My husband has to have a pacemaker fitted. He is a C6 Tetraplegic and needs 24 hour care. We have been told that he will need convalecense care for approx 3 weeks after his op and that he will not be able to use his loft arm during this time. I will not be able to look after him at home and he will go into a nursing home for just a short while. The PCT are saying that we will have to self fund this. Surely this is a case of them being greedy. Has anyone any suggestions? He is saying he will not have the op because we cannot afford the £1500 it will cost us for care. Help!!

This just does not sound right to me. Even though there are Nursing homes these are in NO WAY a substitute for hospital care. They do not have the same equipment and staff ratio for starters and NO resident doctor or GP. Why can't they just let him stay in hospital after the op? I should contact the PALS organisation at the hospital and question WHY he should have to pay for his Nursing care ??

Anymore suggestions please ?? as this is a new one on me.

This is a new one on me too!!

I know there's something called 'intermediate care' - which I think may be what we used to call convalescence, or rehabilitation, or recuperation even, after an operation. I'll see what I can find and come back.

But, strikes me , that if your husband, geedeedee, is a tetraplegic then he is going to need more 'after care' than any nursing home can provide after his op.

I'll have a hunt around. But, my first thought would be talk to PALS at the hospital, as Bodecia suggested.

Back later.

VM

Can't find anything of help, really. Apart from the Age Concern link below.

http://www.ageconcern.org.uk/AgeConcern/Documents/FS37Hospital_discharge_arrangements.pdf

I cannot imagine that your husband would not qualify for fully-funded NHS care. And that question must be asked and answered before any social services provided care is even considered.

Have you got a good GP? If so, discuss this with your GP - and ask him/her to get involved. After all, it will be the GP you'll need to call on for any needs once your husband is back home again fulltime.

Or talk to PALS at the hospital.

Definitely sounds odd to me. Let us know how you get on.

VM

VM. They shouldn't be any charges anyway because this gentleman is going back to his home ? Agree with you - a standard nursing home is not a suitable place under these circumstances surely ?

Hi geedeedee, I am afraid if it was me I would say SORRY HE IS NOT LEAVING THE HOSPITAL, he has had a serious op. and given his condition, he needs extra expert care, apart from having a doc. 24/7 on hand. Go for the op and then stand your ground afterwards. After all it is only 3 weeks, it is hardly bed blocking. Anyway is it not true that if a hospital discharges you to a nursing home they have to assess you first, then they have to find a bed in a suitable nursing home, and then don't you get so many weeks (maybe 2 or 3) free.??? Why which time he should be fit enough to go home. I hope I am not out of turn here. Lyn

Yes Lyn. If you own your own property and you go into a nursing home they have to give you a " 12 week property disregard ". However this is a double edged sword because for this to happen you have to submit to a financial assessment by the social services.

This is what I meant by I had not come across this particular problem before. However you are right on the button about making the hospital keeping him for 3 weeks after the op. What's their problem with that ? If he did go into a nursing home it would probably take about the same time for this gentleman to " settle in ". And no doctor on hand in case of complications ?

I remember way back [ 1960's] when the NHS gave proper convalescense to discharged patients. My Dad went to a lovely place at the seaside and came back 100% recovered after a major op. And they say " things can only get better " !!

Welcome Geedeedee

I am with Lyn and Bodecia on this one.

Your
husband is having major surgery and added to this is already disabled.
After the operation he will require specific care that you cannot give
him at home. That care is as a direct result of the surgery - nursing
care that usually you get in Hospital. You shouldnt be charged IMO.
However I have found information that states about charging for this.

It
was always the case after surgery you remained in hospital for nursing
care and couldnt be discharged home until you were well
enough.Sometimes you had a District Nurse visiting to continue the
nursing care on a low level by daily visits.

