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iwontgivein
1st December 2012, 08:31
I have been looked after so well by my local services.

They have given me..

Brand new fully adapted purpose built disabled friendly home
New power chair
New raiser/recliner.
Fully automatic front door.
Clos o mat toilet
Environmental controls.
Endless amount of disabled accessories.
Computer equipment.
Computer reprogramming (grid2)

Thank you so much Southwark :)

G60dubber
1st December 2012, 09:20
lucky you, I got grid 2 from nhs...... bugger all paid for by local council. Then again I'm a mug who worked all my life ;-)

roy
1st December 2012, 12:31
hi iwontgivein,

Just goes to show how the different councils work, Im pleased that these improvements to your life have been made and yes Southark Council should be congratulated, thing is we dont all live there and for some on here is a hard pill to chew.Just seems lifes a lottery and good to see they have made a difference in your life.

all the very best.

Roy.

pete
1st December 2012, 14:53
Hi,iwontgivein

Well good for you ,its nice to see it can be obtained ,just reading your home page ,you say you have 50% restricted movement in one, hand to date ,maybe this information is out of date , but you seemed to have hit the jackpot in getting so much so soon, perhaps you might like to share with others how you managed it .

I am sure there are quite a few who, would like even a small part of what you managed to acrue for what seems early stages MND, so i wish you good luck,just to let you know ,We qualify for nothing ?, I was the only breadwinner had worked since leaving school at fifteen ,but until MND came along never been out of work,Now it seems i wont see retirement age ,and the advice we got was spend all the savings we had, not a large amount by any means,, and then claim benefits, I pointed out , what was my wife going to live on after i kicked the bucket ,he shrugged his shoulders , I said never claimed before so wont be now ,As Roy said in his post it is a bitter pill and an unjust system and unfair ,but who said life's fair

Graham
1st December 2012, 16:51
Well done Southwark Council. MNDA should award merit status to the Council to make the point that good care for MND matters.

mellonius
1st December 2012, 18:22
This thread made me add up what I've had since diagnosed in March. I feel - almost - guilty. Almost - but not quite!

New rear door and ramp
Profile bed and bed levers
Chair heighteners
Rising Chair [mnda]
Car Adaptation [mnda]
2 Rollators
3 Walking sticks
Transit wheelchair
Electric wheelchair
Stair Lift
Internal and External Grab Rails
Bath Rising Chair
Food Trolley.
Grab stick
Dressing stick
Foot lever
2 mowbray toilet seats
Etc.
And other items are on order, eg communication aid


Of course, they are only loaned and some items have gone back already as my needs change. Not quite up to Southwark but close!!

In an ideal world, there should be no disparity between health and local authorities who in some areas are beginning to share resources in MND networks.
I also think patients and carers can help by being proactive in identifying needs and being good humoured and friendly with health professionals: they are like the rest of us , and timely 'thank you's,etc can go a long way.

Can't succeed every time tho - application for a grant for a wet room refused.

Mel

roy
1st December 2012, 18:38
Hi Mel,
think you hit the nail on the head, where you stated on loan to be returned for future use.I think with equipment in mind should never be means tested afterall with changing needs for both short termers and long.Fact is at the moment only palative care available a few trials for stem trials some for drugs but as far as I am concerned still whistling in the wind, so all aids should be made available sooner rather than later, which to Mels credit presented to the welsh assembley last week.

Chrissy
1st December 2012, 18:44
Hi All

Made me think about what we have to aid Bob's condition and in such a short time too, but as with Mel's situation everything we have is on loan. Still awaiting news about the adaptation but don't think it will be fully funded.
Roy you are completely right, why should this be means tested? so that Pete and people like him who have saved and prepared for retirement are penalised, and should be across the board rather than determined by area.

Chrissy

magic
1st December 2012, 20:35
Very interesting thread. Hope we don't become judgemental about each other but about the postcode lottery.for the record: Peter has had:
Cutlery,but we bought the seconds set
Rails to bed, so useful
Wheelchair Peter will not use
Resting hand splints
Perching stool, will not use
Adjustable table, very useful.
Highly subsidised respite care,we only pay 10percent


We have bought
Key handles
Cutlery
Easy to dress clothes
We will be paying 20-30k after Xmas for adaptations

It is a bit of a lottery but charities should be fighting to take financial pressures away from us.

