Learning disabilities

Discrimination

Contents

Introduction

No doctor intends to discriminate against his or her patient, but the evidence shows that people with learning disabilities have poorer health outcomes than the rest of the population.

This section examines how healthcare workers and institutions can sometimes inadvertently discriminate against their patients.

Unintentional discrimination

Ways in which people with learning disabilities are discriminated against by health workers and institutions.

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From the GMC's guidance

'You must give priority to patients on the basis of their clinical need…' (GMP, paragraph 56)
'The investigations or treatment you provide or arrange must be based on the assessment you and your patient make of their needs and priorities, and on your clinical judgement about the likely effectiveness of the treatment options. You must not refuse or delay treatment because you believe that a patient’s actions or lifestyle have contributed to their condition.' (GMP, paragraph 57)
'You must not unfairly discriminate against patients by allowing your personal views about their disability to affect your professional relationships or the treatment you provide or arrange.'
(GMP, paragraph 59)

Diagnostic overshadowing

From the GMC's guidance

'If you assess diagnose or treat patients, you must:

a. adequately assess the patient’s conditions taking account of their history..., views and values; where necessary examine the patient

b. promptly provide or arrange suitable advice, investigations or treatment where necessary

c. refer a patient to another practitioner when this serves the patient’s needs.'

(GMP, paragraph 15)

Diagnostic overshadowing has been defined as follows:

  • diagnostic overshadowing (Concept) - once a diagnosis is made of a major condition there is a tendency to attribute all other problems to that diagnosis, thereby leaving other co-existing conditions undiagnosed. (Neurotrauma Law Nexus)

In the context of learning disabilities this means that ‘symptoms of physical ill health are mistakenly attributed to either a mental health/behavioural problem or as being inherent in the person's learning disabilities’ (Emerson and Baines, 2010).

An important part of the doctor-patient relationship is building trust and rapport. If a patient has difficulty communicating this process can take more time and effort - something not every doctor feels willing or able to give. But without making this human connection, doctors can fall into the trap of diagnostic overshadowing, and fail to apply the same diagnostic principles that they would with other patients.

An example of diagnostic overshadowing from Wood for the trees is when the doctor in the hospital assessment unit says, of Marie rubbing her head ‘It may be a pattern of behaviour as a result of her disability' (see Interactive learning Scene 3). He interprets Marie's head-rubbing as being symptomatic of her learning disability and doesn’t investigate it further when it could be an important indicator of Marie’s physical condition.

For ways to help detect and prevent diagnostic overshadowing see:

  • Into practice: discrimination 
  • Into practice: communication with patients - gives some hints and tips about communicating to help build rapport with your patient which can be an excellent preventative measure
  • finally, a further way to prevent against diagnostic overshadowing is to check with the carer, if there is one, about how the patient usually behaves when well. For this and more tips about carers see the 'Working with carers' pages in both The issues and Into practice sections.

Attitudes and assumptions

An example of discrimination

Professor Baroness Sheila Hollins talks about discrimination in relation to her son.

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The attitudes and behaviours towards people with learning disabilities have undoubtedly become more positive over the last few decades. But despite changes in legislation to protect vulnerable groups, people with learning disabilities are still regularly discriminated against. 

Much of the time discrimination is unintentional. As Professor Baroness Sheila Hollins says: ‘I think all of us have prejudices but we perhaps don’t know what they are’.

Dr Matt Hoghton agrees: ‘I think we’re all guilty of making assumptions about people we see in front of us…once we look in to see how rich their life is, then you realise your assumptions were completely wrong’. But many doctors practising today haven’t had the chance to 'look in' by getting to know people with learning disabilities, and see how rich their lives are.

St George’s University of London has a reputation for turning out doctors skilled at treating people with learning disabilities. When studying for the undergraduate medical degree, all students take a course in learning disabilities which involves training by people with learning disabilities and also the chance to go out into the community and assess the general health of a person with a learning disability. 

It could be that this contact is enough to eliminate the apprehension many doctors feel but perhaps don’t feel able to express, when faced with a patient who has a learning disability.

See the Patient Perspectives section for information and links illustrating the full and varied lives of some people with learning disabilities.

Assumptions about quality of life

Beverley Dawkins describes how doctors can sometimes make quick judgements about patients’ quality of life.

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Institutional discrimination

People with learning disabilities, particularly those with profound and multiple learning disabilities (PMLD) or otherwise complex needs, have often suffered as a result of institutional discrimination.

This happens when policies or procedures fail to consider the needs of these people and where they may need reasonable adjustments to be made to the usual procedures in order to receive the care that they need. For example:

  • sending out a reminder letter for an appointment to a patient who can't read
  • preventing family carers from visiting during mealtimes when they could help their loved ones to eat, something hospital staff don't always have time for
  • telephone answering systems can be confusing for many of us but if someone can’t understand or remember the options, or doesn’t know which numbers are which, they could be put off trying to make an appointment at all.

Aiming for equality doesn't necessarily mean treating everyone the same. For people with learning disabilities to achieve the same health outcomes as the rest of the population, doctors may sometimes need to put more effort in, allow more time or do things differently.

By making a reasonable adjustment to your practice, like allowing more time for your first appointment with a patient who has a learning disability, you'll be fulfilling not only an ethical requirement, but a legal one too.

See the Into Practice section for more examples of reasonable adjustments you can make to your practice to help achieve better health outcomes for people with learning disabilities.