My own personal
views are you should NOT pay. Stand firm and do not sign anything in
this regard or agree to anything regarding payment. Watch they dont
trick you into anything and I agree about consulting your GP on
this.Maybe your GP could write a letter or do a medical report just to
back up your ? Get this BEFORE any consent is given to the surgery?

I am no expert on this I am relatively new to it all so those are just my views and input.

regards Dee

The word case vanished from that posting sorry.

Hi again, geedeedee

I apologise for not realising that having a pacemaker fitted is considered to be a minor operation, requiring minor surgery. As Dee said, she thought it was major surgery, but I have no experience of it ... so I apologise for my own ignorance.

But, having been told today by friends that it is not major surgery, then the only advice I can offer you is that you ask as many questions as you can think of, bearing in mind that you have already said that you can't cope with your husband at home, after the pacemaker fitting. And that he is a C6 tetraplegic. That alone would need you and your husband to require extra-special care. If that still exists today in the NHS.

I know you said in your original post that you couldn't care for him at home, in the immediate convalescence period. So just insist that the hospital consultant understands that.

Again, I had no idea that pacemaker-fitting is considered to be a minor procedure.

VM

Gosh I didnt realise that it wasnt major surgery either. I apologise as I was relying upon a deceased member of the family who was born with a serious heart defect and had a pacemaker. He used to have to be treated and operated upon by a famous heart surgeon at Harefield Hospital.Clearly times have changed and the medical world has obviously moved on considerably since the 80s.However personally I cant help but think of it as major surgery even though it seems I am wrong.I still think given the other health problems that free care is the case here.

Sorry if I get things wrong but I can only givem my thoughts and opinions on things.

I also tend to forget what a crazy mixed up world we seem to live in these days too.

regards Dee

From Geedeedee
Have complained to everyone about the unfairness of the system. No one listens.My husband is quite willing to go into his usual nursing home for a while until he is able to use his left arm again, he knows that I will ot be able to manage him on my own but NHS is insisting we get the SS involved (SS in our house because that is what they remind us of!!!!) and then we know that we will have to pay - the system is rotten to the core. I am going to re-apply for continuing care and I will not rest until I get it - boy have they annoyed me this time???? Thanks to everyone who answered my query - if we all stick together - you never know we may change the system. Power to carers!!!

Great to hear that fighting spirit even though this gets us all down at times the spirit is still there.

Good luck! Go get 'em.

regards Dee

Hi all

Anyone from the Northallerton area fighting for continuing care. We were turned down in Jan 2009 and wish to appeal. We are not going to give up this fight.

Hi geedeedee you are fortunate when we try to appeal their decissions they pretend they cannot hear us and lose our letters then try to trick us into applying for a retrospective review

geedeedee, you mentioned your husband goes to a nursing home, does he have to pay for that or is it for respite.? Does he get paid respite.? I don't know the exact nature of your husbands problems, but don't give up on the CC . My husband has had parkinsons for 18 years this Feb. he will be 60 also in Feb. I fought and fought for NHSCC and got it in the end, it took well over a year, (and that is a short time compaired to some) but I only managed to keep going and get all the right sort of information from this forum. It will be tough, but keep in touch with this forum because all the great people on here will help you along the way. Meanwhile I hope you can sort out this problem. Take care Lyn

Lyn it is people like yourself who are such an inspiration to the rest of us,

regards Dee

geedeedee, I am tetraplegic and have been fighting for CHC for four years and on my second Independent Review Panel. I suggest you ask your husband's Spinal Injuries Unit if he could go there for rehab as that would be the perfect place; at no cost as it is part of the NHS.
I admire your determination to continue your fight for CHC, it is the only way, not to give in to these dictators. I wish him all the best for the op and recovery.
Regards
Peter (C5)

Thanks Peter
Our local Spinal injuries unit is almost always full and we would have difficulty getting in. Ste was in the local hospital after his accident in 1964 for 18months and was then transferred to Stoke Mandeville where he stayed for another 18 months to have operations on all the bed sores he got from our local hospital. I have managed to keep him out of hospital for 38 years because I know that he is wary of hospitals after his past experiences. I do all his nursing care at home but with the pacemaker being fitted he will not be able to use his left arm. You will understand that this will be even more of a handicap than the one he already has - C6 tetraplegic.
He is more than willing to use the nursing home where he has his respite care because they treat him like a person and not a number. I am determined to fight my corner re CHC. The trouble is that by the time we get it my Ste may have passed away. He is 65 now and has been in his wheelchair for 45 years and starting to get a trifle frail.

