Your next patient in A&E may have an Intellectual Disability

Dr Lindsey Stevens (UK) and Dr Carly Bush (UK)

The best and worst aspect of working in an Accident & Emergency setting is that you never know who or what you will be seeing.  Prior to seeing a patient you will often not know anything about their background which makes assessment both exciting and challenging.

Up to 2% of adults have a mild intellectual disability and around 0.35% have a severe or profound disability (BILD).  Given that during a busy week of shifts you may see more than 100 patients, it is likely that you are going to meet some patients with an intellectual disability. It has previously been shown that people with an intellectual disability receive poorer health care than others in the general population. (Lewis 2002, Blake 2003)

What might you need to consider in order to get the most out of your consultation for both you and your patient?

The environment in which you are seeing your patient

Would it ease communication and/or decrease your patient’s stress  to offer a move to a quieter area?? Do you and your patient have any helpers you may need during your assessment?

The hospital may employ a learning disability acute liaison nurse or there may be relevant literature supplied by the learning disabilities team in the A&E.

Consent and Capacity

In UK law capacity should be assumed for all adults unless the patient can be proved to not have capacity. (Mental Capacity Act, 2005, Adults with Incapacity (Scotland) Act 2000) The patient must be given every opportunity to consent and this will almost certainly involve more explanation than with another patient.  Taking the extra time and using additional tools including pictures should build a better rapport, should help you to know how much your patient understands and should result in a better experience for your patient. (Bernal, 2006)

If your patient lacks capacity you must act in the patient’s best interests, using the least restrictive alternative to achieve this. Ideally this involves consulting the patient’s relatives, carers and advocate.  If these people are not immediately available you still need to act in the best interests of the patient.  As a junior doctor, the decision to act in the patient’s best interests and what those interests actually are should always involve a discussion with your senior.  Any decisions made in ‘best interests’ must be carefully documented.

To get more information on consent please see the current GMC guidance or relevant information for the Law in the country where you practise. (Department of Health 2001)

History Taking

One of the most important lessons you are taught at medical school is that most diagnoses come from a good history and after working in A&E it is a lesson that has been proved time and time again.

How does your patient communicate? Non-verbal cues may help you to find out why the patient has presented but taking a full history from a patient who has no verbal communication may be challenging.

Is there a third party present who is offering to support the patient with communicating or with their agreement to give personal history on their behalf? Who is this person in relation to your patient? If you are getting the story from a third party make sure you find out what the patient can tell you themselves – you should never assume a patient has no communication just because a relative begins to talk first. Document who told you what and fully document the details of any carers or other third parties.

The patient or carer may have some useful written information with them, for instance a Hospital Passport or Health Action Plan. It is worth asking if they have anything of this type, which could be helpful in supporting history and possible diagnosis.

Presenting Complaint and Past Medical history

Does the patient know why they have come to A&E?

Did they decide to come alone or did someone support them to attend? Is the complaint at all connected to their intellectual disability? Certain co-morbidities are more prevalent in those with intellectual disabilities and a few questions can screen for the common associations (although it is important to caution against diagnostic overshadowing here).

Co-morbidities such as hearing and visual problems, epilepsy, and behavioural and psychiatric problems are more prevalent in patients with intellectual disabilities. (Blake 2003)

Some causes of intellectual disability can have specific associations, for example a patient with Down's syndrome is at increased risk of hypothyroidism, cardiovascular disease, leukaemia, etc.

Do remember though that people with intellectual disabilities are subject to the same range of medical problems as the general population and may be at increased risk because their access to healthcare is more difficult and they receive less health promotion and screening in primary care. (Lewis 2002)

Drug History

Does the patient have a list of their regular medication or a pre-filled dossette box? Are there any concerns regarding compliance with medication?

Is the patient able to swallow tablets or do they need liquid or parenteral forms of their medications?

Are there medications in the list that you have not previously used? As a junior doctor in A&E you may have had very little experience in using psychotropic medications. Anti-psychotic drugs are widely prescribed to adults with intellectual disabilities in part because of the higher prevalence of mental health and behavioural problems. Around 20-45% of people with an intellectual disability may be on such medication. (Deb 1994, Deb 2006)

Social History

Who does the patient live with and in what family setting or do they live alone? Do they have carers or personal assistants? What activities of daily living can they do themselves and what do they need help with?

