So there I was, watching someone else I knew from my band days begining to make it on the television, feeling sorry for myself, cursing my eating disorder and what it had taken from me, when I got an email from a lady whose sister died of ED-DM1 in June. Logging on to facebook I also recieve a message from a lady whose son died of DKA in January. I am reminded that I have no right to feel sorry for myself, no right at all.
The loss of these young lives (27, 21) makes me so desperately sad. The first time I was contacted by the lady who lost her son I cried for a long time. I cried for her, her son and all of those affected by T1. It was the first real contact I had had with someone affected by a T1 death. This is at heart of what I do at DWED. Ultimately these deaths may have been preventable and that chills me to the bone.
I had a meeting with the Royal College of Nursing's Special Eating Disorders Group last week and it was great. These are the mental health specialists on the front line, and they are desperate for knowledge, training and recognition. The head of the group Jane said how pleased she was that young people like myself were coming through, banner waving. She also said though that it might be hard to keep up the momentum over time.
I respectfully disagreed.
The main thing that I have learnt about ED-DM1 and other diabetes related mental health issues is that the NHS have NO IDEA on how to deal with them and through this ignorance they, in some cases, are making things so so much worse that it's negligent. They are also trying to abdicate responsibility. The NHS are trying to claim that the death of this young man was of 'natural diabetic causes' WRONG WRONG WRONG. THERE IS NOTHING NATURAL ABOUT DYING OF PROLONGED DKA FROM NOT TAKING INSULIN. There were so many disasters with this young mans care, and of the young lady who died. She was told by one councillor that she was FAT. I could go on... it's for another time.
But of course if the death is recorded as 'natural' then no one is at fault, nothing needs to change and no one is held accountable. No one has to look at the systematic failings in the NHS. One of the young women in my group has been hospitalised OVER 90 TIMES,
So no. I don't think I will 'run out of steam' because I will never ever not be FURIOUS at how the NHS failed these poor young people and their grieving families, how they are continuing to fail 1000s of us daily or how they failed me.