My brother is being forced into a care home.
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Paul Waites p...@york.ac.uk
Hi all, Yesterday one of the administrators of our local "primary care team" informed my parents that they wanted to send my brother into residential care, and that this will take place in a couple of weeks time. She did try to sugar things a bit to try and get my parents agreement. However they have (understandably) refused and it looks like John will be "forced" into going. This sudden announcement has all been rather a shock as you might imagine and I do not know what to do next. (If there is anything we can do). So any advice would be welcome.
The background: John has been quadraplegic and on a ventilator since he was four and is now 40. Since the age of eight he has been cared for at home by my parents with district nurse help.... It has been along hard battle for them up against the social and health services, (having read many of the posts in this group lots of you have experience of this). (The authorities have been wanting John in a home for years). We are a close knit family and the fact that John has lived such a long, happy and independant life considering his restrictions has been testament to my parents dedication.
Five years ago with the onset of old age they agreed that York & Selby health trust could organise a care package for John to stay at home. We envisaged that this would last for several years until my parents became too old and John would then have time to find residential care for his future.
It has not worked out like that: Two years ago the local pct took over the care plan. John had five carers then.... Today it has dwindled to two. (Two have left this year purely for financial reasons; they physically cannot live with the pittance of wages they are paid). So now we are at the crunch and the pct have decided that it is best to put John in care.
Some notes: 1). We thought something fishy was going on as no care rota had been set-up for March.
2). Why the sudden short notice? We have offered to put more help into caring for John until they find some extra carers but this falls on deaf ears.
3). When the nurse administrator called she could give not information about the care home, nothing about its facilities. Except that it is in Redcar, some 70miles away, and had been visited by one of the head social workers who found it suitable.
4). My father did get the cost out of her which is ??2500 per week....
Johns care package at home is much less than that....
In conclusion: Basically I believe that they have deliberately "run-down" Johns care.
They now have an excuse to put him in a home which is what they wanted all along. The fact that it costs more to send him away shows that the motives are not financial. It must just be to get rid of the administrative burnden. The short notice to my parents means they do not have time to react.
It is gut wrenchingly sad to see my parents and John treated in such a shoddy cruel fashion by the very people employed to make his life better. John and my parents have never been apart in all those 36 years.
They and John know no other life. (It works for them and they are happy with it, My partner and I only live round the corner from them and we on hand if they need us, and as a family we spend a lot of time together.
It is a very happy family arrangement. My parents and John have made plans for the future but have been caught out by the suddeness of this).
Now the health and scocial services with no regard to my parents or John have decided to destroy the family unit.
My father feels blackmailed and resigned to it all. He has fought long and hard for thirty six years and is now just saying that at seventy three he can't fight the system anymore. Morally it may be wrong but the authorites hold all the cards and will get you in the end.
It is a cl***ic catch 22, If my parents stick out and refuse then the authorites can withdraw care or legally take over, and even if my parents battle on you can be sure that they will make life more difficult in the future for my father and John. I can't say anything against the care home, it may be a great place. A possible place for the future, my parents could even move-up to be near John, who knows but it does need more than a fortnights planning. (I belive that the authorities have known about this plan to send John away for quite some time... My parents being the last to know and at a time scale too short for them to do anything about it).
I am at a loss as to what to do next for the best as I do not want to antagonise a delicate situation and make life harder for the family...
Publicity for example would only be a one day wonder and I'm sure the authorites would find a way of getting back at us. It is tempting though, as far as I am aware John is one of the longest lived permanant vent dependant people in the country.
Many apologies for the long post.
Paul.
pete peterturt...@hotmail.com
No problem for once as your post was riveting to say the least but I understood the powers that be cannot do anything without Johns consent and if they fail to provide adequate care you can get a court order against them. However I can see your fathers point that at his age he doesn't feel strong enough to fight anymore against the system. It is certainly a difficult call for you. Would you be prepared or able to give up your time to fight the system? Is what is happening inevitable one day and by fighting it are your parents going to make themselves ill? These are questions that nobody can answer for you or John and in my case I can only say to you that I wish you all the success that you need to be a happy family again considering that all arrangements end as life its self ends or becomes more feeble with age. I am sorry.
smicker
pete peterturt...@hotmail.com
That was my initial reaction too. However having gone through numerous legal proceedings where I had to act for myself I can only say it is a very exhausting routine. It's easy enough if you can get a solicitor and you are not 73. I was doing it when I collapsed at 57 and nearly died. The wrongs have to be balanced against the ability of Johns parents to carry on fighting IMHO.
smicker
Paul Waites p...@york.ac.uk
Yes I needed to get a bit off the old chest, I understood the powers that be cannot do anything without Johns consent The way I had it explained to me was that John would be admitted to hospital. As there is no medical reason for this the health would fine social.... The social services would then have to find an alternative solution.... which would mean that he would end up in the care home anyway.
