Carers play a vital role in the lives of people living with MND, so important in fact that at this year’s symposium a session addressed the fact that the needs of carers are not being met. A memorable quote for Kevin and Jane, two of our regional care development advisers, which they found pertinent was: “the forgotten patient is the caregiver” which was said by R Stutzki from Switzerland.
Jane then commented that as an Association, we are beginning to look at the needs of caregivers and that we must continue to highlight this as an important issue to health and social care professionals in the UK.
Mary O’Brien from the UK then spoke about her experiences from 20 years ago when somebody who was recently diagnosed told her: “I got my diagnosis and my future was taken away”. Both Kevin and Jane then reflected on this quote using their own experiences. In the past few decades, support for diagnosis has dramatically changed around the world. One quote that Kevin finds particularly pertinent from his time at the Association was when somebody living with MND said that their diagnosis was like “falling into a black hole”, but with help from the MND Association, this view has changed over the years.
MND is a devastating diagnosis, but with the right support in place, the diagnosis is now not the ‘black hole’ that it used to be.
This was echoed in the opening session by Robert Miller, in that over the past few decades, a deeper understanding of how to better support people living with MND has progressed. This is obviously not the end of our journey to improve diagnosis, but we are moving in the right direction.
Another talk that Jane and Kevin found interesting was one that looked at the Oregon Death with Dignity Act. Through this act, it is legal for physician assisted suicide for people with a terminal illness. In the session, both sides of the debate were discussed and the presentation then explained how evidence from a recent study revealed that of every 100 people who wanted to speak to a health and social care professional about physician assisted suicide, only ten people ordered the drug and only one person took it to end their life. L Ganzini who led the talk said that the study had shown that the main reason why people wanted to order the drug was so that they would have greater control. Ganzini then went on to explain that because most of the people who wanted to speak about physician assisted suicide received excellent hospice and palliative care, then this high quality level of care played a major role in influencing their decision. This discussion highlighted to delegates that this sensitive issue is not pertinent to just one country.
This is a really good article and bears out so much of the research I did for a book about this exact subject. The website link above will take you to a thumbnail of the book, but in it I describe a California family in which the oldest brother contracts ALS and determines to end his life while he still can. But how? Where? When? Those are the real questions. Years of research went onto providing answers on the ethical, legal and medical fronts, even though the characters are fictional. The real point is that the situation is not, as your post states so clearly states.