Today is National Mental Capacity Action Day. This is the day we reflect as professionals on the introduction and implementation of the Mental Capacity Act (2005), one of the key pieces of legislation emerging from the Human Rights Act. It has me thinking about the impact and the changes in the way we work in health services since its introduction and my own awareness of a Human Rights Based Approach to healthcare.


I started my nursing career in 1982. I can clearly remember those humble beginnings, training at a hospital on the outskirts of town, some may say rural. This small site was the home to over 200 people with a learning disability. I can recall that on my first ward there was a man who was on a regular pureed diet. The reason for this was that he had a hiatus hernia. As I looked into the persons case notes there was a letter from a surgical consultant along the lines of ‘this man has an hiatus hernia for which the treatment is a surgical procedure, due to this person’s mental condition it is not seen as beneficial to continue with the treatment’.  In one fell swoop the surgeon had made a unilateral decision that this person would now have a life of pureed diets without any regard to how this would impact on his quality of life. It was as though he had written off this person as somehow not seen as equal to others. This was not an isolated case as there were many others who had the same set of words written on a piece of paper in their case notes.  At that time access to healthcare could be a difficult journey, often reliant upon the goodwill of other professionals or under duress with no recourse to effectively challenge such a decision.


Fast forward over 30 years later and I am a Community Learning Disability Nurse, working with a client who requires an operation. I no longer have to rely on goodwill to ensure that the person gets effective treatment. It is written in law that there is a process all professionals have to follow that recognises a person with a learning disability as an equal citizen and we can ensure that treatment be given. A major paradigm shift has taken place where power has moved to the person with a learning disability.


Now, the decision is not made by an individual professional unilaterally but there is a requirement to consult. Throughout the process, the person with a learning disability is central to the decision making process. Any treatment has to be made in that person’s best interests and how professionals proceed is in the least restrictive manner as possible, in order to respect their human rights. The emphasis is not only on what we do but also on the way that we do it. The framework of the Mental Capacity Act shows how it is a catalyst for good practice and ensures that people with learning disabilities are seen as equal to other members of society, with an equal right to access healthcare.


Throughout the process of supporting the client needing an operation, I was able to assist the doctors and nursing staff in thinking through all the human rights implications. I was able to show that it was not only about the right to life, but the broader impact of the procedures and the need to treat the patient in a way that respected their dignity. A human rights approach allowed me to open a dialogue about how to carry out the operation in a less intrusive and less distressing way for the person.

Ged Carney is a Recovery Practitioner at Autism Initiatives and was previously a Community Learning Disability Nurse. Ged shares his personal reflections on supporting people with mental capacity issues. All views are his own.