Magic

Robert
2nd December 2012, 17:25
Hi Magic,how stylish and easy are those clothes as Pat now has a struggle to put my shirt on,but getting it back off is becoming a nightmare as at the end of the day were both tired and I'm not so pliable so it 's become painful Regs Bob

roy
2nd December 2012, 19:30
Hi Bob,

we have a simular problem with me, because I have broken back and both shoulders frozen we bought from sport direct some extra large size teashirts sweatshirts, they look baggy, but I feel comfortable, although still a challenge find less painful dressing undressing.I also find baggy zip up fleeses good.youve proberbly tried these but they help me for the time being.

best wishes.

Roy.

magic
2nd December 2012, 20:34
Bob, I bought over large vests to aid dressing. M&S do a decent line in pull on trousers. Larger polo shirts and gilets are not too difficult. he tends to reserve the traditional clothes for special occasions and I have to help then with all the fastenings. He will let me put socks on if I happen to be passing but, even having bought the larger size with gentle tops, they are very hard for him to manage.
have tried to ease him into Velcro fastening shoes but we are coping with elastic laces as he can be a very stubborn man. he looks brilliant in everything!
Magic

iwontgivein
4th December 2012, 14:50
lucky you, I got grid 2 from nhs...... bugger all paid for by local council. Then again I'm a mug who worked all my life ;-)

Im 48, left school at 16 years old, started full time work for W H Smiths 3 days after leaving school. and i have worked non stop in full time work until 3 yrs ago because my MND has started with my hands and arms,
if it had started with my legs, i would continue working in a job using my power chair.

iwontgivein
4th December 2012, 14:54
Hi,iwontgivein

Well good for you ,its nice to see it can be obtained ,just reading your home page ,you say you have 50% restricted movement in one, hand to date ,maybe this information is out of date , but you seemed to have hit the jackpot in getting so much so soon, perhaps you might like to share with others how you managed it .

I am sure there are quite a few who, would like even a small part of what you managed to acrue for what seems early stages MND, so i wish you good luck,just to let you know ,We qualify for nothing ?, I was the only breadwinner had worked since leaving school at fifteen ,but until MND came along never been out of work,Now it seems i wont see retirement age ,and the advice we got was spend all the savings we had, not a large amount by any means,, and then claim benefits, I pointed out , what was my wife going to live on after i kicked the bucket ,he shrugged his shoulders , I said never claimed before so wont be now ,As Roy said in his post it is a bitter pill and an unjust system and unfair ,but who said life's fair

My profile is very out of date.
left arm at 10% strength, right arm at 65% strength,
All the equipment is ON LOAN, paid for by the local council
Answer to your question to how etc..FIGHT AND FIGHT HARD FOR IT :)

G60dubber
4th December 2012, 15:24
Im 48, left school at 16 years old, started full time work for W H Smiths 3 days after leaving school. and i have worked non stop in full time work until 3 yrs ago because my MND has started with my hands and arms,
if it had started with my legs, i would continue working in a job using my power chair.

don't misinterpret my comment, sry if you did. I do not begrudge you getting help, it's refreshing to see a council properly supporting an MND patient. What p*sses me off is I've worked all my life til I retired at 38 with MND n because of means testing I get no help from council, relied on MNDA for closomat n lift, n (usually) substandard assistance from NHS/Wheelchair services.

It doesn't matter how hard you push or how loud you shout, it makes no difference as the rules work against you. Having paid a lot into a system from which I get no return bites deeply.

Rory
5th December 2012, 11:05
Hi Magic,how stylish and easy are those clothes as Pat now has a struggle to put my shirt on,but getting it back off is becoming a nightmare as at the end of the day were both tired and I'm not so pliable so it 's become painful Regs Bob

Bob et al
I use golf fleeces that have a smooth lining inside. They are warm and easier to slip over any other top you are wearing. I then look athletic but inside the fleece is a wreck !
Regards

Rory

logtallali
5th December 2012, 17:32
Hi All,

I'm in complete agreement with Mel and Chrissy. This situation just should not exist. We have just returned from out local MNDA branch drop in session. Even for those living in North Notts. it seems that it may be down to who you ask and how you put your case. Don't we have enough to handle without the added stress of questions like will I have to buy my own powered wheelchair and put my own ramps in?! I don't think anyone actually wants to need ramps/wheelchairs etc....

