Annual Health Checks for People with Intellectual Disabilities in General Practice
People with intellectual disabilities have poorer health than the general population and therefore Annual Health Checks have been introduced to improve this situation. This article highlights the reasons for the checks, the preparation involved for practice staff and the check itself.
Dr Ella Baines (UK)
People with intellectual disabilities have poorer health than the general population. Annual Health Checks have been introduced to improve morbidity and mortality in this group. This article is based on the Royal College of General Practitioners’ guidelines for Annual Health Checks in people with Learning Disabilities. It highlights the reasons for the checks, the preparation involved for practice staff and the check itself.
In 2006, the Disability Rights Commission recommended the introduction of Annual Health Checks for people with intellectual disabilities in England and Wales. This was a result of a Formal Investigation into health inequalities in this group. The checks were subsequently introduced in Wales (2006) and in England (2008) as part of a Direct Enhanced Service (DES) to be provided by GP surgeries. Direct Enhanced Services are defined as ‘primary medical services other than essential’. They are nationally or locally agreed.
The checks were initially funded for two years and subsequently extended.
They run alongside the current NHS screening programmes such as cervical screening and cardiovascular health risk assessment. The checks are a reasonable adjustment to improve morbidity and mortality in people with intellectual disabilities.
Annual Health Checks should be offered to all people with intellectual disabilities known to Social Services or local Learning Disabilities teams; encompassing those with moderate, severe or profound intellectual disabilities. In addition, checks should be offered to those with mild intellectual disabilities with at least one other complex need, such as a mental health problem or epilepsy.
Since April 2014, the Annual Health Checks have been extended to cover young people aged 14-17yrs. This is a great opportunity for GPs to get to know young people approaching the transition to adult services and to support them, and their families, through the process.
Why are the Annual Health Checks important?
Several high profile, formal enquiries have highlighted the ongoing health inequalities facing people with intellectual disabilities. As a group, they have poorer health than the general population and a shorter life expectancy. The recent Confidential Inquiry into premature deaths of people with Learning Disabilities (CIPOLD) report has revealed that men with intellectual disabilities died, on average, 13 years sooner than men in the general population, and women with intellectual disabilities died 20 years sooner than women in the general population. Overall, 22% were under the age of 50 when they died.
People with moderate to severe intellectual disabilities face significant barriers to accessing healthcare. They often rely on a carer to recognise their health needs, make an appointment for them, accompany them and adequately advocate on their behalf. Complex physical, behavioural and social problems add to the organisational difficulties. These interactions can lead to delayed presentation of serious conditions.
The checks provide targeted screening for health issues particular to people with intellectual disabilities. Questions about feeding, behaviour, continence and sensory problems (including, but not limited to, vision and hearing) are crucial to understanding how a person lives from day to day. Any change in function should be taken seriously and new symptoms investigated swiftly. GPs need to be proactively aware of the risk of diagnostic overshadowing (attributing symptoms to the underlying intellectual disability). It is important to identify and treat medical conditions early and to monitor and manage chronic disease.
The checks offer a great opportunity for health promotion and can help people to take an active role in their own health and wellbeing. Offering information about co-existing long-term conditions and screening programmes can be useful for the individual and their carer. Any gaps in their immunisation record can be addressed.
There are great benefits to attending the surgery when well rather than sick or in crisis. Carers are able to explain what will happen prior to the appointment and help to minimise stress. The checks are organised in a scheduled appointment of appropriate duration. They help people to become familiar with the practice surroundings and develop relationships with practice staff.
Before the check
The Annual Health Checks provide an invaluable opportunity for GPs and practice staff to get to know those patients on the Learning Disabilities register and their carers. It should be tailored to their specific needs.
Each practice should have a lead GP for intellectual disabilities, supported by other members of the clinical and administration team. It is the GP’s responsibility to maintain the LD register. One of the key recommendations of the CIPOLD report is that those people with intellectual disabilities should be clearly identifiable from their healthcare records. Read code 918e will add a person to the register. It is also important to try to categorise the disability as mild, moderate, severe or profound and list a diagnosis if it is known. The register should be reviewed regularly by liaising with the community learning disabilities team to ensure it is up-to-date and complete. It is important to distinguish between those who have an intellectual disability and those who have an educational learning difficulty (such as dyslexia or dyscalculia).
The lead GP should also attend essential multi-professional training and updates provided by the community learning disabilities team; feeding back to other members of the practice.
