health check. These start at age 14 in England and Northern Ireland, 16 in Scotland, 18 in Wales. Templates to support the AHC are on GP systems.
NHS Inform - Annual health check for people with a learning disability (Scotland)
NHS Wales. Annual health check
Education Authority Northern Ireland. Annual health checks
Learning Disability Network: learning disability diamond standards in primary care
National Devolpmental Team for Inclusion (NDTI): annual health check resources & guides
RCGP: step-by-step guide to health checks for people with a learning disability
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Patients may need support preparing for an AHC and it may be helpful if they are accompanied by someone who knows them well.
NHS England: annual health checks
Learning Disability Service Leeds: annual health check information for families and carers
Learning Disability Service Leeds: resources for annual health checks
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AHCs need to be accessible; consider how invitations are sent and how you follow up when people are not brought or do not attend.
NHS England: annual health check videos
NHS: annual health checks learning disabilities
Mencap: annual health checks (Easy Read)
Mencap: GP resources for Black, Asian and Minority Ethnic people with a learning disability
Autism Independence: patient leaflet on annual health checks
Autism Independence: the importance of annual health checks for people with a learning disability
Changing Our Lives: 'Chai, Mithai and Challenging Myths: The Facts About Disability' Youtube video
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People with Down Syndrome are more likely to have certain conditions such as congenital cardiac disease and specific guidance exists.
Down Syndrome Medical Interest Group: guidance for medical surveillance
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A Health Action Plan (HAP) should be produced at the end of the AHC to identify a patient’s health needs, including what the patient needs to do to get/stay well, who will help and when this will be reviewed.
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Autism Independence have produced posters in various languages to be used in GP practices' waiting areas. The posters detail support that they provide for people with a learning disability to access their annual health check.
Autism Independence: annual healthcheck poster in English
Autism Independence: annual healthcheck poster in Arabic
Autism Independence: annual healthcheck poster in Polish
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Prescribing is the most common intervention in primary care. People with a learning disability are often prescribed multiple medicines because of co-occurring conditions and to treate behaviours which are described as challenging. Antipsychotics, antiepileptics and benzodiazepines are the most commonly prescribed medications, even when there is no underlying diagnosis of a mental health condition or epilepsy. Adverse outcomes from use of antipsychotic medications include movement disorders, metabolic complications and increased mortality. More detail on this is given later in this toolkit.
Central and North West London NHS Foundation Trust: easy read medication leaflets
University of Birmingham: medicine information - learning disabilities medication guideline
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Prescribing is one of the most common inteventions for people with a learning disability. The average number of repeat prescriptions is about five, compared to one for the general population. Part of this is because of co-occuring conditions such as epilepsy but it may also be because of behaviours reported as challenging.
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About 40% of people with a learning disability take five or more medications, making medication reviews very important.
Royal Pharmaceutical Society: medication reviews
NHS Lancashire & South Cumbria: medications and my mental health
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Antipsychotics, antiepileptics and benzodiazepines are the most prescribed medicines, even when there is no underlying diagnosis of a mental health condition. Nearly 14% of people with a learning disability are on antipsychotic medication even through the majority do not have a diagnosis of a serious mental illness, compared to about 1% of the general population. Adverse outcomes from use of antipsychotic medications include movement disorders, metabolic complications and increased mortality.
University of Birmingham: medicine information - learning disabilities medication guideline
The Pharmaceutical Journal: Reducing antipsychotic prescribing in people with learning disabilities
Dr Rebecca King & Steve Rabino: anticholinergic burden calculator
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One of the reasons that people with a learning disability are more likely to be prescribed psychotropic behaviour is showing 'challenging behaviour' such as being agitated or aggressive. However the agression may not be caused by anger or a mental health problem, but due to fear, pain or being frightened. A person may not be able to communicate this, particularly if they dont have words to describe how they are feeling.
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The 'Stopping Overmedication of People with learning disabilities and autistic people programme (STOMP)' and 'Supporting Treatment and Appropriate Medication in Paediatrics' (STAMP) are NHS England initiatives to tackle concern over the widespread overuse of psychotropic medications.
