Learning disabilities

Into practice: Working with carers

Contents

Introduction

As we’ve examined in The issues: Working with carers, carers can be a vital source of information about your patient. But in certain circumstances it can be a disadvantage if your patient brings their carer with them. On this page we suggest a few things to bear in mind which should help make the carer's presence beneficial to the consultation.  

Learning points

  • Talk directly to the patient, bringing the carer into the conversation with the patient’s permission when clarification is necessary.
  • Move close to the patient and their carer, make eye contact, try to build rapport and establish trust.
  • Tell the patient and carer what is going to happen in the consultation.

Things to bear in mind

How to handle a carer who speaks for the patient

Dr Pepera suggests how best to handle a situation where a carer speaks for the patient.

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Firstly, think about how well the carer knows the patient. Are they a bank staff member from a care home or a family carer? (both situations have potential pitfalls – see The issues for more information).  

Gathering information 

Ask the patient directly. Even someone who knows the patient well may be making assumptions, or may not pick up on clues that you will be able to garner from a proper assessment. Things to support this: 

  • You must still assess capacity directly. 
  • This is particularly important for adult patients with a parent-carer who may find it difficult coming to terms with the fact that they no longer make decisions on their child’s behalf. Some parent carers may even be unaware that they can’t give their consent for their child to receive treatment once they reach the age of 18. See Into practice: Consent and capacity for more tips about assessing capacity.
  • You must still carry out an examination where indicated – some carers can be very helpful in enabling an examination to take place, putting the patient at ease by being there, persuading them to be examined, or even (for an external examination like abdominal palpation) carrying out the examination themselves following your instructions. The patient may then be more willing to allow you to examine them yourself.

Suggestions for involving the carer

Concrete examples 

The carer may be able to suggest specific examples from the patient’s daily life which help to illustrate abstract ideas. For example comparisons with previous illness or level of pain, such as 'Is it worse than when you had tonsillitis when we were at Auntie Ann’s?’   

Assistance with physical examination 

The reassuring presence of a carer can persuade an anxious patient to comply with an examination. A suggestion that was made at one of our Forum theatre events was that the doctor could carry out their examination ‘through’ the carer, at least initially. In other words the doctor would instruct the carer where to touch the patient and what they were looking for. This might then show the patient that the examination would not be painful or scary and they may let the doctor carry it out.

If the patient can’t be persuaded to agree to examination but doesn’t understand the consequences of refusing to be examined (and therefore doesn’t have the capacity to make the decision - see Into practice: Consent and capacity and The issues: Consent and capacity for more information) then the carer may be able to help by gently restraining the patient while they’re examined. Shannon’s mother, Mrs Baillie, does this in GMP in Action (see the interactive case study on our Good medical practice in action website). Do bear in mind though that the use of restraint is a challenging and sometimes controversial issue and will not be appropriate in every situation. 

More information 

For more information and guidance about restraint for people with learning disabilities, have a look at guidance from the Royal College of Nursing - Let’s talk about restraint (pdf).

The British Institute of Learning Disabilities also have a Code of Practice for the use and reduction of restrictive physical intervention and there are videos and other resources on the Social Care Institute for Excellence website.  

How to handle problem situations

Recognise the carer’s needs

Many family carers will be anxious themselves, because their loved one is ill, or because they’ve had a negative experience with a healthcare professional in the past. 

A simple way to deal with this situation is to acknowledge the carer and their concerns, be polite and considerate towards them. 

Check whether family carers are aware of free, easy to access support systems they could benefit from, like:

  • finding a local group through NHS choices postcode search
  • calling Carers Direct (free from UK landlines and mobiles on 0808 802 0202)
  • using the support of an on-line community such as Scope's Online community. This facility is somewhere parents and carers can find support and share experiences, disabled people can meet and connect online and professionals can pick up ideas and swap suggestions. 

You may judge it to be appropriate to ask whether a carer is receiving support for any medical problems they may have, and perhaps even suggest that they make an appointment with you or a colleague. 

Show respect for the patient

Once you've acknowledged the carer's needs, concentrate on the patient. This is often the best way to reassure an anxious carer anyway, because it will show them that:

  • you are taking their concerns seriously
  • you are treating the patient with respect
  • you are carrying out an adequate assessment of the patient.

Recognising the carer's limitations

Dr Matt Hoghton describes some things to bear in mind.

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