It is useful to consider the benefits of having a named receptionist to deal with queries regarding the check. They can improve a patient’s experience of visiting the practice by making simple, reasonable adjustments. For example, addressing difficulties with the automated check-in system or putting alerts or screen messages on a patient’s notes e.g. “Please offer a quiet place to sit, book appointments in the afternoon, patient is non-verbal”.
The Annual Health Check process starts well before the appointment at the surgery. An easy read invitation letter and accessible pre-check health questionnaire should be sent out in the post, inviting patients to attend the surgery.
Ideally, routine blood tests should be carried out a week prior to the check. The tests can be tailored to the individual, but may include Full Blood Count, Renal Function and Liver Function Tests. Other tests depend on any underlying predisposition to certain conditions e.g. Thyroid Function Tests in those with Down’s syndrome or dependant on chronic conditions e.g. anti-epileptic drug levels or HbA1c in those with, or at risk of, diabetes. Follicle Stimulating Hormone should be measured in women who have been amenorrhoeic for more than 6 months.
Charlie is a 27 year old man with severe intellectual disabilities. He is non-verbal and lives with 5 other adults with intellectual disabilities in residential care with round-the-clock support. He has hayfever but no other medical problems. Routine blood tests taken before his health check showed abnormal liver function tests. Further investigation showed that he was Hepatitis B positive. He was referred to secondary care for further management and the other residents were screened for Hepatitis. No one else in the house was found to have Hepatitis B but they were all subsequently immunised.
Electronic templates are available for the annual check, based on the Cardiff Health Check template (see ‘Cardiff Health Check 2’ at www.improvinghealthandlives.org.uk ). The template provides a straightforward and comprehensive overview covering all aspects of a person’s care and current symptoms. Practices may have different ways of carrying out the check using the template. Some opt for a longer appointment with one clinician, whilst others may opt for two appointments; one with a nurse or healthcare assistant and one with a doctor on separate days. The second option offers more flexibility, particularly if someone has difficulty waiting. This strategy is recommended by the Royal College of General Practitioners. In fact, to complete the check in its entirety, it may be necessary to arrange to see someone more than twice, taking things at their pace.
The first appointment
At the first appointment with a nurse or healthcare assistant, it is important to elicit any concerns or expectations regarding the check. Always address the patient before the carer and try, wherever possible, to use appropriate communication aids such as pictures or symbols to explain what is happening. For tips on making a person with intellectual disabilities feel welcome in general practice, please see http://www.intellectualdisability.info/how-to../welcoming-a-patient-with-intellectual-disabilities-into-general-practice
The following points should be addressed at the first visit:
1) Collect information regarding
a. A person’s living and care arrangements. It is important to identify carers so they can be supported and their health needs discussed
b. Details of those professionals involved in their care. This should include documentation of their social worker, involvement with local learning disabilities services and other professionals, such as dentist, optician, speech and language therapist, hospital consultants, voluntary agencies
c. Interests, employment, voluntary work and social life, which may directly relate to their mood and sense of wellbeing
d. Immunisation history
e. Participation in, and results of, national screening programmes
2) Demonstrate equipment as needed and perform general measures (such as height and weight)
3) Check if there has been any significant weight gain or loss. Ask about diet, sensory issues around food and who is responsible for providing food
4) Ask about their levels of physical activity and exercise
5) Perform urinalysis
6) Record details of smoking, alcohol consumption and any recreational drug use. Take the opportunity to provide suitable information for health promotion in these areas
7) Ask about relationships and sexual health, taking into consideration any information that may suggest abuse. Offer advice regarding contraception if appropriate
8) Ask about self examination of breasts/testicles and offer information as needed
9) Look at the electronic record for evidence of co-morbidities. Ensure the person is being recalled for monitoring of chronic conditions such as diabetes and epilepsy
10)Offer annual ‘flu immunisation and one-off pneumococcal vaccination. Teenagers should receive human papilloma virus (HPV) immunisation.
Kelly is a 23 year old lady with severe intellectual disabilities. She lives with her parents. She has no medical problems and enjoys good health. At her Annual Health Check, she was found to have gross proteinuria on urine dipstick. Her examination revealed mild peripheral oedema. She was referred to a nephrologist. She was subsequently diagnosed with Nephrotic Syndrome and was started on steroids.
Seeing the GP
The GP’s main roles are to carry out a thorough systems review and examination, followed by a medication review. These findings can then be used to generate an individual Health Action Plan. There are some symptoms and illnesses that are more common in those with intellectual disabilities. Dysphagia, gastro-oesophageal reflux, obesity, mobility problems, seizures, constipation and incontinence are of particular importance. A holistic approach is needed.
