This is rather vague and long-winded but I am looking for the name of an NHS form signed by a doctor in a Community Hospital where my husband was a patient for five months. Previously in two acute hospitals after fracturing his hip November last year and had surgery in the first hospital Then moved to another hospital for rehabilitation, but eventually moved from there to the local small Community Hospital for rehabilitation for the eldery physically and mentally frail.
My husband has vascular dementia, which deteriorated during hospitalization. Almost seven months ago he attended to his personal needs, was continent, mobile, went out every morning for his newspaper. Now his short-term memory is almost non-existent, balance and mobility is very poor, he is 'High Risk of Falls' (has had several) although he can use a zimmer (when he remembers/is reminded) and eventually he became incontinuent, then doubly incontinent, requires personal care.
He also has Type 2 diabetes, well controlled at home with tablets and diabetic diet. Usually 7-11. Soon after surgery this became erratic, going up into the high teens and over 20. Before being moved to the Community Hospital I was told it had been stabilizd at 10.
Unknown to me until he became very ill in April some months after being in the Community Hospital his glucose level had gradually risen up through the teens, and the 20s and mid-30s. He became very ill, bed bound for several days, delirious, and a staff-nurse admitted it was a life threatening situation.
Apart from a consultant at the hospital one morning a week, there was a young doctor who was sometimes there. The only time he ever talked to me was when I visited and was shocked to find my husband not in the sitting room but in bed and delirious. I saw the doctor on the phone in the office and told a nurse I wanted to speak to him. I was told the diabetic tablet mediction had been stopped and insulin injections started, my husband was now insulin dependent. Had I not spoken to him I might never have known of this as information from nurses was like drawing blood out of a stone.
The doctor said I should see an improvement in my husband in about 5 days time but that he might not return to what he previously was. Once out of bed he spent 11 days strapped into a wheelchair, could not speak, feed himself, do anything, although knew me.
Very gradually my husband did improve. His diabetes is being closely monitored in the care home where he now is, he can now speak, feed himself very well, move around with the zimmer and is more or less back to what he was before the diabetic crisis. Although of course not, and never will be, back to what he was before he fractured his hip and went into hospital.
The hospital consultant did not "recommend" my husband returning home, he would have been at risk, plus other factors. A great shock.
He has now been in a care home for two weeks and two days. On Friday his Named Nurse had a long discussion with me including the 'end of life' subject. To resuscitate or not. We talked at length but briefly, I said that as he presently is if he became ill, a heart attack or whatever, I would wish him to be resuscitated. But if in the future he had reached a stage where he had drastically mentally and physically deteriorated, and had no quality of life at all, then I would agree to DNR - Do Not Resuscitate. But that is a decision I could only make in the future, depending on the circumstances as they might then be. I do not want to lose my husband, but I do know that would be his choice. His nurse wrote this in his folder - his Care Needs.
The nurse said I could read the Care Needs folder at any time and today I sat alone and looked through it. Now to the point of this post.
The very first page was an NHS A4 size Form with red border on the right with large intials printed on it, and elsewhere. It had been signed by the Community Hospital doctor in April on the first day my husband was out of bed and in the wheelchair. I was so upset, and I cannot quote the title and initials - I think there was a 'C' first letter - nor the content . I need to read it again. Although I could not see the words or letters DNR on the form that is what it to be about. I also saw a mention somewhere about relatives.
In an emergency I could imagine a nurse running to check my husband's Care Needs file, seeing this form on the first page and acting on it.
I was shocked to think that unknown to me, his wife and also his Power of Attorney for both Finances and Welfare, such a form had been passed on to the care home, signed by the hospital doctor, and that I had never been consulted. Shocked that the form had been signed the first day my husband was out of bed and in the wheelchair.
I could not make out the handwriting of the "reason" for the signing of this form, but the meaning was obvious. Had my husband again taken seriously ill in the Community Hospital there would have been no attempt to treat him. He would have been allowed to die.
Why? Because he has dementia?
Did that young doctor look at my husband sitting in the wheelchair obviously having lost his abilities, decided he could never recover them, he would be a vegetable, he had dementia, and write him off?
He was wrong.
I know that young doctor spoke to other patients who did not have dementia, and their relatives, but over five months he never ever approached me. The wife and legal representative. Not until that occasion when I asked to speak to him. I had to ask staff-nurses, and information was little.
The care home duty nurse today was not my husband's Named Nurse, she will be back on duty on Friday. But today's nurse removed the form from the folder and said she would contact out GP practice and others.... I *think* she mentioned paramedics. I was so shocked and was not taking it in. But I will speak to the Named Nurse on Friday. Today's nurse also showed me stickers that are put on residents bedroom doors as to whether or not they have to be resusciated. She was going to put one on my husband's bedroom door to say that yes he should be resuscitated.
A long post, I am upset. This is an important NHS form and I want to know who else received a copy of it apart from the care home and our GP practice, and to make sure it is removed from every source where there is a copy.
I do realise that doctors can overrule relatives and make a decision in favour of DNR. But that was not the situation with my husband. Nor does it apply to my husband as he presently is. He has no heart condition, he does have HBP well controlled, and he does have a reasonable 'quality of life'.
This morning for the second time in the care home he was playing carpet bowls, and apparently very well although he has never played the game in his life! How you play carpet bowls with poor balance and using a zimmer I do not know, but he was enjoying himself. Even if when I later saw him he had no memory of it at all!
Sorry for the long ramble, but if anyone can give me any informaton concerning this form, it's title or anything at all, I would very much appreciate it.
Thanks for bearing with me.