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Defining 'Critical Care'

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Friday 2 May 2003 6.54am
I am not quite sure if this is the correct forum, but is there anyone out there who could advise me of where to get information of the policy on defining what level of care would be defined as nursing home needs?

My dad is in hospital and may need to go into a home as my mum no longer thinks she can manage to care for him much longer. He is unable to walk or stand and has lost the use of his right arm, is doubly incontinent. My dad is diabetic and used to manage his insulin and blood testing himself, he has glaucoma , has had bowel cancer, spinal stenosis.

He has worked since the age of fourteen without a break until the age of sixtyfive. I have just found out that if he does go into a home that all his state pension and half his modest work pension will be taken off him .

Someone has told me that if he needed nursing care they could not touch all his state pension and to enquire about the Critical Care policy as defined by the ombudsman? I contacted Age Concern who are going to send Mum some leaflets, they told me to contact the Lower Marsh office of the health authority. Well I did and they told me that they had never heard of it.

My dad is just an ordinary man, he worked as a postman driver as he had polio as a child that left him with a withered leg, his first wife died and left him with three children which he raised single handed. During a routine delivery there was an attempted armed robbery. The gunman shot his friends then him when he smashed one of them with a box, the bullet went into his scrotum then passed into his leg. He was back at work ten weeks later, the idea of having counselling would have made him laugh his socks off.
He is seventy nine this year.

I'm sorry to have strayed from my original point, but if anyone is not bored witless by reading the above can anyone give me any advice for my Mum?
Friday 2 May 2003 8.57am

Your Dad sounds like an extraordinary man.

There is a charity based in SE1 called EAC. Their purpose is to give information so that you can make informed choices about care requirements. I think they will know or know who will know about funding etc.

EAC, 3rd Floor, 89 Albert Embankment, London SE1 7PT Tel: 0207820 1343 Fax: 020 7820 3970
Tuesday 6 May 2003 5.17am
Dear Mel,

thank you for taking the time to answer me I will get mum to phone this week.

and the porcine element takes to the sky...
Friday 30 May 2003 12.07am
I suspect the situation is resolved after this length of time, but I work with older adults in health care and placement/funding is often a confusing issue when it arises. I suspect you were thinking about Continuing Care criteria but very few people are eligible for this.

Let me know if there are any ongoing issues.
Wednesday 11 June 2003 10.15am
Dear Vm,
thank you for taking the time to answer, this is Charitys mum, after trying to manage Don for almost two weeks at home, even with the use of a mechanical hoist, hospital bed, commode etc., I had to admit that it was far too much for me. I have looked after Don for six years, I have changed colostomy bags, emptied commodes, washed and wiped various parts of his anatomy and changed bedding on a very regular basis.

This I could manage to do because he had some strength in his legs and I could get him from his bed/chair to the commode.
Now he is totally unable to stand up let alone walk, He has lost the use of his right hand and his left one is now not much better.
After he started to topple forward and was unable to feed himself properly or even hold a sandwich without dropping it several times I called his G.P. who very very reluctantly agreed to call in. ( we have only had the doctor visit three times since Don has been under the care of that practice in 35 years!)

He said he would contact the hospital on the monday, this was on Friday, on the Saturday Don had toppled forward nonstop, I had to hold his head up and feed him. So I called the ambulance to get him readmitted into Tommy's. They put him into the medical ward and told me yesterday he was ready for discharge, he had a c.t. scan but no results yet, they told me that he had not been doing the same thing there. If the G.P. and district nurse had not seen it I would have thought I was imagining it!

I told the nurse that I would no longer be able to care for him the way he should be, as the sheer effort of getting him into the hoist,
as he is a dead weight, and dragging the hoist around in my tiny living room and pulling at the sling to ensure he is in the correct position far to hard for me now I am older. He weighs twelve stone the flipping hoist is probably the same weight. I have two people wash him in the morning and two at night, I have been offered another visit at lunch time to feed him. I am totally exhausted, mentally and physically. It's heartbreaking to see someone you care for in this position. So I am now looking for somewhere suitable. The home where I would like him to go has a waiting list and he is seventh on the list, they said they would still take him even if he had to be transferred from another home.