1) General appearance
A person’s appearance gives us much information about their general health and wellbeing. It allows an opportunity to look for signs of systemic or skin disease, neglect, abuse and self-injury. Dental health is also important. Cursory examination of the teeth and oropharyngeal cavity may reveal the need for dental or Ear, Nose and Throat (ENT) review.
2) Nutrition, weight and dysphagia
Most people attending for the health check rely partially or completely on others for their food or nutritional intake. Current weight and any change in weight should be reviewed. Signs of weight loss or malnutrition should stimulate discussion around factors that may contribute to this. Ask about low mood or disinterest in food, social withdrawal and forgetting to eat. Physical difficulties should also be identified. These include an inability to feed themselves, poor dental health causing pain or problems with chewing or swallowing. Any evidence of dysphagia should be identified and investigated promptly. Early involvement of speech and language specialists is of paramount importance.
Obesity is more common in those with intellectual disabilities and is associated with reduced life expectancy and increased health needs. There may be predisposing factors such as the use of antipsychotics or hypothyroidism. As for others in the general population, obesity is an independent risk factor for death from cardiovascular disease. Other associated problems include increased risk of type 2 diabetes, abnormal lipid profile, osteoarthritis, obstructive sleep apnoea. Carers need to be involved in any strategies to address weight problems.
Marco is a 31 year old man with mild intellectual disabilities and Autistic Spectrum Disorder. He lives with his mother and sister and spends much of his time playing computer games. At his Annual Health Check his BMI was calculated at 33 and due to his strong family history, he had blood tests to look for diabetes. His HbA1c was 54 and he was diagnosed with Type 2 Diabetes. He did not want to attend a local diabetes education event with his mother but was given accessible information about the condition by his GP. He was very reluctant to change his diet but agreed to do more exercise as long as it wasn’t in a group. His mother and sister helped him to access a local sports centre and he has been going to the gym and swimming pool. Over the next six months, his weight and HbA1c improved enough so that he didn’t need medication to control his diabetes. His family has supported him in making small and gradual changes to his food intake. He continues to attend the sports centre twice a week and has regular screening for his diabetes.
3) Mobility and musculoskeletal problems
People with intellectual disabilities experience a variety of mobility and musculoskeletal issues. An unstable gait can result from poor muscle tone, contractures, pressure sores or even ill-fitting shoes. Falls are more common in those with intellectual disabilities; three times greater than the general population. Those who are most mobile are most susceptible to falls. Ask about adjuncts such as wheelchairs, sticks or frames, specialist footwear and orthoses. Postural support is also important for those who are less mobile. See Mencap’s guidance on their website www.mencap.org.uk Look for spinal scoliosis, which is more common in some syndromes e.g. Angelman syndrome and Cri Du Chat syndrome. Atlantoaxial instability, torticollis and progressive spasticity in the legs are more prevalent in Down’s syndrome. There is an increased risk of osteoporosis and fractures with antiepileptic drugs, antipsychotics and prolonged immobility. Consider Vitamin D supplementation to reduce the risk of fractures. Injectable progestogens used for contraception cause a reduction in bone mineral density that is reversible when stopped.
Dennis is a 71 year old gentleman with moderate intellectual disabilities. He lives with a couple unrelated to him, who are his carers. He has Hypertension and Chronic Kidney Disease, which are monitored regularly. When asked about his mobility at the Annual Health Check, his carer realised he had been limping, but did not seem to be in any pain. She was worried he may have had a stroke. Examination revealed an unusual gait but no physical abnormality – he was trying to keep his trousers up. His carer helped him buy a belt and the limp resolved.
4) Cardiovascular and respiratory systems
Ischaemic heart disease is one of the leading causes of death in those with intellectual disabilities. Rates are likely to increase as life expectancy continues to improve. Look for risk factors including raised blood pressure, high cholesterol and smoking. Ask about chest pain, shortness of breath and palpitations. Of particular importance in this group is congenital heart disease. It is more common in certain conditions, such as Down’s syndrome, Williams’ syndrome and Noonan’s syndrome. Ensure these patients are being reviewed by an adult congenital heart disease service where appropriate. The pulse, heart sounds and the ankles (for evidence of peripheral oedema) should be examined and investigations arranged if any abnormality is found.
