Dr Claire Davies offers 10 Top Tips for Primary Care on Caring for Patients with Learning Disabilities During the COVID-19 Pandemic, Including Preparing Patients for Winter
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In the UK, 1.5 million people have a learning disability.1 Patients with learning disabilities are a particularly important group to focus on in the context of COVID-19. Public Health England reported an estimated 956 deaths of adults with learning disabilities from COVID-19 between the beginning of February and the 5 June 2020.2 The COVID-19 death rate for people with learning disabilities was between three and four times higher than for the general population during this period. COVID-19 deaths among people with learning disabilities were spread more widely across adult age groups than in the general population.2 Black, Asian, and minority ethnic groups were also overrepresented; the proportions of COVID-19 deaths among people with learning disabilities from an Asian or Asian British group, or a Black or Black British group, were around three times the proportions of deaths from all causes in these groups in the corresponding period of the previous 2 years.2
Several studies have found that people with Down’s syndrome have a significantly higher risk of dying from COVID-19 of up to 10 times greater than the general population.3,4 As a result, adults with Down’s syndrome have been added to the UK Government list of persons extremely vulnerable to COVID 19 recommended to be added to the shielding category.5
Multimorbidity, including obesity, asthma, and epilepsy, is common in people with learning disabilities.6 They also experience significant health inequalities; a confidential inquiry concluded that 42% die prematurely, often because of delays in diagnosis and problems providing appropriate treatment.7
As part of the third phase response to COVID-19, NHS England has highlighted the importance of restarting care for this vulnerable group. This includes identifying areas for improvement in practice-based services and ensuring that the reinstated evidence-based annual health checks are completed.8
The tips in this article focus on how primary care clinicians can care for patients with learning disabilities during the continuing COVID-19 pandemic.
1. Review the Practice List to Identify Patients with Learning Disabilities
The expected prevalence of learning disabilities is 2.16%.1 However, only about 25% of patients with a learning disability are recorded on practice registers.7 The definition of a learning disability can vary. NICE defines a learning disability by three core criteria:9
- lower intellectual ability (usually an intelligence quotient [IQ] <70)
- significant impairment of social or adaptive functioning
- onset in childhood.
To improve the accuracy of your practice list, review all patients with specific codes that often co-exist with learning disabilities, such as autism and Down’s syndrome.7 Searches for terms such as ‘learning difficulties’ may identify other patients who potentially have a learning disability.10 NHS England and NHS Improvement have published a document of searchable codes.11
Box 1 shows key factors to consider when assessing whether a patient has a learning disability. Several ‘yes’ responses indicate the need for further assessment by the local community learning disabilities team.
| Box 1: Factors that May Indicate a Patient Has a Learning Disability |
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2. Prioritise the List for Review
The annual health check is an evidence-based review recommended by NICE. Although annual health checks were suspended by NHS England during the initial wave of COVID-19, practices are now expected to reinstate them and prioritise reviewing all patients with learning disabilities.8
Reviews may take place face to face or remotely as appropriate. Consider reviewing the list of patients with a learning disability and creating a priority list. This might include those with chronic conditions, obesity, co-existing mental health problems, patients who need blood monitoring, and those who do not usually engage with the annual check. An easy-read leaflet about the health check may help promote its importance to patients who usually decline the review.
3. Make the practice learning-disability friendly
Identifying the need for reasonable adjustments for individuals is part of the Quality and Outcomes Framework (QOF) 2020/21.7 This includes providing easy-read materials that explain the importance of the annual health check. Numerous easy-read leaflets are available for patients, including one on flu vaccination during COVID-19.12
If patients are coming to the practice, try to offer choice around the appointment time, for example after school (if attending) or at quieter times if they have sensory issues.
Allow more time for the appointment. It is important to involve the patient in the review and not address them through their carer, who may hold views contrary to the patient. Patients with severe learning disabilities may still be able to take part in the consultation if enabled. Mencap has produced a guide on communication with this group.13
4. Promote Flu Vaccination
Increasing the number of people with learning disabilities who have received a flu vaccination is part of the QOF 2020/21.7 Consider if reasonable adjustments need to be made for individuals. Some people with learning disabilities may find it intolerable to line up for mass flu vaccination clinics, have problems with social distancing, or have trouble understanding why staff are now wearing masks. Staff may consider briefly showing their face at a distance initially before putting on masks, or wearing name badges that include their photo.
Consider combining flu vaccination with any blood tests or the annual health check. A personal reminder from a healthcare professional who people are familiar with is likely to be effective.
For people who have severe difficulties with injections and blood tests, the local community learning disabilities team can offer psychological therapies and education to enable patients to undertake these procedures with more confidence.
5. Conduct an Effective Annual Health Check
The annual health check is an opportunity to develop a relationship with the patient and to review any chronic conditions. Conducting an annual review is also part of the QOF 2020/21.7 A summary of points to include in the annual health check can be found in Box 2.14
| Box 2: Points to Include in a Learning Disabilities Annual Health Check14 |
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As a minimum, the learning disabilities health check should include:
Learning Disabilities Mortality Review (LeDeR) Programme, NHS North East London Commissioning Alliance. North East London LeDeR: the first 100 cases. Available at: www.eastlondonhcp.nhs.uk/downloads/ourplans/LEDER/North%20East%20London%20LeDeR%20Annual%20Report%202019-20.pdf |
As mentioned above, allow more time for the appointment. Limit distractions and ensure the room is quiet. Communicate slowly and clearly using shorter sentences, simple language, and visual aids if helpful. Practitioners should address the patient directly rather than their carer. Record any preference for communication in the records for future use.