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About one in five people with a learning disability also have epilepsy. An annual review of medication is important; if the epilepsy is not controlled, refer to secondary care and consider suggesting a seizure diary.
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Nearly 20% of people with a learning disability have constipation. The causes are multifactorial and prescribing guidance has been developed. There are also some helpful videos giving an overview.
NHS England: Constipation resources for people with a learning disability
NHS South West: treating constipation (Youtube video)
NHS South West: how to use macrogol laxatives (Youtube video)
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Adults with a learning disability are 10 times more likely to have a serious sight problem than the general population. 1 in 10 are blind or partially sighted. Children with a learning disability are 28 times more likely than other children to have a serious sight problem. Did your patient have a recent eye check, do they need glasses and if so are they wearing them?
SeeAbility: ten times more likely (Youtube video)
SeeAbility: glaucoma (Easy Read)
Royal National Institute of Blind People: learning disabilities
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All types of hearing loss are more common in people with a learning disability: in the general population the incidence is about 16%, for people with learning disabilities it is about 30-40%. More than 90% of adults with Down Syndrome over 50 years suffer from hearing loss which starts about 20-30 years earlier than in the general population. This can have a profound impact and lead to social isolation, loneliness and frustration which may be contribute to a significant change in behaviour.
NHS England: sight, dental and ear checks in special residential schools
SeeAbility: a parent's guide to hearing care
British Society for Audiology: audiological assessment for adults with intellectual disabilities
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People with a learning disability are much more likely to have dental pain: this may be due to their diet, dependency on others to clean their teeth or because they don’t have regular check ups. Many general dentists look after patients with a learning disability, but there may be specialist dental services for those with very complex needs.
Public Health England: oral care and people with learning disabilities
Health Education England: oral health for people with a learning disability
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Does your patient smoke? Is this recorded on their record? Do they vape? Is this recorded?
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Does your patient drink or use recreational drugs? Is this recorded on their record?
Cumbria, Northumberland, Tyne and Wear NHS Foundation Trust: alcohol and you - easy read information
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People with a learning disability are more likely to die of cancer, partly because they are less likely to be screened, but also due to later presentations. Do you have accessible resources to enable your patients to be screened? Do you consider reasonable adjustments to enable women with learning disabilities to attend for cervical screening?
King's College London: LeDeR 2025 avoidable cancers
NHS England: cervical screening - an easy guide
Public Health England: ovarian cancer (Easy Read)
Macmillan cancer support: breast care and screening (Easy Read)
Thera Trust: checking my testicles
NHS England: abdominal aortic aneurysm screening - easy guide
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The second commonest cause of death in people with learning disabilities is respiratory (14.6%, compared with 16.7% who died of diseases of the circulatory system) with influenza and pneumonia being the commonest infective causes. This highlights the immense benefits this population would get from pneumococcal and influenza vaccination.
Evidence suggests that vaccine coverage rates are lower in those with a learning disability than in the general population; in children, complete coverage rates were significantly lower for those with intellectual disabilities at ages nine months and three years and there is data to show that in the past, only half of adults with learning disability receive a flu vaccination, compared to around 75% uptake for the general population of adults aged over 65.
Pneumococcal vaccination is now part of the childhood vaccination regime and available for people in clinical risk groups as an additional vaccine depending on their age when they were diagnosed with the co-morbidity which entitles them to the vaccination. In the risk group ‘chronic neurological disease’ (the category which includes those with learning disabilities), the mortality rate of influenza per 100,000 population is 37 times higher compared to those in no risk group. With annual influenza vaccination available for all affected since 2014, every GP surgery has the chance to protect some of the most vulnerable people in their community.
NHS: protect yourself from flu, have the flu vaccine
RCGP Learning: vaccination in people with learning disabilities
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People with a learning disability are more likely to be overweight; this can be for a variety of reasons, such as being less active or being dependent on others to buy and prepare their food. For some eating too much can be part of the underlying condition such as Praader Willi.