LTAli

Terry
5th December 2012, 20:23
Hi Ali;
Welcome to our forum. Please see if you have a wheelchair service in your county and the council might do small works even if you have savings etc. You may well get a powered chair for free. My council did offer upto a 1000 for ramps but we did not want what they wanted to do. We are using a temporary ramp that has been fixed and it works very well.
Good luck, Love Terry

Smudge
5th December 2012, 22:32
John has been having problems getting off the sofa unaided recently, so we went shopping for a chair. Somehow we ended up at a rather pricey Department Store in Bournemouth & he tried a rise and recline chair - more to annoy me than anything else because I commented on the awful fabric. It turns out this this chair is exactly what he needs, so I checked the price tag, saw it was over 1500, made our excuses and left so I could come home & research cheaper options.
The next day he had a physio appointment and I made an off the cuff comment that we'd been chair hunting, within an hour of getting home we'd had a phone call for the OT lady at the MacMillan unit telling us not to buy one as we could get one through MNDA. He was measured for it yesterday & I mentioned a table to go across it would be useful. Today there was a knock on the door which was the table.

We don't know what we don't know, and the one thing I am learning is that it's always worth asking. Even if that goes against the grain for some of us.

iwontgivein
16th December 2012, 08:53
Yes Smudge, Always ask as there are always options

Never worry about telling anyone good news on equipment and help you receive

I find that even in the MND community, there is a lot of jealousy regarding who gets what and how but at the end of the day...we are all in the same boat of living with a incurable cruel disease

pete
16th December 2012, 09:31
Morning,

Having a bad day , It seems from your post that you think that folk on here are jealous in some way towards you,

I find that very sad considering as you say we are all in the same boat,Sadly we are not , it seems you managed to get all you need, be grateful ,its a waste of your life spending time thinking the worst of others, that have the right to say, just as you felt it the need to brag about your good fortune ,others have less to brag about. as the system does not work so well elsewhere
For me I reserve my jealousy for a for a life without MND

pete

G60dubber
16th December 2012, 11:00
It seems from your post that you think that folk on here are jealous in some way towards you, For me I reserve my jealousy for a for a life without MND

nicely said Pete.
I don't wish to perpetuate any ill feeling, however if 'iwontgivein' actually read the content properly then he would have realised there's no need for a cheap dig... it's not about who can pee highest up the wall.

iwontgivein
16th December 2012, 15:37
I dont get the support from he MNDA here as they dont have enough funds to provide me with the said equipment, so i "allow" the system to work on my behalf.

It was not meant as a "dig" as MND is bad enough without making others feel put out or jealous, but looking through other post on other threads, it seams that when someone gets something for free, some just get real p**sed off about it !!

I will no longer post anything that i get for free on this forum, in case it upsets others that the system does not work for them...:)

June
16th December 2012, 17:45
Hi,
I too feel lucky. Fylde Council have just paid for my new bathroom. I now have a walk-in-shower and all remnants of my old-fashioned bathroom have gone. I've nearly got to the stage of dragging people off the street to admire it. It just lets me retain my dignity for a little longer, now not having to rely on anyone helping me into and out of the old bath.
I don't care if this is all I get, it's made me so happy!
There is a lot of help for MND victims in Fylde, from the Association local and national, from Social Services and Community Health. I just have to get in touch with my MND nurse and whatever I need is there. When I see her she usually has another aid to suggest.
The post code lottery is infuriating and I wish I knew of a way to equalise it, not only for us but for stroke victims for instance.
I wish you well,
Jan

roy
16th December 2012, 21:29
Hi June,

Thanks for sharing something that has made a difference to you, all involved to make this happen deserve a big well done for doing a great job.maybe we should do as the government, councils and authorities do set up a league table, did request MNDA to find out if all councils are giving full support to our members.aware time is precious only too well.

Best wishes.

Roy.

Gloria
17th December 2012, 09:02
Hi Jan, we come under South Ribble council and have been referred for a through floor lift and level access shower as hubby can no longer use the stairlift which was given to us. Unfortunately there is a two year waiting list so will probably be too late for us, hubby is getting a hospital bed and a hoist this week we have has to change the lounge into a bedroom and I will sleep on the settee not ideal but have no choice - it is definitely depends on where you live and there is not much mileage between South Ribble and Fylde.

pete
17th December 2012, 09:57
Hi Jan,

Really chuffed you got your bathroom sorted , and it does make life a little easier , With ours its getting in to use it now ,the wifes always in there ?. As for Services , I doubt if they will ever been standardised , so much depends on what the local councils have for expenditure, as they are all different , and spend money in different ways , Anyway enjoy it its an early Christmas present for you.