Geedeedee I am so sorry to read all about your situation and as if you havent got enough to contend with the system just loves to make things that more difficult instead of doing all it can to help.

You are a remarkable lady and have great strength of spirit to battle as you do and deal with all that life has thrown at you and your husband over the years.

I wish you the very best of luck with this and hope it is all sorted out for you without anymore stress and worry.

regards Dee

Geedeedee, has your husband got a DISABILITY DEVELOPMENT WORKER I can't quite remember, but I think this was done through our social worker ( one we had years ago that wasn't any good) but I am sure if you contact your local a. they would (may) be able to help. My husband was given 5 hours a week paid for by our Local A. This was so he could have a 'pal' to take him out, go play bridge etc. This was then set up with the Norfolk Coalition of Disabled People, I am sure you must have something similar in your area. This is what I wanted, I wanted someone to take my husband to the gym and help him get some movement in his limbs, and some upper body strength. I used to do it, but could not carry on. The Coalition put an advert in the local paper, and a young man from Norwich Uni. answered. I have a physiotherapy student, (now in his third year) come to take hubby twice a week to the gym, and if he is not very good sometimes, the student does movement with him at home. All this is paid for under the Direct Payment Scheme. Now because I do not want to handle any of the money, the Coalition do it all for me, all I have to do is email his time sheet to them every 4 weeks. It has worked so well, and the student is just wonderful, only 21 and the most helpful and kind lad you could come across. He so loves his work he would like to do Neuro physio. Don't know what we are going to do when he finishes in the summer. I know your hubby's needs are far greater, but every bit of movement (in his upper body) may help, that is when he is able to use his arm again. But even if he didn't have body movement, he may be able to have a 'pal' take him out, go to a football match, go to the pictures, etc. Just to give you a couple of hours break. Going to look up C6 tetraplegic, as I am not really very sure how much movement he has. I have a thought Pam Coughlan is tetraplegic, nor sure of the C6. Take care keep up the fight. Ohh I know it is easy to say (been there) but to keep fighting is so hard. Lyn

Hi GeeDeedee

I found this from Darlington LA (is you husband over 50?)

http://www.darlington.gov.uk/dar_public/documents/Social%20Services/Intermediate%20Care.pdf

Bottom of page 2 quote

Will I have to pay?
The service is free, up to a maximum of six weeks, as it is part of your health care treatment.

Hi everyone
Husband has had his pacemaker fitted and is reasonably well. He is in a great deal of pain and finds it difficult to move because his left arm has to be immobile. Bad news is that we will have to pay for his convalescence care. Our care home could only take him for 12 days which is better than nothing but health service say it is our responsibility to pay for his care. Our social worker says it will have to come out of my respite care money - some £666 - (we have direct payments) but this money was supposed to be for a holiday that we had arranged with our daughter who was going to help me take care of her dad for a week. That will now have to be cancelled. Why it is classed as respite when it is evidently convalescant care is anybody's guess. I am hopping mad. No one has even advised me how to look after him when he comes out of care - I have been left to 'God and providence'. Feeling a little down in the dumps and that is really not like me.

Geedeedee

Hi GDD I am so glad your husband has had the op and is now recovering.
If it is any consolation I am hopping mad too reading your update.It
just gets worse!!!!!!!!

Please take care and try not to get too down about this as hard as it is but what a shocking example this is.