Some people may be very underweight: possible reasons for this include problems swallowing or aversion to the texture or smell of food which can be associated with neurodiversityBritish Dietetic Association: weight management for people with learning disabilities
Prader - Willi Syndrome Association UK
Public Health England: obesity and weight management for people with learning disabilities: guidance
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About 1 in 400 children live with cerebral palsy and of those about 45% also have a learning disability. Associated cerebral palsy is a common cause of postural and gait problems in people with a learning disability and may mean people can only sit and lie in limited positions. Poor posture can lead to problems such as skin damage or difficulties swallowing.
Public Health England: making reasonable adjustments to postural care services (Easy Read)
Public Health England: postural care and people with learning disabilities - guidance
Bradford District Care NHS Foundation Trust: posture for eating/drinking
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People with a learning disability have high rates of osteoporosis and fractures. Risk factors include low vitamin D levels, poor mobility and a risk of falls. Many medications used to treat epilepsy contribute to lower vitamin D levels. Many people with more profound learning disability are not able to do weight bearing exercise and often spend limited time outside.
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People with a learning disability often have fewer chances to exercise as they may be dependent on others to take them out for a walk or to the swimming pool.
Mencap: a guide to physical activity and sport for people with a learning disability
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People with a learning disability have on average 11 other health conditions. It is important for GPs to be aware of this and be able to manage the complexity that arises.
NHS Digital: health and care of people with learning disabilities
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There is evidence that people with a learning disability are at higher risk of being admitted to hospital. Many admissions can be prevented by interventions such as immunisations. Identifying an acutely unwell patient can be difficult; the RCP have produced guidance. The Health Services Safety Investigations Body have identified ways of improving care once someone is in hospital.
Royal College of Physicians: acute medical care for people with a learning disability
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Epilepsy is very common in people with a learning disability. About 1 in 5 people with mild to moderate learning disabilities have epilepsy compared with less than 1% of the general population. There is also evidence that individuals with a learning disability and epilepsy - particularly those with a moderate to profound learning disability - die at a significantly younger median age than those who died of other causes.
Epilepsy Society: learning disabilities
NICE guidance NG217: epilepsies in children, young people and adults
Sudep Action: SUDEP and seizure safety checklist
Sudep Action: the Clive Treacey safety checklist
NICE guidance NG217 summary: epilepsy and learning disabilities
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Respiratory problems are the commonest cause of avoidable death in people with a learning disability. 15% of all respiratory deaths in people with a learning disability were caused by aspiration pneumonia.
Bradford District Care NHS Foundation Trust: keeping my chest health
Asthma and Lung UK: how to use a pMDI inhaler
Bradford District Care NHS Foundation Trust 2022: vibrovest and nebuliser
Bradford District Care NHS Foundation Trust 2022: CPAP
Bradford District Care NHS Foundation Trust 2022: oxygen
NHS England: RightCare learning disability and aspiration pneumonia scenario
British Thoracic Society: diagnosis and management of aspiration pneumonia
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About 11% of people with a learning disability are recognised as experiencing dysphagia.
Easyhealth: swallowing problems
Bradford District Care NHS Foundation Trust: safe and enjoyable mealtimes
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Diseases of the heart and circulatory system are a common cause of death for people with a learning disability. The 2022 LeDeR report revealed that this was the commonest cause of death, accounting for 17% of all deaths. People with a learning disability have many other conditions that contribute to risk fo CV problems such as obesity, diabetes, inactivity and some chromosomal conditions like Down syndrome. Congenital heart disease is also much commoner in people with a learning disability, usually related to the syndrome causing the learning disability.
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About 50% of people reported to LeDeR were prescribed laxatives at the time of death. 50% were prescribed medication that could cause constipation.