However I can see your fathers point that at his age he I am perfectly willing to take up the fight but I have to respect my fathers wishes, he has after all taken most of the work over the years.
(I've just grown-up with it). Also I've been told that I'm on a difficult wicket as regards a court order as the authorities will argue that they have tried everything to put a care plan together. Admittedly they do put adverts in the paper from time to time.... (So vaguely worded and poorly paid positions that few applicants apply. They then sit on the applications for a couple of months, eventually holding interviews to the few that are left. Offering posts a couple of weeks later.... Only those desperate for work are therefore finally employed).
Cynical though it is they will argue that they have fulfilled their legal obligations.
Is what is happening inevitable Yes it it enevitable one day and if one of my parents had become ill I would have accepted what is happening. however my parents are still well and healthy (touch wood), this is just a cop out by them. I have offered to help to care for John in the short term so that parents and john can evaluate this care home but so far I've had no response. (I think the deed is already a done deal)..... We've no problem with the authorities finding possible homes as we recognise the enevitability of age it is just this ultimatum way of doing things with no time to think that is so cruel.... We haven't spoken to anyone who is actually responsible for making these descisions, they just send messengers such as senior district nurses.
Cheers for listening to my ramblings.... I'll continue to do some homework on this.
Paul.
"Yoda Of Borg" subsp...@nospamblueyonder.co.uk
A very good point pete.
I think that this predicament has two separate issues, which although entwined should be dealt with seperatly Issue 1, John and how best to meet his need Now and in the future Issue 2, The acts or omissions of the local primary care team Issue 1: what will happen to John if his parents are unable to cope, and how long will it be before they each this stage.
I appreciate that there are some really fit 73 year old around,and with the greatest respect time is not on there side.
Paul are you and your partner able to care for john Full time?
To be honest if I was 'John' although I would like to stay with my family in comfortable surroundings, I would have to put my hands up and say that a care home may well just be the best place, Not only for John but his Parents as well (this is purely my opinion and as much as I would like any family to stay together, I feel that maybe its time for a change) I would also vet the care home carefully to make sure it met all of Johns physical and mental needs.
Issue 2: As tone pointed out, a solicitor is needed and I feel that Paul should undertake this aspect and not really involve the parents accept where needed for any authorisation etc., as pete pointed out legal proceeding can easily drain a person and affect their health dramatically.
not an expert or had much experience in this area so my post is opinions rather than fact. someone else here may be able to offer more help Yoda out
TuftySue s...@tuftysue.co.uk
Hi Paul First of all I am really sorry you and your family are going thru this, I think it's disgusting the way you are being treated.
I would like to help if I can. My name's Sue Venables and I have been living at home on a ventilator 24/7 for almost 20 years. I have been employing my own carers/personal ***istants for the last 15 years, their wages are funded by the Independent Living Fund and Direct Payments. I think I am in the same kind of situation as your brother - I live in my parents house and they still care for me if/when my PA's can't work. There is no way on earth I would let anybody make me go to a care home and I don't think they can force your brother to either, that would be abduction!
Please feel free to mail me privately, I would like to do as much as I can to help you. I feel very strongly about ventilated people living as full a life as everybody else!
Sue Can I Buy It?
Quality Goods At Bargain Prices!!!
Buy your beloved that special something for Feb 14th http://www.canibuyit.com
Don Moody d...@hyperpeople.demon.co.uk
Snipped the rest of the sad story because it is this bit, which if true, cuts to the chase.
The PCT is like all other branches of the civil service under a duty to minimise costs to public funds. Your statement is that their proposed action will increase costs to public funds.
That is a point of questioning by your MP in the House. He should do so forthwith, and no move should take place until an answer is got.
Your MP also has a lever insofar as 'care in the community' is Government policy. Civil servants are supposed to execute Government policy. They are not paid to decide policy or to contravene policy.