I am sorry I know I am not au fait with things and I am learning slowly but I just cannot for the life of me fathom this out.I cant get my head around it I must be missing something or things are worse than I thought.

Take care of yourself and my very best wishes to your husband for his recovery.

regards Dee

Thanks Dee
I have now recovered from my 'down period' and health and Social Services had better watch out they have now got my "DANDER" up good and proper. My daughter is writing to the newspapers and to our Prime Minister (not that this will make any difference) but she can but try.
Watch out everyone I am one annoyed carer!!!!

Hi Geedeedee,

Good to hear that the op went well and that your husband is reasonably well.

It makes me angry too, on your behalf, because respite care is meant to be just that - respite, mainly respite for the carer. What if you had already spent that respite care money? SW would have had to come up with another ruse, but they're awfully experienced at that, as we all know!!

Have you phoned Counsel & Care? They are pretty good -

http://www.counselandcare.org.uk/

VM

Geedeedee, so glad your husband has now had the op. That is one big problem out of the way. Now for the rest!!!!!! I am glad your daughter is writing, but I agree I sent an email to the PM office the other day, and haven't had an answer. I agree with VM, respite is for you to have a break, go away, have a rest etc., not to pay for, what I would call, medical care after an operation. I cannot understand it, but I think they (all different PCT's) make up the rules as they go along. Keep at it. LYN

hi everyone

Great news, husband now out of care but no one has offered us any care of any sort and we are "flying by the seat of our pants". My back is holding up at the moment but arthritis in shoulders, neck, wrist and fingers is causing me pain. Good news about paying for the care we had. We did not get any help from anyone but on Friday night the homes central heating boiler blew up and there was no heating so I brought my husband home at 7.30 pm. I received a phone call on Sat morning to say the owners of the home are waiving the entire 12 days care fees as an apology for what happened. Result in one way but NHS has wriggled out of their responsibilities.

Great news indeed!! And that's what counts ... husband and you are now safely home again together.

Hope that hubby now goes from strength to even greater strength, now that he's back in your care.
Wishing you both a good sleep tonight, and a good day tomorrow.

Knock on doors tomorrow, or even ring their phone bells! But main thing is to have restful night.

Take care, meanwhile, and ask for support tomorrow.



VM

Geedeedee yes its good news your hubby is home with you and the costs thing is good news too but you have been put through a terrible ordeal with all this.

Disgusts me it really does.

regards Dee

Great news Geedeedee, it takes a boiler to blow for them to feel just a bit guilty in asking for money. Do you have an OT that looks after you, if so I would phone them first thing and ask for an IMMEDIATE visit. Ask them to put in place any aids that would help you NOW, not next week. Say you have a bad back and you find it impossible at the moment to help your husband, as he is unable to help himself. THEY ARE THERE TO MAKE SURE YOU DON'T HURT YOURSELF AS WELL. Health and Safety You may already have the equipment in place, but if your husband is unable to help himself at the moment you need to know what you can do to safely move and handle him. If you don't get any joy, get a call out from your GP, and see if they will help. You must not struggle for the next 4 weeks, (I think you said he was not allowed to use his arm for 6 weeks), by that time you could damage your back and that may take much longer than 4 weeks to put right. Make the calls and get them all running you deserve a bit more help than you are getting. You could quote dear Gordon Brown, he seems to think he is going to give us all 5 star one on one treatment in the future. flying Lyn

Hi Lyn
It wasn't the SS or NHS that waived the charges - it was the care home owners. Malaysian people who obviously care more than SS or NHS.
We have all the aids we need for when Ste is in "normal" health. Our OT is about as good as a chocolate fireguard as is the social worker. We are carers and Health and Safety do not matter. I was told by someone in social services that it was my choice to look after my husband!! What was I supposed to do - leave him on some street corner in the hope that someone would pick him up and look after him? Let's face it - we carers are already giving our loved ones one to one care, a bit more appreciation wouldn't come amiss as would more pay. I will reach 60 in a couple of weeks and I will then cease caring and become an OAP. It still doesn't matter, I will still not get any more care provided. My back is already suffering as my sciatica has come back as has the arthritis. Never mind - my dad used to say "lifes a bitch and then you die" and boy, was he right.
Our grand children are visiting next week so my daughter will be on hand to help. Thank goodness.

