People with dementia failed by Mental Capacity errors
Lack of training for professionals in the Mental Capacity Act leaves people with dementia compromised
A survey carried out by the Alzheimer’s Society has found that many people with dementia are not properly consulted when decisions about them are made.
It also found that many people with dementia feel they are not properly supported in making decisions.
A lack of awareness and understanding of the Mental Capacity Act on the part of health and social professionals is partly to blame and leads to Mental Capacity errors. Not only is there a lack of understanding of what a Mental Capacity Assessment is, but may people seem to confuse the Mental Capacity Act with the Mental Health Act. The two things are not the same.
We heard recently from a family whose mother was in hospital. Prior to various meetings with the discharge team and with the NHS Continuing Healthcare assessment team, the son rightly questioned whether a Mental Capacity Assessment had been carried out.
The reply from the nurse was shocking: She said that that Mental Capacity Assessments don’t apply to people with dementia – and that for people with dementia the only thing that matters is an assessment of their financial means.
Even without the last part of her comment, it’s a shocking example of what goes on.
You can read more about the Alzheimer’s Society survey here, and you can read more here about Mental Capacity Assessments – and when they should be carried out.
My Mum had a Mental Capacity Act assessment following a fall at home. Mum had a diagnosis of mixed dementia 4 years prior to the fall.
MCA assessment was carried out by a Consultant Geriotrician in an A and E department. From the MCA asset: Mum was identified not to have capacity to make decisions.
Geriotrician wanted Mum to stay in hospital for observation but after many hours at A and E and the Geriotrician to decide what to do he discharged Mum because his exact words were “your mother needs to stay in hospital she does not have capacity BUT if I keep her in I will have to fill in a lot of forms”
so even Geriotricians don’t know what to do with outcome of MCA assmt: so unprofessional.
Very let down daughter of her Mother.
Loved one has diagnosis of dementia, cannot make decisions, no capacity. We have all power of attorney (PoA) in place. A social worker (SW) went to care home and carried out an assessment without telling us. This was prior to a CHC meeting, SW had never had prior contact with loved one before.
After a CHC refusal and at that same meeting several days later had decided that there was a social care need and a financial assessment was needed. Apologised verbally that she hadn’t told us, said it was alright as loved one was asleep most of the time. We have no idea what took place, we have no idea if capacity was established, we have not been supplied with notes as requested.
By co-incidence – or not – loved one had nmade a remark to me out of the blue the next day, has no idea of what is saying, soundbites emerge form the mind – no insult meant to loved one but does a parrot understand “pretty Polly”, it just repeats what it hears. Loved one asks if I have got “the money” together, no idea why money is needed. Later says “this is a nice room, can have a telephone installed” – loved one cannot find emergency button or use tv remote control. How would loved one know that the room has phone point?
I wonder what else goes on without our knowledge, loved one gets very distressed and needs gentle handling, is aware that something is going on but can’t sort it out. This is cruel.
My father in law was permitted to refuse post operative (leg re-amputation) meds and that caused him two seizures that both stopped his heart and respiration. His mental capacity was so obviously non existent that I despair of the NHS. He was only having the surgery because of the massive infection and opiate drugs which were of course, affecting his judgement as well as threatening his life.
I asked ward staff: “If you had that level of drugs, gangrene and MRSA infection, a brain injury, dementia and was immediately post operative, would you be allowed to make clinical decisions?” You can believe that the answer was “of course not!” The personnel involved still did not seem to get it that a patient in that combined state does not have the mental capacity, under the 2005 act, to make decisions for themselves. It was crazy to only act in his best interest after he had “died” and so be able to provide the drugs that he had declined. (It is his usual behavior to wave away pain meds until he really feels the pain.) That behaviour almost killed him because he does not always get it (even when “well”) that some of his meds are not just pain killers that he can take later.
It should be noted that my father in law does not have a DNR (Do Not Resuscitate) on file and even when in excruciating pain he would answer that he did not want to die.
Later, and as the result of the complete failure of his re-amputation, he was sent home in less than five hours from the ward, after being admitted to the ED overnight. We arrived ASAP upon being told…….. He was already back in his nursing home. We were not able to influence his treatment in a best interest capacity because they did not want the family intervening and so blocking the bed….. Not when he had a cosy nursing home to go back to.
