Communicating with people with learning disabilities

In this part of our series on communication, Keri-Michèle Lodge looks at the problems facing people with learning difficulties

I hate doctors," says Jim with his electronic Lightwriter communication aid. Jim is 23 years old and has severe learning disabilities, dysarthria, and an overwhelming dislike of doctors.

There are about 210 000 people with severe learning disabilities like Jim in the United Kingdom.¹ Another 1.2 million have mild or moderate learning disabilities.¹ Learning disabilities decrease a person's abilities to understand, remember, or express information or to learn new skills, affecting their intellectual and social development throughout life.² People with learning disabilities may have difficulties with spoken and written language, coordination, attention, or self control.³ Often, learning disabilities coexist with other conditions, including physical impairments, sensory impairments, or behavioural disorders.

Worse health

People with learning disabilities are a vulnerable and socially excluded group. David Congdon, head of external relations for Mencap, a UK charity working with people with learning disabilities, says that people with a learning disability have worse health than people generally. "They are three times more likely to die from respiratory disease," he says. Other health problems that are more common are dental disease, coronary heart disease, gastrointestinal cancers, sensory impairments, dementia, schizophrenia, epilepsy, thyroid problems, osteoporosis, and sedentary lifestyles. Smoking and alcohol consumption are less common.⁴

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I wish my doctor would talk to me

Despite having greater health care needs than the general population, a recent Mencap survey showed that people with learning disabilities experience problems accessing health care.⁵ Communication problems were a key issue. Some people with learning disabilities find it difficult to communicate pain or distress in an understandable way and may express this by changes in behaviour or personality. They are also less likely to report an illness and symptoms.⁵ Such changes are often obvious to their families or carers and would be taken seriously in a person without a learning disability.⁵ But, Congdon says, "All too often signs of pain or distress have been dismissed by medical staff as being part of the learning disability condition." He explains, "Parents' views that this is not how their son or daughter normally behaves are ignored. As a result, diagnosis is too late and they die."

Diagnostic overshadowing

Under-diagnosis of health needs in people with learning disabilities may also result from "diagnostic overshadowing," a phenomenon highlighted by the UK National Patient Safety Agency and the Down's Syndrome Association. Congdon explains, "This is where doctors look at someone with a learning disability and consciously or unconsciously believe that their health problem is the result of their learning disability and that not much can be done about it." Jim's mum adds, "This causes prolonged stress for families, who find themselves having to fight for medical attention."

Communication problems also arise when people with learning disabilities consult medical practitioners. Geoffrey, aged 56, has Down's syndrome and lives in a house with two other adults with learning disabilities. When Geoffrey needs to see his general practitioner, he goes with one of his care assistants. Although Geoffrey can speak and understand information, his general practitioner does not ask Geoffrey about his symptoms. Instead, the general practitioner consults Geoffrey's care assistant about Geoffrey's symptoms. This frustrates Geoffrey: "I wish my doctor would talk to me."

Jim finds having to go to the doctor frightening. He expresses his fear by screaming and sometimes by biting himself or hitting out at others. "When we took Jim to see the [general practitioner] about his right eye, the [general practitioner] did not get close enough to look at his eye, because Jim was so scared," explains Jim's sister. "But the [general practitioner] said there was nothing to worry about and sent us away. Four years later, Jim now says he can no longer see out of that eye. Because he finds going to the doctors so distressing, we used the camera in my new mobile phone to photograph his eye, and took these to the [general practitioner]. The [general practitioner] thinks it's cataracts and says Jim will need to be examined under general anaesthetic by a consultant," she explains. Jim has previously been examined under general anaesthetic. "It was a horrible experience," says his sister. "At the hospital, he was held down by four people so he could be given the anaesthetic. He hadn't been told why this was happening to him. That would frighten anyone and make them distrustful of doctors."

Another study shows that poor communication contributes to the fear, sadness, and frustration felt by people with learning disabilities during stays in hospital.⁶ Patients with learning disabilities were rarely given adequate information about what to expect in hospital or about their diagnosis. Like Jim, patients often did not understand why procedures were being done, which made them feel anxious and angry.

Consent

The capacity of people with learning disabilities to consent to medical interventions is not routinely assessed. ⁷ Patients with learning disabilities are often assumed to be incompetent to make decisions about their health care. Consequently, they may be subjected to interventions that they have not agreed to.

Conversely, patient "choice" may be used as a reason for non-intervention. "If you asked Jim whether he wanted to go to hospital for an eye examination, he'd start screaming and would say no because he's so frightened of hospitals," says Jim's sister. Jim's mum continues, "It seems easier for consultants to say people like Jim do not consent to care rather than to try to deliver care, especially if fear makes the person challenging." However, some people with learning disabilities said that their doctors had used pictures and explained medical interventions in easy English before obtaining the patient's informed consent.⁶ Jim's mum says, "The community learning disability nurse once mentioned Jim might benefit from a desensitisation programme to decrease his fear of medical staff, but the nurse never got round to organising it, and Jim has now been dropped from the nurse's list."