Respiratory disease is a major cause of death in those with intellectual disabilities. Swallowing difficulties, acid reflux and aspiration all increase the risk of pneumonia. Poor uptake of immunisations also increases the risk of respiratory tract infections. Smoking and obesity have been linked with development of asthma and have been shown to predict worse disease outcomes. Ask about cough, shortness of breath, wheeze and sputum (including haemoptysis). In those with asthma, check inhaler technique and ask if a person has an asthma plan. Chest examination should include peak expiratory flow rate and oxygen saturations when possible.
5) Abdomen and pelvis
Abdominal examination may reveal evidence of constipation, distended bladder or occult malignancy. Ask about symptoms that may suggest acid reflux and consider the risk of H Pylori and stomach cancer; both of which are more common in this group. Systems review may include questions about change in bowel habit, rectal bleeding and urinary symptoms. Ask about menstrual cycle, periods and menopause in women, where appropriate. Discuss and offer testicular and breast examinations.
The prevalence of epilepsy amongst people with intellectual disabilities has been reported as at least twenty times higher than for the general population. Seizures are often prolonged, multiple and resistant to drug treatment. Ask about fit type and frequency, anti-epileptic medication, rescue medication and involvement of specialist care. Ensure all patients with epilepsy have a fit management plan.
Lena is a 17 year old young lady with profound intellectual disabilities as a result of a genetic condition. She lives with her parents and 2 younger siblings. She is wheelchair dependant and has epilepsy that is difficult to control. She is on large doses of anti-epileptic medication and is reviewed regularly by a community paediatrician and neurologist. Because she is taking several anticonvulsants, she had blood tests taken, including Vitamin D levels. The results showed a severe vitamin D deficiency, which was treated with high dose vitamin D supplements.
Dementia is more common in people with intellectual disabilities. It tends to occur at a younger age and progresses more quickly than in the general population. It is easy to miss, so ask carefully about reduced ability to perform activities of daily living such as washing or dressing. Ask about any change in behaviour, reduced communication and loss of bladder or bowel control. Questions about memory loss are also important.
Screen for dementia from the age of 40 in those with Down’s syndrome and from the age of 50 in others. For further information, the Down’s Syndrome Association provide a publication entitled ‘Down’s Syndrome and Alzheimer’s Disease; A Guide for Parent Carers’ at http://www.downs-syndrome.org.uk/images/documents/1090/DS_and_Alzheimers.pdf
8) Mental health
The prevalence of mental health problems in people with intellectual disabilities is estimated at somewhere between 20-45%.
Sensory impairment, epilepsy and other chronic disease and social factors (such as fewer friends) increase the chance of mental health problems. Rates of depression are similar to the general population except in those with Down’s syndrome, where the numbers are higher (please see http://www.intellectualdisability.info/mental-health/psychiatric-morbidity-in-adults-with-downs-syndrome). It is important to highlight to carers the importance of recognising early warning signs suggestive of deteriorating mental health. Ask about social withdrawal and change in behaviour as indicators of depression.
Schizophrenia is much more common in those with intellectual disabilities. Anti-psychotic medication is used to treat schizophrenia and has, in the past, been used in those with challenging behaviour, despite a lack of evidence for its efficacy. Side effects associated with these medicines include movement disorders with older anti-psychotics and weight gain, dyslipidaemia and hyperglycaemia with newer ones. Appropriate monitoring (as outlined by the Royal College of Psychiatrists) is crucial to prevent and manage these problems. Clozapine requires regular blood monitoring due to a small but significant risk of blood dyscrasias. Ask about the involvement of specialist care and mental health support. Ensure the person has a mental health care plan.
9) Sensory problems
Adults with intellectual disabilities are ten times more likely to be blind or partially sighted than the general population. Visual impairment may be present at birth or be acquired later in life. Sight loss can be a cause of behavioural change, low mood or social withdrawal. Changes can be gradual and the affected individual may be unable to communicate any changes. Carers may not be aware of deterioration. It is essential to encourage regular review with an optician and ask about the use of glasses. Improving vision may help with independence, self-esteem and mood.
Deafness or reduced hearing can be congenital or acquired. Hearing loss is common in those with intellectual disability and, in particular, those with Down’s syndrome (please see http://www.intellectualdisability.info/physical-health/hearing-impairment-downs-syndrome). It can impact on communication and learning and may manifest as social withdrawal or behavioural change. Ask about any hearing problems or changes noticed by the carer. Check for wax and ask about hearing aids. The Hearing and Learning Disabilities (www.hald.org.uk) website has lots of useful resources, including easy read documents, on topics such as ear care and audiology tests using adaptive techniques.