The National Audit Office also has relevant powers, including power to personally surcharge the accounting officer ultimately responsible for executive decisions. In your place, I'd ask for the name and address of the accounting officer concerned. (Note NOT the accountant, which is the bod who keeps the books. An accounting officer is a specific responsibility for all operations carried out under his chunk of budget.
He has the final say, precisely because it is his pocket that can get hit.) I'd feed that name and address to your MP.
You have to realise that these are stalling manoeuvres. Sooner or later your parents will die or become incapable. Sooner or later John will have to go into residential care unless he dies first. It is a judgement call as to whether you are all better off 'as is' in the family unit until it becomes impossible; or whether it is better to bite the bullet while your parents and you are strong enough to deal with the life changes which will result from John going into residential care now.
Social services may genuinely feel that the second is the better option, and they may be right in many cases. The question is really whether they have the right to so decide while the family is still capable of deciding for itself.
Don
--
Dr D P Moody, Ashwood, Exeter Cross, Liverton, Newton Abbot, Devon, England TQ12 6EY Tel: +44(0) 1626 821725 Fax: +44(0) 1626 824912
ghost_in_themach ...@hotmail.com (BlackShadow)
On Wed, 18 Feb 2004 17:39:16 +0000, Tone the wannabe biker who thinks that you don't ride bikes, you drive them, wrote: On what grounds Tone? This is a legitimate care agency, acting within the law. How do you propose to restrain it? What are you going to tell the magistrate?
Do you know what a restraining order is, what grounds are required?
No? I didn't think so.
You really don't apply much thought before spouting off, do you Tone?
Quadriplegics entering their forties are coming into a time when their care requirements can escalate dramatically and rapidly; respiratory problems, heart problems, there are many areas where an aging quadriplegic might expect difficulty.
So you see, there may be very good reasons why they want him in a better equipped facility with better trained nursing staff. Leaving him where he is may the worst possible thing for him, and if something did happen, and his loving parents were unable to provide the necessary treatment quickly enough, and he p***ed away, in a situation where better care and equipment might have prevailed, how would they feel later?
Hey Tone, go take a *drive* on a pretend Harley, it might make you feel better.
BlackShadow
ghost_in_themach ...@hotmail.com (BlackShadow)
Hell Smicks, you are an old bugger!
I didn't realise that. Perhaps I should consider treating you with deference? I just considered it and decided not to. ok?
BlackShadow
Paul Waites p...@york.ac.uk
I would but of course I couldn't expect Lynn to, neither would my parents let me.
I agree totally. We have thought and are planning for the future... The thing is that the health authority are deciding all this for us... A fortnights notice to go to a care home that we haven't any information about is hardly the way to think of a long term solution.
I have offered to help care on a short term basis while they get things sorted out. This of course falls on deaf ears at the health service because they don't want to hear this.... Their aim is to get John off their hands.
I am going to start this... It may be too late and I'll have to tread very carefully, I don't want to make things worse for my parents.
Cheers, Paul.
pete peterturt...@hotmail.com
Sorry Paul but if you and your wife cannot look after John 24/7 then you are lumbering your parents with your comp***ion. Tufty Sue has offered to help you out and yes you can stop John being taken away but you are now risking your own marriage as well as your parents health.
You best bet now is to follow Tufty Sue who has similar experienced or just play for time and accept the inevitable fact that John is going into a home of some kind and that is when you problems start believe me. Your best bet now is to fight to keep him out of the private homes that are cashing in at the moment and try to stay within a health service place or a local council place. Your biggest battle is going to be keeping John in a decent place and not letting him be transferred out of public care believe me. I am very sorry.
smicker
Serena Blanchflower nos...@blanchflower.me.uk
May I suggest one thing which might help you decide whether / how much you want to fight. I think it would be worth visiting the proposed care home as soon as possible and doing some urgent research into it.
If the home seems like the sort of place you would have chosen in a few years time, you may decide to accept the place, even though the situation has been handled so badly. If on the other hand you feel it is completely the wrong home for Paul, it may be more worth the stress of fighting for a different solution.
--
Cheers, Serena Mobility is the enemy of beauty... (Fascinating Aida)
pete peterturt...@hotmail.com
On Wed, 18 Feb 2004 18:08:00 +0000, Don Moody I do wish you would set your clock Don. I nearly missed this good post of yours and had indeed already replied to paul before I saw your much better reply;-) smicker
"Yoda Of Borg" subsp...@nospamblueyonder.co.uk
I think the fact that john's future is taken out of your familys hands without proper consultation is disgusting and do feel for you, ad unfortunatly the legal answer may be the only one.
