There has been a lot of recent publicity about health issues in people with learning disability.
Reports by Mencap1 and the Disability Rights Commission,2 as well as an independent government enquiry,3 have suggested that people with learning disability are more likely to die prematurely as a result of inequalities in access to screening and treatment, compared with the general population.
Take care to address the patient first, even if they are accompanied to the consultation by a carer
This is particularly alarming because there is a higher prevalence of chronic health problems in this group.4
The reports recommend that action is required, including annual health checks for everyone who has a learning disability.
In response to these concerns, a directed enhanced service has been introduced this year, whereby practices receive £100 for each annual health check that is offered to a person with a learning disability.
Current policy on services for people with learning disability in England is described by the 'Valuing People' White Paper,5 which promotes the principles or rights, independence, choice and inclusion of people across a range of services including health, education and housing.
It specifies that people with learning disability should have access to mainstream health services (including primary care) and that community learning disability services (CLDS) should have a role in facilitating this process.
Targets for primary care include the identification of everyone with a learning disability on practice lists, and GPs currently receive incentives for doing this under the quality framework.
However, there has been some variation in the application of Read codes for learning disability, with some practices including autism and specific genetic disorders or syndromes, which are not always associated with a learning disability.
There are three essential components to the diagnostic criteria for learning disability (see box, below).
This definition excludes people with normal intelligence who have a specific 'learning difficulty' such as dyslexia.
It also excludes people who have an IQ below 70 but whose social functioning is good and who do not need support with their daily activities. About 3 per cent of the population have an IQ below 70, but the proportion with significant impairment of social functioning and in receipt of services is about 0.4 per cent.
People with mild learning disability generally have some independent living skills and may be able to hold down simple jobs.
People with moderate or severe learning disability have difficulties in language and communication and often require some support in managing self-care, but may be able to perform simple work tasks under supervision.
Those with a profound learning disability usually require constant supervision and support to manage basic skills and have limited language skills.
One of the major barriers preventing people with learning disability receiving appropriate medical treatment is 'diagnostic overshadowing'. This occurs when presenting symptoms are incorrectly ascribed to the individual's learning disability, when the actual cause is an underlying medical or psychiatric problem. For example 'James is hitting his face because he has a learning disability' when actually he has a toothache.
This is an extremely common problem and many studies have demonstrated that it happens with different health professionals, even experienced clinicians. One contributory factor is the lack of staff training in the recognition and treatment of medical problems in people with learning disability.
People with severe learning disability may present with nonspecific symptoms, such as a change in behaviour, and may not be able to verbalise that they are in pain or distress. It is therefore important that changes in behaviour are investigated.
People with learning disability are less likely to seek medical attention and carers are not always good at identifying health needs. This may contribute to delayed presentation. Opportunistic screening may therefore play an important role.
Many GPs find it difficult to communicate effectively with people with learning disability. Such individuals may have limited communication skills, sensory impairment (hearing and visual problems) and problems understanding social interactions (autism).
The problem is accentuated in clinical settings if consultations are rushed and patients are not given enough time to respond to questions. There are simple strategies that GPs can employ to help them communicate more effectively.
Nonverbal cues are important in people with limited verbal skills, for example, hitting or grabbing may be an attempt to gain attention or indicate an unmet need. Finding out how the person communicates can make a significant difference.
Some individuals communicate with a signing system called Makaton, and others may prefer to communicate with picture aids. It is helpful to provide accessible information in the form of pictures and symbols where possible. Carers and staff will also be able to facilitate communication.
Providing a relaxed environment is essential, and booking double appointment slots helps this. Sometimes it may be more appropriate to see the person in their home environment or to see them over a number of consultations, as this will increase familiarity and confidence in the doctor-patient relationship.
If a carer attends the appointment, it is essential that the patient is addressed first and is involved in the discussion and decision making, as this will enhance treatment compliance.
Information should be provided in a simple form, instructions should be clear and patients should be asked to repeat important information to ensure it has been understood.
There are screening tools that can identify medical problems, such as the Cardiff Health Check6 and the Comprehensive Health Assessment.7 Screening tools are also available for identifying mental health problems, such as the Psychiatric Assessment Schedule in Adults with Developmental Disabilities,8 but these require time to complete.
GPs are usually the main providers of medical care for people with learning disability. Awareness of diagnostic overshadowing and ways to improve communication can really help in detecting and treating their health problems.
Subsequent articles in this series will address specific clinical problems, promoting good health and access to healthcare, and assessing capacity and making best-interest decisions.
- Dr Ali is specialty registrar in psychiatry of learning disabilities and Dr Hall is consultant psychiatrist at Tower Hamlets Community Learning Disability Service, East London. Dr Hall is also honorary clinical senior lecturer at Queen Mary College, University of London
Diagnostic criteria for learning disabilities
- A global impairment in intelligence (reduced ability to understand new and complex information and to develop skills), indicated by an IQ less than 70.
- A significant global impairment of social functioning (in at least two broad areas).
- These must be 'developmental' in origin, arising before the age of 18.
4. Gustavson K H, Umb- Carlsson O, Sonnander K. A follow up study of mortality, health conditions and associated disabilities of people with intellectual disabilities in a Swedish county. J Intellect Disabil Res 2005; 49: 905-14.
5. DoH. Valuing People. 2001. www.archive.official-documents.co.uk
6. The Cardiff health check, for people with a learning disability. Available at www.easyhealth.org.uk/fileaccess.aspx?id=1974
7. Lennox N, Green M, Diggens J, Ugoni A. Audit and comprehensive health assessment programme in the primary health care of adults with learning disability: a pilot study. J Intellect Disabil Res, 2001 45(3): 226-32.
8. Moss S, Prosser H, Costello H, et al. Reliability and validity of the PAS-ADD Checklist for detecting psychiatric disorders in adults with intellectual disability. J Intellect Disabil Res 1998; 42: 173-83.