This part of the history needs to be as accurate as possible to be able to plan a safe discharge later on.  Also, a patient who normally washes and dresses themselves at home should continue to do so whilst in hospital and should be encouraged to remain as independent as they are usually so as not to lose any skills.

Examination

Your examination will be guided by the history that you have taken beforehand but you should remember that your patient with intellectual disability is entitled to as thorough an examination as any of your other patients.

The examination may be very challenging, especially if your patient has associated physical disabilities. It is important to know what is normal for them, and often you need a family member or carer to help you decide this.

A particular challenge is the assessment of pain. Can the patient tell you if a particular spot is tender?  Be careful to start lightly. If your patient is not able to understand the purpose of your examination you do not want to frighten them by causing them pain. The DisDAT pain assessment tool can be very useful and some patients or carers may have a completed copy or be able to assist you by completing one. (DisDat, 2007)

Neurological examination is often an important part of the work but compliance with a full complicated neurological assessment can be difficult. Therefore, concentrate on the parts of the assessment that you can accurately assess such as tone, reflexes and Babinski response rather than discarding the whole assessment because you cannot record proprioception!

Investigations

Most investigations require some form of consent, be that implied or behavioural consent, for example for a blood pressure recording, or written consent for more invasive investigations.

The patient must be given every opportunity to understand the investigation (see section on Consent above).

Management

Is this a condition that would usually be dealt with at home? Can the patient and carers manage to comply with the prescribed medications or know to seek help early if the problem is persisting?

Is your patient more at risk of complications such as dehydration or secondary infection and would they therefore benefit from a short admission to hospital for fluids and monitoring?

Discharge

Are you confident that the patient is safe to be discharged?

Do you need to clarify aspects of the social history?

Have you given the patient the essential information in the form they are most likely to understand?

Can you arrange appropriate follow up?

Do you need to arrange transport home?

Patients with intellectual disabilities will present to every service within healthcare and all doctors and other healthcare professionals should be confident that they can meet the needs of this group of patients. No two patients are the same and care should be tailored to individual needs. By considering your patient’s specific needs at the point of entry into the health system you can improve their overall experience of health care and the clinical outcome.

References:

BILD, British Institute for Learning Disabilities – Factsheet: Learning Disabilities

http://www.bild.org.uk/docs/05faqs/Factsheet%20Learning%20Disabilities.pdf

Blake P, Kerr M, 2003, Assessment in Primary Care, http://www.intellectualdisability.info/changing-values/assessment-in-primary-care

Lewis MA, et al. 2002. The quality of health care for adults with developmental disabilities. Public Health Reports. Mar-Apr 2002; 117(2):174-84.

Deb S., Fraser W. 1994. The use of psychotropic medication in people with learning disability: towards rational prescribing. Human Psychopharmacology 1994; 9: 259-272.

Bernal J, 2006, Consent and People with Intellectual Disabilities: the Basics http://www.intellectualdisability.info/how-to../consent-and-people-with-intellectual-disabilities-the-basics

Deb S, Unwin G, November 2006, Guide to Using Psychotropic Medication to Manage Behaviour Problems among Adults with Intellectual Disability, University of Birmingham Publication. http://www.ld-medication.bham.ac.uk/documents/section1.pdf

Mental Capacity Act, 2005, http://www.legislation.gov.uk/ukpga/2005/9/contents

Adults with Incapacity (Scotland) Act, 2000, http://www.legislation.gov.uk/asp/2000/4/contents

Department of Health, 2001, Good practice in consent implementation guide: consent to examination or treatment, http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_4005762

Northumberland Tyne and Wear NHS Trust and St Oswald’s Hospice 2008, Disability Distress Assessment Tool http://www.disdat.co.uk

Regnard C, et al, 2007, Understanding distress in people with severe communication difficulties: developing and assessing the Disability Distress Assessment Tool (DisDAT), Journal of Intellectual Disability Research, 2007; 51(4): 277-292