The 'social worker pooh poohed that? said that the council probably would not do it?

I am very worried about the future not just for Don, but financially as they will take all his pension off him and half his post office pension. My rent and council tax, still have to be paid...Why should I claim benefits when don has worked since the age of fourteen and worked all hours God gave him in the last few years of his working life to ensure that we would have a bit extra in our old age in the way of his pension.
So if you have not fallen asleep or been bored totally witless by al this and you do have any advice VM I would truly welcome it.
yours in one fingered haste.
Jan :-)
Friday 13 June 2003 2.53am
Such a difficult decision to make, but often placement in a care home is best for somebody who needs a lot of support and care. One person cannot do what you were doing without wearing themselves out, which benefits no one. It is heart-breaking, but from your description, I don't think anyone would say you hadn't tried everything within your human capabilities to keep him at home.

I am not with social services, but I understand that personal pensions follow the person, and that some of this money will go towards the cost of board (but not nursing care, which is paid for by the NHS). Unfortunately it will affect your financial position as you cannot access his state pension.

I would say that working all your/his life and paying taxes entitles you to happily receive the state pension (such as it is), income support if eligible, housing benefit and you will also qualify for a discount on your council tax. I really hate the money wrangles that complicate such distressing situations but the money pot is so limited for many areas of social care and so many people are in need.

Age Concern can often give good advice on many issues that older adults face, including choosing care homes and finances (as well as practical issues like reliable handymen for small jobs around the house). They will be in the Yellow Pages, but let me know if you can't find them. I am also aware of a very active Pensioners Forum in Lambeth and Southwark which might be a good point of contact for you too, although I am not sure how to contact them.

I'm sorry I can't be more helpful about this, but please do not hold back from asking any questions at Tommies, either of the doctors or the social worker. Staff sometimes forget to invite questions but are invariably happy to answer them if you bring them up. The house officer on the ward would be a good first contact for any queries. If need be, make a list!

When someone goes into a care home, the social worker needs to present their case at a meeting ('Panel') for the funding level to be agreed if social services are paying for any part of it. Don sounds very appropriate for a care home with nursing input, and I am sure there will be no problems with agreeing his case. Then a placement officer will identify a home, or negotiate with a desired home to meet their prices (around 500/week is the limit).

There is a reluctance to move people around unnecessarily due to the trauma of the move in the first instance. Transferring to another care home would really only be recommended if the placement breaks down for any reason. There has been some research to suggest that repeated moves are associated with higher mortality risks, so the social worker might have had this mind when you discussed the possibility of going to your chosen home from another home. I can't comment on the manner in which this was done though.

Is Don on a ward in the elderly care unit or in an acute medical ward? People awaiting placements often wait in hospital until a place comes up so there should be no worry of his going home in between unless that's what you want. In the meantime, it isn't a bad idea to keep looking at other homes if you're up to it. One thing though - a waiting list is generally a good sign!

I feel for what you are going through - I have to encourage people to come to this decision regularly and it is never easy, but I think you were right to stop the hospital discharging Don home (especially before all his results were through). There is such pressure on beds that sometimes things are rushed, but even with maximum support at home (2 carers 4 times a day usually) it would have been risky and difficult for you. Placement definitely sounds like the best thing for you and for him. Bear in mind your right to change your mind, even after he has got a place.

Do contact Age Concern, they are very good. Again, let me know of any further queries.
Monday 16 June 2003 2.52pm
On behalf of Southwark Council's Social Services department:

Dear Charity

We were very concerned to read about the problems your father is having, and we've currently been talking to Social Services professionals to ensure you get the appropriate help and support needed.

