Advanced consulting - Consulting with patients with learning disabilities

Ministers have promised to make changes to improve the care of patients with learning disabilities.

Paul Burstow, while serving as care services minister at the DH, said: ‘Those providing care – whether NHS, charity or private sector – have a duty to make sure that care is high quality and safe.’

NHS medical director Professor Sir Bruce Keogh said: ‘One of the measures of a civilised society is how well it looks after the most vulnerable members of its society, so I take very seriously any evidence that this is not reflected in our NHS.’

Over the past decade, numerous DH papers (such as Valuing People in 2001) have highlighted the barriers to patients accessing services more, these being:

• Communication
• Physical environment
• Lack of accessible information (many people who have a learning disability cannot read, so information that has simple language supported by pictures is crucial)
• Physical access
• Fear of health professional
• Poor support
• Lack of preparation
• Lack of time

How to make a difference
Despite all the papers, funding and ministerial promises, access to health services is still not what it should be for people with a learning disability. Remember, doctors are legally bound to make reasonable adjustments to ensure patients have fair and equal access to their GP surgery.

Here are some tips on how to ensure you can make a difference:

• Ensure that you use Read codes for patient details on your computer system. Maximise this with tagged notes, such as ‘Is likely to say yes even if she doesn’t understand. Check understanding by using open questions.’ or ‘All actions should be copied to sister Jocelyn at home, who can "access" patient in a way others cannot.’
• Offer the first appointment of the day to someone with a learning disability. Owing to the nature of their disability, they may have difficulty with crowds, lack of space or waiting for a long time. They may become distressed and upset other patients.
• Use double consultation time to allow for a slower pace of communication.
• Always address your patient with a learning disability first and then the carer, even if your patient is non-verbal or does not have the capacity to make certain decisions.
• Tap into the carer’s knowledge of the patient, from observations of their pain to changes in their behaviour, in particular. However, do be aware that some patients may be supported by agency staff, who may know very little about the person.
• Check whether the patient with a learning disability wants their carer to be in the room with you. For example, they may not want their agency staff support worker, who they met for the first time today, to hear them talking about their sex life.
• Use simple language, without medical or abstract words. For example, saying ‘Take the pills twice a day’ can be confusing. Instead, use words like, ‘Take one pill with your breakfast and one pill with your dinner.’
• Explain the process of the consultation before you start. People who have a learning disability may, because of previous experiences, be frightened of the equipment that is used in a medical examination. Before you do anything, explain and show the patient what you are going to do, tell them why you are going to do it and explain how it may feel. Be honest and tell them if it may be uncomfortable or painful. Trust is important. Remind them they can raise their hand or ask you to stop at any point.
• Remember that a person with a learning disability may have the capacity to consent/dissent to some issues and not others.
• During the consultation, use websites such as Easyhealth, which holds more than 500 easily accessible health information leaflets (in easy language supported by pictures). These can help you to explain what is happening and can be printed off for the patient to take away.

The carer’s expertise
Many people with a learning disability may visit you on their own and do not need support in doing this. However, if they do need support, bear in mind that the carer may hold vital information to help you give the right diagnosis and treatment.

Carers can have a very important role. They often have vital information on the patient’s health, and their regular and irregular behaviour patterns, which enable an accurate diagnosis.

The carer (if regularly supporting your patient and not a new member of staff/agency) may hold the key to how your patient communicates. They may be able to alert you to the most effective communication strategies. For example, they may know how to interpret movements and expressions if the patient is non-verbal.

The carer can be crucial in contributing information towards the best interest of your patient, if your patient does not have the capacity to give consent.

• Dr Coffey is a GP partner in south London