Post 10:

I have wandered off piste a little in these blog posts.  I had expected that I would writing mostly about education topics but found myself reminiscing about my time in Syria.  It started with some pictures on Facebook of Aleppo, where we spent three wonderful and challenging years.  Tonight I had to write a letter to a Parkinson's nurse who had done a survey on the care of Parkinson's patients at our local hospital.  My husband was one of those patients until his death last October.  I find myself unable to write much more so I am going to put here the body of the letter I sent her and tomorrow I will get back to the education world!

"I regret to inform you that my husband, Clifford Crofts, a member of your Parkinson's survey group, died at St. Peter's hospital, on October 10th of last year.  Unfortunately, the care he received as a Parkinson's patient was in part responsible for his death.  He went in to hospital in early August, having aspirated.  He was in relatively good health at this point and it had been decided that he would be given a PEG in case this should happen again.  

His condition deteriorated quickly due to a number of mistakes made with his medication.  It was either forgotten, given at the wrong time or the pharmacy ran out of it completely.  After one of the incidents, Cliff became unable to swallow again and was unable to eat, drink or take his medication.  He was left like this for more than a day at which point, after much prodding on our part,  it was finally decided to insert a tube through his nose and down to his stomach.  It took multiple tries to insert it, all the while he was without medication, food and water.  After each try, he had to be x-rayed as they were unsure whether or not it had been successfully inserted.

This was just the beginning of a litany of mistakes, which eventually led to him improving enough to have the procedure, developing peritonitis due to faulty equipment or human error, and dying.

To make matters worse for me, I subsequently discovered that the information we were given about the risks of the PEG procedure highly underestimated the likelihood of Cliff dying within the first 30 days afterwards.  

Though I realise that Cliff would likely have died within a year, I feel that he was subjected to unnecessary pain and suffering brought about by the lack of knowledge and understanding of Parkinson's disease of the nursing and the medical staff.

There is very little I can say to commend the care he received at the hospital.  There has been an investigation by St. Peter's, the results of which I will be privy to in March, though the coroner has yet to close the case.  The cause of death has been given as natural causes but the coroner is still endeavouring to answer certain questions.

I would be happy to discuss this further with you, should you wish.

I am sure that Clifford would be happy to know that the survey may lead to other patients receiving better treatment."