Since your father first attended St Thomas's Hospital for nursing care, the correct step would be to advise you to firstly contact the Hospital Discharge Team at St Thomas's Hospital on 020 7922 8080. Where they will be able to arrange an assessment of need for your father or alternatively we would be happy to make a referral, on his behalf. You would need to contact us with your father's home address on telephone number: 020 7525 3241 - Older People's Services Team.

However, if you would like to speak to a voluntary agency about any aspect of your father's health confidentially, then please contact the Independent Advocacy Service who offer free advice and support on 020 7703 0261.

Wishing you the best in the meantime.

Post edited (16 Jun 03 15:52)
Tuesday 17 June 2003 6.59am
Dear Beverley,
I am very glad that my daughter started this post, as everyone has been so kind. It is a very difficult time for us all, and the funny thing is where I am a normally get my act together sort of person and can advise others where they can go for advice, I find myself with a mind like scrambled egg!
I would like to get him into St Olaves as soon as there is a vacancy as when I visited Don last night and read his notes the phrase ' N. F. R ' jumped out of the page at me, ( not for rescusitation) and this was to be reviewed within 72 hours.
When I queried this with the staff nurse she explained that it was because Don was poorly on Saturday. Apparently he had a urinary tract infection, and was very confused. I told her that it was probably because his insulin needed to be adjusted! and yes his wife would very much like him to be revived!
I find it very very worrying that on the basis of such a fairly trivial complaint that the decision could be made not to rescusitate should he have a cardiac arrest or lung failure....
So when I visit tonight I will take a copy of his commendation for bravery and a photo of him a few years back, then they might realise that there is a person behind the confused patient who shouts and hollers sometimes at the staff, when deep down he finds the confusion frightening because everything seems out of his control...
thank you again for all the responses,
Jan ( Charitys mum)

and the porcine element takes to the sky...
Wednesday 18 June 2003 11.34pm
Just clarifying - if you have found a prospective home and discussed it with a social worker, your husband has already been referred to the necessary team.

Good to know social services look at these boards and are helpful on this side of the boundary!

Is Don just confused at the moment with the infection or is he generally a bit confused? If he is very distressed, there might be some benefit from a mental health assessment to see if they can make any suggestions to make things a bit easier for him. The doctors can easily ask for this. Also, talk to the doctors about his resuscitation status, not just the nurses.
Thursday 19 June 2003 5.13am
Dear VM,
As you say quite rightly is it great to realise that the Social Services
take an active interest in these boards, the social worker involved with Don at the hospital was contacted by a senior staff member.

The stupid thing is that when Don was first coming home, with an arrogance and conceit that exceeded my actual ability I told her that I did not need any help as we would manage on our own. A phrase that I had often quoted in the years that Don had been ill, and indeed we managed because he still had the ability to stand and with difficulty I could manouvre him to the commode, bed, chair etc. I told Joy ( the social worker ) that I was going to have a plaque inscribed with " It's alright, I can manage" and give it to her for her desk!

So to admit that even with help I could not manage leaves me with a dreadful feeling of failure, despite the fact that when the ambulance was called for Don it took two hefty men to transfer him from his chair into theirs!

I know for sure that the confusion is caused by the infection, and that fact that his insulin will need adjusting to accomodate the ward routine and meal times. Don was exactly the same for the first few weeks in the elderly care ward. When he was at home the only time he exhibited any confusion was when his blood sugars were erratic, which was infrequently as I would adjust the dose of insulin when necessary.

I spoke to the Doctor in charge and he said that there would be a strict policy concerning a decision not to resuscitate and various forms would have to be completed. He said that he in general would discuss with the patient if possible, if to be revived was what the patient would want. If the patient was unable to for any reason he would discuss it with the family. In absence of family or friends that medical staff would have to make that decision.

My God what a responsibilty to have.....
But as charming as the Doctor was I still felt uneasy, what would have happened if I was away on a pre-booked holiday and Don was still 'confused' ?

I hope and pray that Don will be able to get into the home of his choice , which he will feel completely at home in as my beloved sister in law was in it for several years and Don visited it 3 times a week, so he would not feel frightened or worried about being there.
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