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Last updated on April 18, 2014 at 8:18 EDT

Decision Time

November 26, 2004

Researchers have found disturbing deficits in the use of psychotropic drugs for people with learning disabilities, but they are developing tools for improvement

‘WHY AM I taking this tablet?’

‘To make you better.’

‘What would happen if I didn’t take it?’

‘You wouldn’t be able to go out this afternoon.’

Many carers engage in such dialogue with clients who have learning disabilities. Carers are often unclear about the purpose of a particular medication or the implications of taking it.

Pauline Heslop and colleagues at the Norah Fry Research Centre, based at Bristol University, have been working in partnership for the past two years with the Aspects and Milestones Trust and Home Farm Trust charities. They investigated what people understand about the reasons for the prescription of psychotropic medication and the implications of taking it. Their conclusions make disturbing reading.

Although the people interviewed in the study all had learning disabilities, the findings are relevant to others taking regular medication – especially psychotropic medication – nurses, carers, support workers and prescribing doctors.

They make me take it’

A panel of people with learning disabilities was recruited to be co-researchers and this proved invaluable in gaining a better understanding of the views expressed by interviewees. Most of the people with learning disabilities said their medication ‘made them better’ – even, in one case, where the person was experiencing adverse side effects. When asked to describe what their psychotropic medication did, they said it makes them feel ‘calmer’, ‘stops my temper’, ‘stops my fits’, ‘stops my headaches’ and ‘makes my brain function’.

Most of them saw themselves as having no choice about whether or not they took their medication. They had to take the medication because the doctor told them to, or because their carer gave it to them: ‘They make me take it.’ The staff tell me.’ ‘I’ve been told I must,’ and ‘I’m forced to take it,’ were typical comments.

Discussions with carers were equally disturbing. Carers were generally knowledgeable about the prescribed dosage of the medication and when it should be taken, and usually viewed the actual administration of the medication as central to their role. However, most said they thought the individuals had little or no real choice when it came to taking the medication, and that they often did not understand why a particular medication had been started. Many could not recall how long the person had been on medication, or when it was last reviewed, and few were aware of possible adverse effects.

Many carers complained that they were not listened to by prescribers and felt undervalued in their role. This was despite the fact that most of them acted as an access point for further services and as an intermediary between people with learning disabilities and their doctors.

Prescribers had different concerns from patients or carers, the key issue being accountability. Commonly, a psychiatrist will recommend a particular medication regime, but with a GP issuing the prescription. This led to a degree of confusion.

The research team realised there is a pressing need to address these issues so, working together with people who have learning disabilities, they are developing the following tools:

* A checklist of questions someone might want to ask the doctor about medication that could be used by people with a learning disability, carers or family members (see box).

* A booklet in which to record information about an individual’s medication.

* A decision making tool to help people make an informed choice about taking a particular medication.

* A guide for prescribers reminding them of the things they should consider when prescribing psychotropic medication for people with learning disabilities (see box).

* A list of useful sources of information about medications

For further information, visit the Norah Fry Research Centre website: www.bris.ac.uk/Depts/NorahFry

Patient checklist

* What am I taking this medication for?

* What does this medication do?

* What would happen if I didn’t take it?

* How long do I need to take it for?

* How much do I need to take? When do I take it?

* How should I take it?

* Do I need to avoid any other medications, drinks, foods or activities when I am taking this medication?

* What are the possible risks and side effects?

* What should I do if I think they are happening to me?

* What should I do if I miss a dose?

* What would happen if I stopped taking my medication?

Prescribers’ checklist

D Dialogue with the patient

R Reason for prescribing

U Understanding of patient

G Guidelines for its use

S Shared decision making over its use

Simon Jones is community learning disability nurse, Somerset Partnership NHS and Social Care Trust

Copyright RCN Publishing Company Ltd. Nov 3-Nov 9, 2004