My son has a severe learning disability and complex health needs, which mean he is unlikely to live past early adulthood.
Having looked after my son all of his life, made decisions, and consented to care and treatment on his behalf, I was really anxious about what would happen when he became 18 and was seen by the law as an adult.
I was made aware that I would no longer be able to consent for him and that decisions made about his care and treatment would be made in his best interest.
It was explained that the person carrying out his care or treatment would be the one making the decision. Also, that the more complex the decision, the more people should be involved in contributing to it.
For example, if he had been sick, his carer could decide to delay his feed for a while—and that would be a best interest decision. Things like wearing clothing that is right for the weather, doing activities that he likes, providing feeds, and changing his pad when needed are all best interest decisions that we were making every day.
If his medication needs to be changed or he needs an operation, this needs more discussion and more input from professionals. It will be the person carrying out the procedure or operation who will make the final decision on the day as to whether it goes ahead.
As a parent and someone who knows him best, I still have a right to be involved in the discussion and to share the impact that I feel this would have on him. This is a legal right under the Mental Capacity Act (2005).
Consult others
If it is practical and appropriate to do so, consult other people for their views about the person’s best interests and to see if they have any information about the person’s wishes and feelings, beliefs, and values.
In particular, try to consult: – anyone previously named by the person as someone to be consulted on either the decision in question or on similar issues – anyone engaged in caring for the person – close relatives, friends, or others who take an interest in the person’s welfare – any attorney appointed under a Lasting Power of Attorney or Enduring Power of Attorney made by the person – any deputy appointed by the Court of Protection to make decisions for the person.
(MCA (2005) Code of Practice, Chapter 5, page 66)
Knowing this made me feel confident enough to say, “If you are having a best interest discussion about my son’s care, I have the right to be included.” It helped me feel less anxious that things would happen without me being aware.
