"After Daisy died, we discovered that staff were fully aware that Daisy's life was in danger. They did not try to save her, they just documented her decline. This was not an accident, and it wasn't the case that they did not realise how ill she was. They told us they had 'misjudged her quality of life'." - Daisy's mother, writing for Mencap.
In 2007 the learning disability charity Mencap published a report called Death by Indifference. Based on the experiences of six families, all of whom had lost loved ones through ignorance or deliberate neglect on the part of NHS staff, the report highlights the difficulties and the dangers faced by people with learning disabilities who seek healthcare.
"The doctor came up and spoke to us. It took me a moment to realize that he was questioning whether we should go ahead with treating Victoria. He was suggesting that it wasn't worth trying to save her. He didn't know our lovely 33 year old daughter..." - Victoria's mother.
Through its follow-up campaign, 'Getting it right', Mencap is working to change the situation. This is why I am taking part in the Great North Swim's 'Extra Mile', a two-mile sponsored swim across Windermere. Please donate as generously as you can to support Mencap's work.
"Medics need to be educated and simply learn to appreciate other human beings regardless of appearance. A senior member of staff stated that 'parents like you should realise children like these are going to die sooner or later'. This is not true; just because you have a learning disability does not mean you have to die young, but life is precious and whilst we have a chance to live we should be given it." - Daisy's mum.
Note: the Great North Swim 2010 was cancelled by the race organisers due to the high level of toxic blue-green algae in the water. They have deferred my place to 2011. I am going to keep on swimming and fundraising until the day comes - perhaps by the time I jump into that lake I will have reached the target...