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Let the patients decide

I have been in nursing long enough to have witnessed, unfortunately, too many occasions where patients have been treated differently due to their age, appearance or diagnosis

As nurses, our understanding of these situations and our ability to challenge them is often aided by publication of documents that carry some weight. Just think how the national service frameworks have encouraged changes in care for groups such as older people.

When important documents are published they can cause quite a reaction. For example, when the Mental Capacity Act 2005 was published, ethics committees responded with a sharp intake of breath at the mere mention of vulnerable people being involved in research.

As researchers, we consequently have to explain ourselves to death concerning our intentions to do research with participants such as people with learning difficulties. It may come as a surprise to some but many such people are perfectly capable of taking part in research of their own volition.

I have argued with an ethics committee over my intent to include people with dementia in a proposed study concerning stroke. The diagnosis clearly conjured up for some ignorant committee members an image of an incapable elderly person, leading them to think that they knew best.

Fortunately the momentum to ensure that a person’s right to involvement in research is upheld has just gone up a gear. The Mental Capacity Act 2005 Deprivation of Liberty Safeguards (MCA DOLS), which is a supplement to the main MCA Code of Practice (2007), has just passed through parliament. A whole variety of regulations, training and practice implications will
follow for anyone who may have to deal with clients affected by the safeguards that ‘provide a framework for authorising the deprivation of liberty of people who lack the capacity to consent to treatment or care in either a hospital or care home that, in their own best interests, can only be provided in circumstances that amount to a deprivation of liberty’.

It is good news that a Department of Health website is starting to make much information available to clients and their families, not just to health and social care professionals.

It won’t be until next year that the effects of the MCA DOLS work really hit us as regulations come into force. They will potentially affect nurse researchers – especially as a definition for deprivation of liberty is not going to be provided, as all cases are viewed as being different.

In clinical practice, use of sedation could be one such case. Does that mean that non-inclusion of some participants in research because of a diagnosis such as dementia constitutes another example of deprivation of liberty? Let us await test cases with interest.

Tracy Williamson, PhD, MSc, BSc, RN, is research fellow, older people/user involvement, Salford Centre for Nursing, Midwifery and Collaborative Research, University of Salford.

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