NHS England: constipation resources for people with a learning disability
NHS South West: recognising the symptoms of constipation (Youtube Video)
NHS South West: treating constipation (Youtube Video)
BJGP: constipation in autistic people and people with a learning disability
King's College London: LeDeR 2021 constipation related deaths
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Both type 1 and type 2 diabetes are more common in people with a learning disability than in the general population. Type 2 diabetes arises at an age 10-15 years younger in people with a learning disability than in the general population.
Diabetes UK: what to do if you have type 2 diabetes
Diabetes UK: Improving care for people with diabetes and a learning disability
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Hypohyroidism is more common in people with a learning disability, particularly in those with Down Syndrome. Screening should be considered as part of the AHC.
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LeDeR found that 15% of adults with a learning disability died from cancer, making it the third most common cause of death in the LeDeR cohort. These patients presented at a later stage and died younger than the general population, over half within a year of presentation. Some of the most common cancers are bowel, oesophageal, lung and blood cancers.
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It may be difficult to recognise if someone with a learning disability is in pain. They may not have the words to describe how they are feeling: this is a particular problem for people with a learning disability who communicate without words. Pain may also present with 'challenging behaviour' such as unsual agression or agitation or head banging. Could a change in behaviour be an expression of pain? The Abbey Pain Scale can be used for people who are unable to say if they are in pain.
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People with a learning disability are more likely than the general population to experience common mental health problems, neurodivergence and severe mental illness and are more likely to have antipsychotic medication prescribed. People with lower intellectual ability have higher rates of symptoms of common mental health problems (25%) compared to those with average (17.2%) or above average (13.4%) intellectual functioning. One study found that 54% of people with a learning disability have a mental health problem. Children with a learning disability are four and a half times more likely to have a mental health problem than children without a learning disability.
Mental Health Foundation: people with learning disabilities - statistics
Royal College of Psychiatrists: intellectual disabilities
Southern Health NHS: how to stay well - looking after your mental health
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People with a learning disability are more likely to be neurodivergent than the general population and are less likely to have this recognised or have a diagnosis.
RCGP curriculum page: neurodevelopmental conditions and neurodiversity
RCGP blog: my journey from GP to neurodevelopmental specialist
RCGP neurodiversity special interest group
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Anxiety and depression are more common in people with a learning disability.
Mental health foundation: what can we do to cope with feelings of anxiety?
NICE Guidance NG53: mental health problems in people with learning disabilities (for the public)
Leicestershire Partnership NHS: mental health and learning disabilities
NHS BSW ICB: autism training - anxiety, depression and suicide; alexithymia (Youtube video)
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People with a learning disability are younger when they get memory problems, and we need to look at the possibility of dementia from age 50 onwards. People with Down's syndrome may be at risk of memory concerns from age 35. There are challenges in the identification and assessment of memory problems and delirium may be more challenging to recognise. People may need a joint response from community learning disability teams and memory clinics.
Emedicinehealth: Alzheimer's disease in Down syndrome
Down's Syndrome Association: ageing & dementia
Alzheimer's Society: learning disabilities and dementia
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Many people with a learning disability experience loss at a younger age, particularly as some of their friends may have complex medical conditions. There may also be the added challenge of being able to understand the feelings of loss and sadness and how to communicate.
Cruse Bereavement Support: supporting people with learning disabilities through grief
Learning Disability Nursing: awareness of and access to services, including bereavement support
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The following resources may help to reduce levels of inappropriate prescribing of antipsychotics.
Humber Teaching NHS Foundation Trust: disability distress assessment tool
Medications and my mental health
University of Birmingham: medicine information - learning disabilities medication guideline
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People with a learning disability may not have the words to describe how they are feeling, which is a particular problem for people with a learning disability who communicate without words. They may present with 'challenging behaviour' such as unsual agression or agitation or head banging. Rather than prescribing psychotropic medication consider if there could be other causes for a change in behaviour. Could they have dental pain? Could other life events be causing distress, such as a bereavement, a recent move or a change in friendship groups? Could they be badly constipated? Families or others who know them well may have ideas which can help work out what is happening.
