Ms Karen Hall:

We have a much more detailed briefing paper which was done in 2010 which I will forward to the committee. Something fundamental which comes out of it is something we said, that there will be abuse in any system. When we look at what has happened internationally and talked to disabled people about this, that little bit of risk, whatever it is, is too much. That risk of abuse affects our lives. That is about saying that if one cannot eliminate that risk of abuse, then it should not be there. I think that is key. Quite a lot of discussion was about palliative care. Many people we are working with who are involved in this are disabled people who are not in a palliative care pathway at all. The care and support to live independently is key to them because without that care and support to live independently, life can become difficult. It is not just about palliative care, but the care all around that.

What came out of our engagement was the big concern about medical professionals being the decision makers. If one looks at the different Bills, including Lord Joffe's Bill, they refer to medical professionals. That is a case of medical professionals again making a judgment on a disabled person's quality of life. That was quite concerning because people had come up against medical professionals who deemed their quality of life in a different way from how they perceived it as individuals with a disability. A practical example of that is when we see "do not resuscitate" orders. We as an advocacy organisation have made challenges to "do not resuscitate" orders that have been put on a disabled person's file without consultation with that person.

An example comes to mind where the term, "This person has a learning disability", was included in the reasoning for putting a DNR on someone's file. That person had been diagnosed with cancer. The medical professional had attached a value to that disabled person's life. The DNR order was not the person's will or preference. However, the decision was made because he or she was not deemed to have capacity. We knew from our work with the person beforehand that the person's preference was to continue with treatment. That is a practical example.