Michael is 33 and lives with his parents. He has severe intellectual disabilities and is non-verbal. His mum thinks he is depressed as he has stopped his usual hobbies – listening to music and watching TV. He had seemed intermittently distressed but did not seem to be in any pain. At the Annual Health Check he was found to have large amounts of hard wax in both ears, which was treated with olive oil drops. He was noticeably happier after treatment and went back to watching programmes about cars. His mother felt his quality of life had improved significantly and now keeps olive oil drops at home.
10) Medication review
The check provides the opportunity to offer a comprehensive medication review. It is useful to go through each of the medicines individually, looking at the indication for treatment and whether the dose is appropriate. Find out if the patient and carer feel the treatment is working and whether they are experiencing any side effects. Any sedative or cholinergic effects are especially important. Look to see if there are any potential interactions between medicines or contraindications and simplify the prescription list if possible. Consider changing preparations if there is any risk of choking. Offer blister packs if compliance is in doubt. Ensure any necessary drug monitoring is up to date and doses changed accordingly. Offer accessible information about medication if needed.
11) Health Action Plan
At the end of the check, try to summarise the main findings and ascertain whether concerns and expectations have been met. Generate a Health Action Plan according to the individual’s needs. The plan should identify health issues and contain simple, specific actions to improve health. This could include booking a dental appointment, increasing exercise, pureeing foods. Document who should action the points and a review date for each task. Encourage advanced planning depending on the individual’s circumstances. Consider issues such as emergency care and loss of capacity to consent. Excellent examples of Health Action Plans can be found on the EasyHealth website www.easyhealth.org.uk/listing/health-action-plans-(leaflets)
Syndrome specific checks
For some of the more common genetic syndromes associated with intellectual disabilities, there are syndrome-specific checklists. These can be very useful in tailoring the health check to the needs of the individual. Lists can be found in the RCGP Annual Health Checks for Learning Disabilities guidelines.
For example, for people with Down’s syndrome, it is important to actively ask about symptoms suggestive of sleep apnoea, coeliac disease and hypothyroidism. As mentioned previously, dementia screening should take place for those aged over 40 years. Of particular relevance are musculoskeletal problems and symptoms that might indicate acute or chronic spinal cord compression e.g. pain in the neck or torticollis, unsteadiness or deterioration in bladder or bowel control. There are several detailed articles on this website listed under “Physical Health” relevant to Down’s syndrome. Please see http://www.intellectualdisability.info/physical-health
14 to 17 year olds
In April 2014, the Annual Health Checks for people with intellectual disabilities were extended to cover teenagers aged 14 to 17 years old. The check may help identify new symptoms and tackle existing issues before the young person reaches adult services. It is an opportunity for GPs to support young people and their families through transition and involve them in some of the decision-making about their care. The Health Action Plan generated will help review health issues during transition and form part of the Education, Health and Care Plan (EHCP). For more information on the EHCP, see Contact A Family’s website www.cafamily.org.uk/advice-and-support/sen-national.../ehc-plans/
Most young people with significant intellectual disabilities will be known to local community paediatric teams and Social Services. Some will be known to Child and Adolescent Mental Health Services (CAMHS). Many will have a statement of Special Educational Needs and attend a specialist school. At present, identifying all the young people eligible for health checks remains a challenge for GPs and commissioners. Often GPs will receive correspondence about children with multiple and complex needs or medical problems and those who attend specialist schools or CAMHS. However, those young people without a statement of Special Educational Needs are more difficult to recognize. Performing electronic searches for key words such as ‘developmental delay’ or ‘social/communication difficulties’ and certain medications like melatonin and methylphenidate may uncover more young people eligible for the check. Around the country, there are a number of local strategies working towards case-finding. The key is developing clear pathways for information sharing between health, education and social care professionals once a diagnosis has been made or when care/educational provision is altered.
It is important to tailor the check to the young person and think specifically about issues important to teenagers. Explore issues such as puberty, relationships, emotions, bullying, drugs and alcohol. For those able, consider seeing the young person alone so that they have the opportunity to talk in confidence. Ask about things that are going well and things that could be going better. Check any plans for the future and help set appropriate health-related goals.
Annual Health Checks are a reasonable adjustment to address health inequalities. Checks are offered to those with moderate, severe and profound intellectual disabilities. They aim to improve health outcomes by identifying new problems and managing existing ones. Carers should be indentified and their own health needs explored.
The recent CIPOLD report has highlighted the importance using Annual Health Checks proactively. They should be used to plan for the future; adapting care as needs change and implementing Health Action Plans.
This article was first published on this site in 2015