It is not co-incidental that the hospital’s spokesperson gave a TV news interview about “initiatives” to stop bed blocking by elderly patients just two days later.
His thigh bone protruded from the destroyed stump with a massive infection that was leading to fatal sepsis. (His distraught and very angry GP’s words). It was almost as if someone had just cut all of the skin and muscle from the end of his thigh and exposed the muscle and bone.
When questioned, the CCG sent me a letter stating “The doctors believed that his illness was stable enough to send him home.” And that, “The nursing home facilities were sufficient to provide the care that he needed”. They would not carry out a CHC assessment. They did not carry out the Checklist at the point of discharge.
He was sent to his nursing home to pay for his own very obvious healthcare needs. Those that usually gave him his dinner or fluffed his pillows now had to keep manage his disease state, his wounds and the infections, to keep him alive. (A nurse was available). (Several weeks later he was readmitted for further amputation surgery.)
Once again I asked ward staff. “If you were in that much pain, suffering that level of sepsis, with a brain injury and dementia would you be allowed to make clinical decisions?” Once again “Of course not”. No one seemed to be able to see the similarity of allowing him to make his own clinical decisions and then acting upon a very confused patient’s, only guessed-at wishes.
I later spoke with a (junior?) surgeon who stated “I have only been on the ward for a short while and I know nothing of the Mental Capacity Act.”
So yes Angela is correct….. The NHS and the LA do not really have a handle on the Mental Capacity Act. And if I can read it and research external information and understand its correct application, why is it so difficult for those who are paid to know this stuff to actually learn about it?
Update to above 2014 incidents.
Aug 2015: Father-in-law (FIL) been in hospital again, for almost two weeks. Every single day, had to tell the entire tale to different nurses and doctors about his past seizures and heart stoppages. (with varying levels of understanding or interest from the nurses).
First night he was swivel eyed and unresponsive and it was actually us on our arrival, and not his nurses that noticed. The NHS’s first reaction was to have a long meeting with us to discuss if he was to be resuscitated if his heart stopped. It later proved that he was completely aware of what was being said around him but he could not respond. Just as well we had the majority of the meeting away from his bed.
Had to keep telling the staff that he was not a particularly humorous man and that often when he was saying or doing something that was irrational and did not make sense, that he was not trying to be humorous, he was in fact displaying a mental capacity failure (**** see below). Such as, waving a tenner about and demanding that someone “get me a pint and get one for yourself”. Or how about. “You go and have a game of snooker while I chat to (imaginary pub mate)”. By his description, he was overlaying the ward on the pub and insisting that he knew he was in hospital, could tell us which hospital but then demanding that we get him pint from the bar. He even pointed to the bar and named the manager.
That was taken by a nurse as a bit of banter. The next morning he was in intensive care having had yet another seizure and heart stoppage.
In intensive care almost 4 days now. Every single day we visited. Nurse has asked. Has “XXX” ever had seizures before?” “He’s not on any med’s for it, I just wondered.” This is after discussing in quite some detail with a bowel surgeon and the ITU consultant and stating his full history on the first visit. (His medical records appear to be in two hospitals, even after almost two weeks).
Does no one ever write anything down anymore?
Any way, he is starting to come out of the coma and is responding vaguely. The treatment is great. The procedures and record keeping appears abysmal. It is also abysmal that staff do not assess family and decide whether they are neurotic interventionists or if they actually know a bit about care matters and the needs of the patient in particular.
Throughout this my FiL has not had sufficient mental capacity to make irrevocable decisions. The NHS seems to have disagreed with that point of view, right up to the time of the need for intensive care.
When assessing someone to get NHS CC has anyone gone down the route of getting a Neurological Assessment to prove the Health categorisation?
Hi, does anyone know if I (daughter with LPA) have the right to see the completed Continuing Health Care Checklist or the completed Mental Capacity checklist. Dad’s hospital doctor says he can’t email it outside of the NHS trust? Hope someone can answer my question….
Hi Angela, Thank you for your advice. They are still saying they cannot email it outside of the NHS but I will try to get a hard copy instead. Someone within the trust rang me about the issue of Dad still being in hospital and my not being terribly willing for him to go back home and used the words “evict him”…. so can they really evict a 90 year old WW2 war veteran?