The Challenging Behaviour Foundation
NHS BSW ICB: autism training - sensory overwhelm leading to emotional distress (Youtube video)
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Disturbed sleep is common in people with a learning disability and it is thought that up to 80% may have signficant sleep distrubances. The causes are likely to be multifactorial including seizure activity, sleep apnoea related to weight, reflux and problems with digestion.
Great Ormond Street Hospital for Children: getting a good night's sleep (Easy Read)
NHS Pennine Care: sleep problems (Easy Read)
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A restricted diet, perhaps due to sensory issues or concern about trying new foods, can be a problem in some people with a learning disability, potentially leading to vitamin/mineral deficiencies and their medical consequences.
BJGP life: what is avoidant restrictive food intake disorder?
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People with mental health problems and learning disabilities are overrepresented in the criminal justice system. The identification of people with learning disabilities, both by police custody staff and custody healthcare staff can be poor.
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The definition of learning disability is 'a significantly reduced ability to understand new or complex information, to learn new skills (impaired intelligence), with a reduced ability to cope independently (impaired social functioning), which started before adulthood'. The presence of a learning disability persists throughout a person’s life. People experience many transitions during their lives that have an impact on their well-being.
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Many children with a learning disability will need extra help to become toilet trained. Parents need support during this time.There are some resources available which can be helpful for parents.
ERIC: potty training children with additional needs
Down Syndrome UK: toilet training children with Down syndrome
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Many children with a learning disability find it difficult to exercise or keep active. This may be due to additional physical disabilities but can also be due to difficult finding inclusive sports clubs and activities.
SCOPE: sport and exercise for disabled children and young people
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Children and young people may face additional challenges understanding the changes in their bodies and feelings, as well as some of the practicalities such as dealing with periods.
NSPCC Learning: navigating puberty and sexual development
Sexual Health Sheffield: puberty and your body
NHS Sheffield Children's NHS Foundation Trust: puberty in girls with learning disabilities
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Transition to adult services normally occurs at age 18 and should be done directly; paediatric services should not discharge with a request for the GP to refer to adult services. Difficulties can arise when equivalent adult services do not exist on the NHS. Preparation for transition should start several years before the transfer is made The annual health check for people with a learning disability in England and Northern Ireland should start at age 14 (16 in Wales and 18 in Scotland) and is an ideal opportunity to discuss transition of healthcare services. There are many transitions of importance including the law around capacity and consent.
Mencap: transition into adult services
National Confidential Enquiry into Patient Outcome and Death: the inbetweeners
Together for short lives: transition to adult services pathway
RCGP: Better transitions - improving young people’s transfer from paediatric to adult services
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Many young people with a learning disability are vulnerable and it can be important to understand consent.
Somerset & Avon Rape and Sexual Abuse Support: what is sexual consent (Easy Read)
Twinkl: teaching about consent and healthy boundaries with learners with SEND
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People with a learning disability have the right to inform themselves about gender and sexuality and to receive support to express themselves.
Choice Support: supported loving
Mencap: relationship and sex resources
Brandon Trust: relationships, sex and trust (Easy Read)
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Local sexual health clinics may be able to provide additional support but some may struggle with reasonable adjustments. Often it is assumed that people with a learning disability are not sexually active, hence adding a barrier.
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People with a learning disability are less likely to receive appropriate sexual health education.This is one of the factors contributing to the higher risk of sexually transmitted infections (STIs), pregnancy and sexual abuse amongst people with learning disabilities. Studies have shown that people with a learning disability may have incomplete knowledge of sexually transmitted infections so there is a higher risk of undetected infection.
SH24: what is chlamydia (Easy Read)
InnovAiT: sexual health in people with learning or intellectual disabilities
NHS Lanarkshire: easy read guides on sexual health
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Periods may not be easy for young women with a learning disability, particularly those who depend on others for their care. It is important to document menarche and also support any issues around periods like heavy or painful periods. Printed and online information does not always include period underwear/swimwear, as they have only become mainstream in the last few years, and it may be useful to tell patients or their parents/carers about this option.
