Please find letter sent to above. I will never recover from having to assess whether my mother's cognition needs were high or severe four weeks before we decided to let her die (She had no say and was not present when the GP decided not to tube feed).I am sure that you guys are well aware of the wording to be severe as follows :
Cognitive impairment that may include, in addition to any short-term memory issues, problems with long-term memory or severe disorientation. The individual is unable to assess basic risks even with supervision, prompting or assistance, and is dependent on others to anticipate even basic needs and to protect them from harm, neglect or health deterioration.
My mother did not merely find it difficult to make decisions about key aspects of her life...She was completely unable to do so hence was in a care home against her will (our choice social services best interest decision ) had no say in the choice of home,was told when to eat,had limited choice what to eat,was told to take medicine against her will (some secreted on the carpet eg senna) was not able to go home to see dad when she wished,did not leave the care home freely etc. She would search for dead people and cats.
If my mother was not severely cognitively impaired than she was falsely imprisoned by social services who had no right in making a best interest decision without involving her.The GP also did not try and obtain her consent when he decided not to tube feed her two weeks after the CHC assessment.If she had any ability to make decisions he should have tried to involve her . It was clear to all but the the cruel nursing assessor that my mother did not have any ability to assess basic risks and relied on the care home GP and family to protect her from harm and ultimately to allow her to die without any more treatment.
I quote the nursing assessors words (My mother was unable to contribute to the assessment due to her cognitive impairment.) She was taken off to another room. The irony escaped the nurse assessor.
I doubt the S of S will respond but he is allowing a gross reinterpretation of the decision support tool and causing grief to the family as we were coming to terms with my mothers obvious impending death.
Dear Mr Lansley
Further to my email last night please find below chronology of events.If I had not contacted the nurse assessor before mum died the Panel were to be advised by her to refuse our Appeal for CHC on the 18th June 2010. My mother died moments before the Panel was due to meet.It is shameful and ridiculous.The cause of death was frailty.That does not happen over night.I wish I let the panel meet to refuse her CHC on her death bed it would have been an absolute joke
My mother died on the 18th June 2010.She was a resident at (name of hospital removed by Moderator) . We did not want her to die in hospital. The GP completed an end of life plan indicating that she should not go to hospital. (See End of Life Preference and End of Life Strategy)
July 2009 Stopped eating other than tiny amounts. Estimated weight 55 kgs based on past hospital records (60 kgs in 1998)
August 2009 she had a small stroke,in atrial fibrillation and heart failure. She went to (name of hospital removed by Moderator).weight 51 kgs.She did not qualify for CHC care although she was not eating. Her prognosis was one to two years according to the stroke Consultant. She had an unsafe discharge (weight 45kgs?) according to Rapid Response Team .At home could not eat and became dehydrated.
October 2009 readmitted to (name of hospital removed by Moderator). She had dangerous weight loss to approx 42kgs.Started on Sodium Valproate, (no discussions with my father before starting drug off licence in breach of MCA ) There was rapid artificial weight gain.(42-49kgs.)Sodium Valproate is used for epilepsy and not approved by Nice for dementia (See Cochrane report).It needs more testing before being used to control agitation in dementia.The staff doctor who prescribed it failed to note her concerns re weight loss.Mum did not qualify for CHC and also told she only needed a residential home with dementia and not a nursing home. As she left hospital she was already losing that weight (47 kgs)
February 20010 Care home concerned re weight loss(44 Kgs) and a psychiatrist subsequently prescribed Mirtazapine. April Mum had an fection.
May 13th Full CHC assessment by name removed by Moderator . Mum's weight was 42.5 Kgs but she initially assessed nutritional needs high but reduced to moderate on the 18th May 2010 because mum ate a couple of spoons of yoghurt! . I took footage of mum not eating.
May 26th ????Care home declared mum end of life. She was withdrawn and refusing to eat. May 31st GP declared that mum was at end stage and a care plan was drawn up including a direction that the care home should feed for comfort only.(They had spent hours with a spoon trying to feed her.) The following Tuesday she had "shock" I believe caused by dehydration/movicol and lack of food. The "Out of Hours doctor wanted to send her to hospital but my father did not want her to die in hospital.
9th june 2010 The GP visited.He decided not to give her half a fentanyl patch or a pump driver but to control pain by calpol. We saw the GP no more. He alleged in writing that a GP visited her on the day she died to assess treatment but when challenged because six people were in her room from the early hours until death accepted that there was no such visit until after she died… He also said there was one other visit but again the family were there every day but did not witness this.
16th June the nurse assessor comes back out with a lot of persuasion and decides to recommend CHC funding. Despite all the above she decided mum had a "gradual deteriorating" condition.(She was lying in bed dying with the family surrounding her!) She did not fast track her. She now maintains it was not her job she was just assessing mum for the Appeal and it was the other PCT’s job.
Friday 18th June 2010 mum died. She had no pain relief whatsoever just Calpol. She could not take calpol as she was dying because she could not swallow. During the preceding days she spent hours thrashing and hitting the sheets with her fist. She had complete organ failure. The death certificate recorded death by dementia and frailty.
Why were we still paying for her care as she was dying when even the Catholic church had managed to give her the last rites over two weeks beforehand? Why is the nurse who did that assessment and lied still in employment? Mum clearly had high nutritional needs and there was no recovery from that. This nurse assessor said it was not her responsibility to fast track mum as she was acting as agent for yyyy PCT on the appeal.Whose responsibility was it ?
In the original assessment mum was refused CHC partly because the risk of falls assessment was lowered. However,She fell twice in the care home ( it was a new care home and she was the first resident so initially had one to one car but things for her deteriorated as the care home became fuller with less attention.) My mother left hospital with cataracts and it transpired that she was blind in one eye and little vision in the other.Given all the other problems her risk of falls was about as high as it could be but it was only because the care home was new and empty she did not fall more!
Having to engage in a ridiculous argument about not walking into walls to establish my mothers cognition score as high as opposed to severe was absolutely pathetic.My mothers MME was consistently below 10 and sometimes zero. If she had any genuine insight ( no) than we would argue that she was suicidal because she was willingly refusing food and eating insufficnt to sustain life. Whcih one is?