Geedeedee, do you have a GP who is made of more than chocolate? If so, get GP to take on board the fact that there will be two people needing care/help/support soon, if they don't get you the services of an OT and a SW who are prepared to do what they are paid to do!

The SS have a legal duty to assess needs, and to provide contact with the required services, regardless of who's paying, but they often forget that legal part of their job. Same applies to the OT.

You need help and you need it NOW. And the OT needs a kick up the a.se, so that you are supplied with the aids you need for when your husband is not in 'normal' health, like after an op!

VM

GDD Have you ever heard of Direct Payments ? This is when the Local Authority will give the person money to " employ " carers who can be relatives [ as long as they don't live with the person ] or trusted friends and neighbours. I don't think it's means tested ? And the social worker " should " advise you of this but rarely do.

Just found a link here :-

http://www.direct.gov.uk/en/DisabledPeople/financialsupport/DG_10016128

Hi Everyone
Update. My husband has had his pacemeker checked and it is doing it's job (thank goodness). We managed for 5 weeks without any care so I congratulate myself for being so strong willed. Got a bad shoulder and back-but SOCIAL SERVICES AND THE HEALTH SERVISE HAVE YET AGAIN PROVED THAT WE CAN COPE- even when we injure ourselves. It hasn't cost them anything and they are all happy bunnies!!!!
Still awaiting continuing care assessment 8 weeks down the line but they are in for a shock, now that I have ceased worrying about my husband and his heart problems I have now got the energy to fight. So everyone watch out GLYN IS BACK TO NORMAL AND FIGHTING FIT!!!!! hUSBAND Husband has developed high blood pressure and sometimes it is very dangerously high 180/120. Another case for CHC as his health is deteriorating will let you know how we get on.

geedeedee wrote:Hi Everyone
Update. My husband has had his pacemeker checked and it is doing it's job (thank goodness). We managed for 5 weeks without any care so I congratulate myself for being so strong willed. Got a bad shoulder and back-but SOCIAL SERVICES AND THE HEALTH SERVISE HAVE YET AGAIN PROVED THAT WE CAN COPE- even when we injure ourselves. It hasn't cost them anything and they are all happy bunnies!!!!
Still awaiting continuing care assessment 8 weeks down the line but they are in for a shock, now that I have ceased worrying about my husband and his heart problems I have now got the energy to fight. So everyone watch out GLYN IS BACK TO NORMAL AND FIGHTING FIT!!!!! hUSBAND Husband has developed high blood pressure and sometimes it is very dangerously high 180/120. Another case for CHC as his health is deteriorating will let you know how we get on.

@ geedeedee


well done Now go kick ass dont let them off the hook, we are all rooting for ya m8





mick

Well done, GDD and Husband! Sorry about the shoulder and back - tell the PCT they'll have another patient soon if they don't buck up their ideas.

As Mick said, now go kick ass!! We'll all be here if you need us.


Mick: nice to see you back on form! Hope all is "weller than well"!!

VM

Victoria Meldrew wrote:Well done, GDD and Husband! Sorry about the shoulder and back - tell the PCT they'll have another patient soon if they don't buck up their ideas.

As Mick said, now go kick ass!! We'll all be here if you need us.


Mick: nice to see you back on form! Hope all is "weller than well"!!

VM

V/M
Ok at the mo
If i'm still posting after 25th March, ill continue to kick as many asses as i can , if not at least i had a good one and met many good friends along the way you being one of them, that is something no P.C.T or S/S can Take away

Mick