Mencap: menstruation (Easy Read)
NHS Southwest: help, I've started my periods
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Women with a learning disability may reach the menopause earlier than the general population particularly women with Down syndrome or Fragile X. Symptoms such as hot flushes or disturbed sleep may not be understood, especially during the perimenopause phase; treating the menopause may improve behaviour which is perceived as challenging.
Selby Town PCN: menopause patches (Easy Read)
Selby Town PCN: menopause in learning disabilities
Penine Care NHS Foundation Trust: menopause (accessible resource)
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The uptake of breast screening for women with a learning disability is much lower than the general population. If women do get breast cancer they also present at a more advanced stage, so screening needs to be accessible and women need to know what to look for. Pre-visits to the screening centre and longer appointments can increase uptake.
Thera Trust: breast cancer resources - know your chest
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Women with a learning disability are signficantly much less likely to have cervical screening than the general population but may be at greaater risk as they have lower rates of HPV vaccination. There is also an assumption of 'asexuality' but all women should be offerred screening and reasonable adjustments offered. Results must also be provided in an accessible format.
NHS England: cervical screening - supporting people with learning disabilities
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Testicular cancer is more common in men with Down syndrome than the general population.
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Recent research has shown that men with a learning disability are much more likely to have prostate cancer symptoms, but less likely to be screened.
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Men with a learning disability are more likely to have an aortic aneurysm due to multiple risk factors including CVD risk, obesity, lack of exercise and genetic conditions such as Fragile X or Down Syndrome, but are less likely to be screened than the general population.
NHS England: abdominal aortic aneurysm screening (Easy Read)
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People with a learning disability experience problems related to frailty at a younger age than the general population. The Chronic Frailty Scale is not valid for people with a learning disability.
A definition of frailty: ‘a medical syndrome […] characterised by diminished strength, endurance, and reduced physiologic function that increases an individual's vulnerability for developing increased dependency and/or death’.Chartered Society of Physiotherapy: frailty index for older people with intellectual disabilities
NICE Guidance NG96: care and support of people growing older with learning disabilities
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About one third of falls in older people with learning disabilities result in injury , with a higher fracture rate than the rest of the population. This may be due to increased risk of osteoporosis. Falls and injuries are avoidable causes of frailty and reduced wellbeing, in addition to causing significant costs in both health and social care.
Glasgow Caledonian University: injury and falls prevention for people with learning disabilities
Public Health England: health inequalities - falls and fractures, accidents and injuries
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Advance care planning is a way to think about and discuss personal wishes for future care and the end of life. Planning ahead ensures that if a person is unable to make their own decisions, health care professionals understand what is important to them and can give reassurance that the right decisions will be made. An advance care plan (ACP) is not a legally binding document and can be amended at any time: it includes how people would like to be cared for at the end of life and what health care professionals should know about them. It is important that this is provided for people with a learning disability and they are supported to make these decisions. The RCGP Daffodil standards have recommendations on how to deliver care to people with a learning disability.
RCGP: the Daffodil Standards - a breakdown by standard
Marie Curie: booklets and videos for people with a learning disability
Learning Disability Nursing: advance care planning
The Victoria & Stuart Project: end of life care planning with people with learning disabilities
Resuscitation Council UK: recommended summary plan for emergency care and treatment (ReSPECT)
Marie Curie: palliative and end of life care for people with a learning disability
Learning Disability Nursing: palliative and end of life care
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All GPs who are RCGP members are welcome to join the RCGP Learning Disabilities Special Interest Group.
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Further training on issues affecting people with a learning disability is available; depending on where you work these may be local or national programmes.
NHS England: the Oliver McGowan mandatory training on learning disability and autism
NHS Wales: Paul Ridd learning disability awareness training
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NHS England commissioned the Royal College of Physicians (RCP) to develop a training programme to meet the medical needs of adults with a learning disability. Learners completing the programme will be able to champion good care and provide clinical leadership in their workplace, enabling practitioners to work in a learning disability physician/practitioner role.
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