regards
pete

Graham
17th December 2012, 13:44
This thread is really important as it highlights the vast variation in provision of national care. People pay national taxes and deserve national care standards.

pete
17th December 2012, 14:34
Hi Graham,

I do hope your getting better treatment and wish you compliments of the season ,

And couldn't agree more, but seeing as its Called National Health Service, it's far from being National, anything but ,it seems from the posts on here ,and you know yourself that Good care is really sparse, add MND into the mix and it's very clear that other than hospice care , NHS falls way behind what you could call anywhere near adequate , from my few visits into hospitals with general surgery , with what I would call indifference by most nurses and very lucky if you had one who showed any signs of being a nurse in the true sense. But on the other hand seen how some patients treated them , so not really surprised at how despite all the goodwill in the world, it is not getting better.

Taking local authorities ,well seems it goes from very good to almost non existence , so what do you see as the answer , Just hope these much vaunted changes are for the good ,but from seeing the politicians trying one up man ship at every turn don't hold much hope from them either .

Regards
Pete

Graham
17th December 2012, 16:27
Hi Pete,

Season's greeting to you and to all.

There is enough material in this thread to warrant a full Public Enquiry. Anyone with Government responsibilities must surely be taken aback with what is going on and act. Trouble is these leaders are weak.

You earlier mentioned CCTV. Yes it cuts both ways for patient on nurse as well as nurse on patient. It is matron's role to maintain control on wards with good nursing.

Anyway, tis season to add a bit of G to T. Enjoy

john
17th December 2012, 17:49
Hi Pete,
You mention that NHS standards vary apart from hospice care. Don't know what it is like with you but with us hospice care is all down to well run charity - not the nhs. Funding comes from charity shops , donations etc and that in itself seems a disgrace . Surely provision for terminally ill people is the least that society should do it shouldn't have to rely on charity. It should be a priority for us all not a hit and miss charitable activity.

john

pete
17th December 2012, 19:47
Evening John,

Yes pretty much the same in the Midlands , I agree its a real disgrace that when people have this disease to contend with ,along with other conditions , that are not that well known in the Hospital you end up in ,your at the mercy of agency staff and the odd Nurse who is run ragged because the others insist on chatting about what they did earlier or last night , and the last thing they want to do is be disturbed by some moaning old git , Yes I use the words I overheard on more than one visit, and now worst of all I am that old Person and unable to talk ,much like Graham stand no chance of raising help if i where to need it , so hospitals are a non starter for me , if and when the time comes for me i think i will hold out for the Hospice option,
We lost the mother in law to Dementia and have nothing but praise for the wonderful staff from the Local Hospice who saw she went out with some dignity, nothing was to much trouble for those people.even applied her makeup for her husband to see her for the last time, now that's being kind to all parties.
To be brutal John Unless we can get the same reaction from folks when they are told they have Cancer . I doubt it will improve for us ,still i go to the Hospital and asked what my condition is , and the blank looks on faces who should Know, at least the minimum amount about MND , and still the old chestnut comes up Ohh i know, that scientist man in the wheelchair , I have stored my reply for them?.

regards
pete

Smudge
17th December 2012, 21:50
The Neuro Surgeon who looks after John has set up strong links with the Macmillan Locally charity here which is associated to the Macmillan Unit but is not the nation Macmillan Charity. This means that the same palliative care team who look after those diagnosed with cancer also look after MND patients. The MND Association also works closely with the Mac Unit.
The level of support is excellent & the sister assigned to John comes round once a month, along with the speech therapist, OT & Physio. The Neuro Surgeon attends MND meetings & the Sister & consultant from the Mac Unit both attend the Neuro's quarterly clinics. They are our main point of contact for everything & if they can't provide something, they know another department/charity/organisation that do.
I'm not sure if such links exist in other parts of the country to the same extent, but it works brilliantly here. For which we are very grateful.

john
17th December 2012, 23:13
Hi Smudge ,

This is exactly my point. Macmillan nurses and Marie Curie do work with mnd as well as cancer sufferers but these are both charities as well and have to work very hard to raise money for what they do. It really is disgraceful that a rich civilised society like ours should leave the care of people most in need to a collection of charities instead of taking on what should be an NHS responsibility. The NHS just spend it on fat cat doctors and surgeons and increasing layers of bureaurocracy. The have now wasted millions making redundant staff employed by PCTs only to reengage the same people on contracts with the CCGs that replace them. How does that represent value for money for the taxpayer? It really makes you want to scream. Politicians AAAAAAAAGH.

john

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