Worryingly, Congdon says, "Poor care in hospitals is another long standing issue." Mencap's survey found that most hospitals expected parents or carers to provide basic care for patients with learning disability while they were in hospital. Some parents reported that they feared their son or daughter would starve to death if family members did not go and feed them in hospital.⁵ But healthcare staff have a duty of care to all patients, including those with learning disability.

Legislation

Despite equality legislation, including the UK Disability Discrimination Act 1995, the Australian Disability Discrimination Act 1992, and the Americans with Disabilities Act 1990, people with learning disabilities in these countries are discriminated against when trying to access healthcare.⁸ A Scottish NHS report found that assumptions exist among medical practitioners that interventional treatments, such as transplants and resuscitation, should not be offered to people with learning disabilities.⁸

This discrimination may be a consequence of doctors' value judgments about the worth of people with learning disabilities.⁵ Jim's dad says, "Doctors need to develop communication skills so patients and their families are not left feeling worthless because they are ‘not normal' and to avoid creating the impression that patients are just a management problem."

A UK general practitioner with a list of 2000 patients will have approximately 40 patients with a learning disability, eight of whom will have severe learning disabilities, like Jim.¹ Yet, Mencap found 75% of 215 general practitioners questioned had not received any training in learning disabilities.⁵ "Instead of regarding the patients as the problem, doctors need to acknowledge the problem lies in their own lack of knowledge and ability to deal with people with learning disabilities properly," says Jim's dad.

Training

Congdon says, "Medical staff and students need training on what learning disability is, and what health conditions are likely to be more prevalent." In the US, training programmes for healthcare professionals are being developed in partnership with people with a learning disability and their families.⁹ All staff involved in healthcare provision should receive training, including receptionists. Jim's dad says, "The [general practitioner's] receptionists usually give Jim the first appointment so he does not have to spend time in the waiting room, where he would become more anxious."

Training on communication with people with learning disabilities is also needed. Paul Cambridge, a lecturer in learning disabilities at the University of Kent, advises, "Doctors should speak to the person with learning disabilities, not just their carers. They need to communicate using the patient's individual means of communication and explain health care choices and implications in a straightforward way."

Resources are available to help doctors provide accessible information. The Change People organisation has a health picture bank - health related pictures that can be used to help communicate with patients with learning disabilities.¹⁰ Best practice toolkits of easy to read factsheets with pictures and symbols about depression, healthy living, cervical screening, contraception, and living with cancer are also available.

Some people with learning disabilities, communication impairments, or autistic spectrum disorders use Makaton - a language programme incorporating speech, manual signs, and graphic symbols.¹¹ Makaton symbols and Makaton hospital signs are available from a UK Makaton organisation.¹¹ British Makaton has been adapted for 40 countries outside the UK. However, not all countries have Makaton organisations. In some countries, groups of professionals starting to use Makaton are receiving support from tutors in other countries; for example, Kuwait's Makaton organisation coordinates all Makaton activity in the Gulf region and Egypt.¹¹

People with learning disabilities may also benefit from videos and accessible information booklets before admission to hospital to help decrease their anxiety.⁶ Makaton symbols, pictures, photos, and colour coding could also be used, along with a "communication passport" - a photo of the patient along with information on how they communicate, their health needs, their contacts, and their likes and dislikes. Carers in the survey said that healthcare staff should collaborate with carers because they have expertise in how to communicate with the patient and deal with any challenging behaviours.

Proactive approach

Jim's mum says, "Doctors need proactive approaches to ensure people like Jim's health needs are not overlooked." Identifying people with learning disabilities is imperative. In Coventry, general practitioners use codes to identify their patients who have learning disabilities. Patients are offered health checks with a practice nurse and medication reviews by a general practitioner and are also offered help to decide on action plans to improve their health.

Similarly, in New Zealand, a register of 2500 patients with learning disabilities was created. Patients were offered annual health screening. Of the patients screened, 73% required health interventions, some of which were life saving, including provision of a pacemaker and surgery for undetected melanoma.¹² Jim's mum would like to see a multidisciplinary approach to regular health checks. "Community dentists, dieticians, and chiropodists could all be involved," she says.

In February 2005, the UK government announced £41m ($75m; €60m) learning disability development funding for primary care trusts to improve their services for people with learning disabilities and to decrease difficulties in meeting the needs of this group of patients. "Above everything else," says Jim's dad, "healthcare professionals need to recognise that people with learning disabilities are first and foremost people, and should be treated as such at all times."

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2. Australian Learning Disability Association. What is a learning disability? (accessed 21 May 2005).
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8. NHS Health Scotland. Health needs assessment report: people with learning disabilities in Scotland. Glasgow: NHS Health Scotland, 2004.
9. National Institute of Child Health and Human Development. Closing the gap: a national blueprint to improve the health of persons with mental retardation. Rockville: NICHD, 2002. www.nichd.nih.gov/publications/pubs/closingthegap/index.htm. (accessed 21 May 2005).
10. Change Picture Bank. Leeds: Change People. www.changepeople.co.uk/bank.html (accessed 21 May 2005).
11. Makaton Vocabulary Development Project. http://makaton.org (accessed 21 May 2005).
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