I think that the more you can keep any legal dealings away from them the better.
Yoda Out
pete peterturt...@hotmail.com
On Thu, 19 Feb 2004 13:13:33 +0000, Serena Blanchflower I would, from first hand experience, make sure that John stayed within health service or council care. Private homes that may seem perfect one day are going out of business so quickly that their patients have to be shuttled to the nearest next one all the time. Some private care homes are run by Asians using Asians girls because they can get them to work for next to nothing as the girls only interest is getting to England and certainly not nursing IME.
smicker
Paul Waites p...@york.ac.uk
Hi all, (Excuse me using this newsgroup as a sounding board) The latest update is my father contacted the social services team leader for health and disabilites. He gave the usual flannal to my father about apologising that perhaps the communications could have been handled better??¦. (They always say that).
They are now using the tac that it is ???restbite??? care (Apologies for the spelling) until a care package can be re-established. I guess that this is to cover them legally. He wouldn??™t be pushed on how long this care will be or what would happen if John flatty refused to go. (Though he won??™t go so far as to admit it, this is not at the discussion stage, I dare bet all the paperwork is already done and an admission date sorted).
I always thought that restbite care had to be initiated by my parents or John to give them abreak??¦ I didn??™t realise that the health service could have a break from John!
The ???representative??? of the pct, (just one of the more lowly puppets not one of the ones who have actually made the decisions), wants to meet John tomorrow morning to explain things to him and get his agreement. At present my father is trying to stall this as we believe he does need an independant ???advocate??? present. Sadly all his friends seem to be busy (or in equally bad health state) as it is half term and I don??™t think that we can be independent enough.
I??™m off to the citizens advice beureux now, the only solicitor I know who could advise is not available and so I need to find others??¦.
Soap operas couldn??™t dream-up a storyline like this??¦ I think the thing that will scare John the most is the last time he had to go into some form of care it was five years ago when they established the care-package in the first place. He went to Southport hospital for a months evaluation and was still there a year later!
When he returned he was a different person (No disrespect to the nursing staff there but John was not ill at the time so why was he in a hospital)??¦ A whole year of little genuine stimulation had given him the ability to stare at a blank wall for three hours or more! It took us months to get him back to his old active self.
Serena Blanchflower nos...@blanchflower.me.uk
On Thu, 19 Feb 2004 13:13:33 +0000, Serena Blanchflower My apologies, I've just noticed that I got you and your brother mixed up :( Sorry about that.
--
Cheers, Serena Mobility is the enemy of beauty... (Fascinating Aida)
Don Moody d...@hyperpeople.demon.co.uk
The other possibility is that News does take a finite time to propagate from one server to another. You may 'see' the time your server gets it from Demon rather than the time I send it to Demon.
Thanks for saying so, but let's not lose the focus. It is right and proper that there are people in social work and medicine who can take decisions for us when we cannot take them for ourselves. What I believe to be improper and wrong is when such people - even with the best intentions - make decisions which the client or patient (including their family) is capable of making for themselves. If individuals are capable of making their own decisions, then they should be informed decisions.
In the case of John, his family seem compos mentis and capable of decision-making. What has not happened is Social Services giving them the information with which to make their decision. This should include the argument as to why SS/PCT think John should go into residential care 'now', why they think it is better to spend more public money on residential care than on care at home, and showing the family what the actual proposed residential care is like. It should also include what provision, if any, SS/PCT is going to make for John's family to make the long return journeys required for visiting John at regular intervals.
Given all that, John and his family could come to a sensible decision on whether his move into residential care should be 'now', 'soon', 'not in the foreseeable future', or 'when some other event occurs'.
What I suggested in the previous posting were tactics to put a 'hold' on SS/PCT for long enough to force them to provide the information for the family. I wouldn't personally go the way of using lawyers simply because legal speed is so slow that the move will be all over before a lawyer writes the first letter. It is as fast as one phone call or personal visit to make the Accounting Officer aware that there is a problem which will go all the way if (s)he doesn't simply pick up the phone to the erk concerned and say 'hold it, while I look into it.' If there is a good case for moving John, it'll only take minutes to explain it. If there is not a good case, if it is a matter of some erk going over the top in pursuit of 'targets', it'll be all fudge and delay until the problem simply goes away. It isn't in the nature of civil service departments to admit they got something wrong and to apologise, which also only takes a few minutes.