Appointments should cover any concerns of the individual and any problems with hearing, vision, constipation, or swallowing, all of which are more likely in this group.15 Under circumstances outside of COVID-19, it may be appropriate to inspect dentition or enquire about dental visits.
Some groups of patients require syndrome-specific checks. Those with Down’s syndrome are one such group; their checks should include periodic thyroid function tests, dementia and osteoporosis screening for patients aged over 40 years, and annual heart auscultation.16 The Royal College of General Practitioners has produced a toolkit for the health checks and has a more comprehensive list of syndrome-specific checks and the requirements.15
Medication review should be part of the appointment. The STOMP initiative stands for stopping overmedication in people with a learning disability, autism, or both, and is aimed at discontinuing psychotropic medications in those who do not need them.17 Historically, some patients in this group may have been prescribed these medications inappropriately, for example because of behaviour that challenges. Patients with behavioural problems can be referred to the local community learning disabilities team for behavioural support.
Review any ’do not attempt cardiopulmonary resuscitation’ statements in patients’ records to check these are appropriate for the individual and in accordance with their wishes and needs. These statements should not be issued based solely on the presence of a learning disability.
Patients should be provided with a personalised health action plan. Various resources for easy-read action plans are available online.18
6. Consider How COVID-19 Has Affected Patients
Most special schools and day centres have closed during the pandemic and many are yet to reopen. Loss of routine and confinement may mean that any behavioural problems have worsened. Many patients will have had fewer opportunities to exercise and socialise. Many may be feeling anxious, particularly at a time of changing and confusing rules and restrictions. Several easy-read guides explaining COVID-19 and associated issues, such as handwashing and social distancing, are available to download, for example those produced by Mencap.19
Mental health problems are common in patients with learning disabilities.20 These may present in subtle ways, such as a deterioration in function, and require further assessment by the local learning disabilities psychiatric team.
7. Consider the Effect of COVID-19 on Carers
Carer stress can be magnified by lockdown, loss of family members, limited respite services, and closure of day centres. Enquire about carer wellbeing and signpost to carers’ centres, social services, or social prescribing resources. Offer the carer their own appointment if there are signs of mental health difficulties.
8. Consider Safeguarding Risks
Patients with learning disabilities are at increased risk of safeguarding concerns. Pay attention to any subtle signs of abuse or behavioural changes, such as becoming withdrawn, and observe the interaction between the patient and any carer present. Patients should be offered the opportunity to speak to the clinician alone as part of their health check.
9. Be Aware of How Illness May Present in Patients with Learning Disabilities
The LeDeR programme annual report 2019 identified that people with learning disabilities died from an avoidable cause of death twice as frequently as those in the general population.21 Of the reviews of deaths completed for the programme, 1 in 10 identified problems such as delays in diagnosis and treatment, lack of care, lack of communication among agencies, and assumptions made about the person.21 Challenges around involving families in decisions about the patient were also highlighted.21 Respiratory conditions, epilepsy, and sepsis were common causes of death. Untreated constipation also causes death in patients with learning disabilities and may present as behavioural changes.21
Behavioural changes may also indicate sepsis. It may be difficult to obtain observations. Clinicians should be alert to the ‘soft signs’ of sepsis: changes in sleep pattern, changes in toileting routine, reduced appetite, and a reduction in mobility, as well as the usual signs such as fever, breathlessness, and tachycardia.22 Reduced mobility is also a risk factor in patients who die from thromboembolism.21
Have a low threshold for admitting patients if there are any concerns, especially if it is not possible to take observations. Assess and record the patient’s capacity at the time. While views of family members must be obtained, it may be necessary to involve safeguarding teams if these views are in conflict with what appears to be in the patient’s best interests.
10. Provide a Hospital Passport
Hospital passports provide information about patients with learning disabilities when they are admitted to hospital, including their health and their wider wishes and needs. Medical parts of the form can be completed by healthcare staff, while patients and carers can complete sections on how to communicate with the individual, any sight or hearing problems, eating and drinking methods, and likes and dislikes. A copy of the passport should hang at the end of the patient’s bed and also go in the hospital notes. Restrictions on hospital visitors because of COVID-19 mean that it is desirable to complete hospital passports for patients as soon as possible. A hospital passport template can be downloaded from Mencap.23
A COVID-19 ‘Grab and Go’ form has been developed by carers and NHS England, with support from Mencap and other organisations. It tells healthcare staff what they really need to know if someone must go to hospital with symptoms of COVID-19 and should be read in conjunction with the hospital passport. Guidance is available on how to complete the form.24
Summary
Patients with learning disabilities are one of the most vulnerable population groups, all the more so during the COVID-19 pandemic. A large number are likely to be undetected on practice lists. Performing annual health checks and encouraging uptake of flu vaccination are therefore priorities for GP practices during the continuing COVID-19 pandemic.
Dr Claire Davies
GP, London