Don
--
Dr D P Moody, Ashwood, Exeter Cross, Liverton, Newton Abbot, Devon, England TQ12 6EY Tel: +44(0) 1626 821725 Fax: +44(0) 1626 824912
pete peterturt...@hotmail.com
On Thu, 19 Feb 2004 15:19:28 +0000, Don Moody Your posts are appearing on my newsfeeds, yes I have checked both, way after other posts have been read such as this post again. All I can think of if your clock is correct is that you are working offline and going online to post when you have finished a batch of posts. I will take care to check back in future as this post is several hours after the last one I marked as read.
Yes agreed.
Again agreed.
I would say no to the 'phone call idea as they are always deniable. I would agree with the personal visit though and also with not waiting for a lawyer to act if things became imminent but at the moment they do not appear to be so for another 14 days as yet.
Yes that is also why stalling tactics should be used until John and his family have worked out their next move. It could just be that a bed is becoming empty and the SS are casting around to see if they can fill it quickly and so they are looking for the people who they think may give them the least resistance.
smicker
Pat Winstanley boredofspam2...@yahoo.co.uk
You don't appear to have learned anything from your errors!
Peter Parry pe...@wpp.ltd.uk
The number of council owned care homes is negligible now and those that do exist are being closed at a far higher rate than private ones.
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Peter Parry. http://www.wpp.ltd.uk/
pete peterturt...@hotmail.com
Really. That is a blow but not unexpected considering that the private ones are run on a shoestring and are used for disposing of old people IMO. It is now very dangerous to be old and alone. My wife and I kept a good grip on how my neighbour was for years but when the time came that he could no longer be looked after in his flat then Age Concern of all people had him put into a stinking home were he contracted MRSA and died within weeks. I made many complaints to various bodies including Age Concern to no avail. I even received a Health Authority report on the home 2 months after he died. Dont get old.
smicker
ghost_in_themach ...@hotmail.com (BlackShadow)
Yep, I thought so. You are wrong again, they are right where I left them.
Tone, why are you thinking about my balls? It is a little bit worrying. Do you often think about other guys balls? Are you envious?
Do you wish you had some of your own? How about a prosthesis, have you considered that?
Who on earth would I be afraid of Tone? The only people I don't want to have my real address are spammers, but I am not afraid of them, just pissed off by them. You aren't one of those nasty spammers are you Tone?
I will always have you Tone, there will always be you. It doesn't matter whether you read the posts or not, especially as it doesn't seem to do anything for the quality of your replies.
BlackShadow ps Tone, my address is real, but if anyone wants to write to me, they have to put the letters DNF on the subject line to avoid the kill filter.
"Rachael of Nex, the Wiccan Rat" n...@badrats.co.uk
Hey, rant away - it's what it's there for !
Ye gods, I can't say how disgusted I am at the way John and your family are being treated.
As Don Moody said so eloquently, what on earth are the pct doing making decisions on behalf of the family unit when all concerned are quite capable of making those decisions for themselves ? Two weeks notice to change your entire life from top to bottom is disgusting in anyone's book - even if you *had* been given the relevant information in order to have made this decision yourself, which you plainly haven't.
I am afraid I have no experience in similar matters which would enable me to give you any advice but I can vouch for the fact that as someone else suggested (I forget who, sorry) legal proceedings through solicitors do indeed move at a snail's pace. This I *do* have extensive experience with. Solicitors are as slow as can be - they take months to get a move on, and when they do, the situation has often changed in the meantime. However, this shouldn't put you off using one for this - at least even a quick letter from a solicitor saying "This is unacceptable and we are instructed to look into this matter further" would at least show them that you will not be steamrollered like this. As I understand it, John can just refuse to go and there's not alot they can do about it - they can't abduct him afterall !
Though as you say, they may find some other way to get back at you as a result.
This must be *extremely* distressing for all of you and I feel for you, I really do.
I think stalling them is your only option for now. Please keep us informed of how it's going. I'd dearly love to poke whoever is responsibile for this appalling treatment of John and your family in the eye with a sharp stick, fwiw.
Rachael
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