General Chat

hi ive already posted on this thread about abuse of the system,whimeans that people who really need things cant get them,because in a nut shell,the local trust and council have no money left.here in north wales people who need stair lifts have to buy them themselves because they cost a lot of money and are a strain on the trust or council(whoever is buying them).
as a nurse(paedriatrics)ive seen a lot of abuse of the system,one family that spring to mind really knew how to get what they wanted.
they had a son with severe special needs looked after 24hrs a day by a team of devoted people,his family decided that he needed a mini bus(his wheelchaire wouldnt fit in to a normal family car)they went on and on to the trust and council until they backed down,and in may 2009 a brand new 9 seater minibus was delivered to the front door,not just any mini bus,but one with every mod con going,at the cost of about 22,thou. the second day we all(me included)went to the beach(2miles away)we stayed for about half an hour,the second trip was to see a dr 20miles away,and that was it,that lovely minibus has been in the drive(looking lovely)ever since,and before any one asks if i have complained,of course i have,but it all falls on deaf ears.i will always remember what my sister went through when her very handicapped daughter had a major op on her legs,it was 7yrs ago now,she had major surgery in alderhay and was in a cast foreveral months,my sister and hubby brought her bed downstairs ,but my sister who is 7stone and a size 8 was expected to carry her 14yr old daughter plus cast up the stairs every time she wanted to go to the toilet(her hubby was at work during the day)after begging her council for a commode with no luck)she went out to argos and bought one.xx

My Oh hasn't been upstairs for over 3 years.fortunately we have a smallish room downstairs near the downstairs bathroom which we made into a bedroom for my mother when she visited.We have bought a lift up double bed,a lift up bath seat,which he can no longer use,a recliner massage chair etc etc.
A few months ago when his lung problem got much worse we got in touch with Social Services and they provided us with a raised toilet seat(which is very uncomfortable so I bought a padded top for it) and a commode which he has only used once.A week ago they brought a wheelchair to take him from his chair to bed,but it is a bit of a strain for me but we do what we have to do!
Regarding the leg/night bags.I have had a lot of different ones till we found the ones that were suitable and I tried to give them,all in sealed packs,to the district nurse and she said they are not allowed to carry any equipment in their cars!!!As I loathe waste I contacted the Incontinence nurse at the local hospital and she took them.
I think the same about pills etc.some given wrongly,not out of date,I don't see why they can't be given back as they are in sealed strips.They do in Spain and given to the Sisters of Mercy.
Getting back to Diizi's problem....I think you have to pester them a lot till they get fed up...says she who has only just been this way and never asked for benefits,but those who know the ropes seem to get everything!!

good luck Dizzi..hope they soon sort you out!

Brenda x x

I was given a perch stool so I can sit while cooking and ironing, which is a great help..

Jules x

I got around the stairs problem by moving to a bungalow. I my place is a private rental so they could kick me out at any time and I cannot have any adaptions done like wet room or fixed grab rails.

I have never asked for anything just gone out and bought them scooter, wheelchair and rollator....two years later I get a physio vist and they have given me a stool and a toilet frame for the bathroom so things are looking up

jax

Dizzi, why not put in an Urgent request for a "Bosuns Chair" telling the powers that be that it is the only alternative to a Stairlift and they won,t give you one of those.**M** ;-) :-S

Dizzi,

I have a stairlift (we bought it) but as a means of exercise I walk up and down once a day. However due to a stupid physiotherapist in the early days I had an inborn horror of walking down.

After 18 months, I can now walk down but not normally or backwards but sideways whilst holding onto the bannister! Can you try that?

LOL CAROL
TRYED THE BACKWARDS BUT THE BRAIN AN LEGS
SORT OF LOOSE COMUNICATION AND YOU KNOW ME....REMEMBER L***LS FREEZER..SO FUNNY THINKING ABOUT IT NOW.
LEGS STOPPED BODY STILL GOING FALL ONTO YOU..BOTH OF US NEARLY LANDED IN THE FREEZER...WHAT DID WE DO...LAUGHED SO MUCH
WE NEARLY PMSL..

OH WE HAVE GOT BANNISTER RAIL BOTH SIDES ,GRAB HANDLE AT THE TOP.

Just how steep are your stairs Dizzi?

Oh well, just make sure no-one is at the bottom of the as I come down them on my tummy ,

bumpety,


bumpety,


bump,


bump,



bump


wheeze


wheeze

wheeze.

It seems to me that you need to complain about your occupational therapist .She is not carrying out her job efficiently.

Has your doctor seen your stairs? You certainly need him on side.

I feel for you Dizzi as I know what you are going through...I cant do satirs and when I do its the getting down thats the problem...A few moths ago when i came out of hospital i fell down them and couldnt get back up them again for quite a while which meant sleeping on the sofa and going to the loo in a bucket!! Not very dignified I can tell you.....
Thank fully now I am moving to a bungalow with a wetroom as I cant get in or out of a bath...

You must be able to help with the cost of a stair lift...My uncle had one fitted free of charge when his wife had MS....I don't know how he went about it as due to a family rift we dont speak anymore...Maybe you should ring the council and ask for adult social services or an OT, they maybe able to help....

Jules x

Iam ashamed to say that I have ordered things we don't need. The wheeled one is catheterized. I do theprescription ordering but don't get involved with the mechanics of it,yuk,yuk,yuk.

Each month for four and a half years now I have ordered leg bags and night bags which the carers stow away in the cupboard with the incontinence pads and all the other exotic stuff.

I had to look in there recently. It is packed full of leg bags. It just had never ocurred to me that leg bags are changed weekly and night bags nightly.

No charity tha I have come across will take them.If they go back and I must have thirty years worth.It is highly unlikely that he will live to 121.

When he had his peg removed we had to send several boxes of liquid food pouches which cost mega,to be destroyed.

Hello Dizzi. I was just going to suggest what Liz suggests. No, not the parachute but going down backwards. I had 3 falls down our stairs before I decided to try that and it is so much better. If you stumble you are more likely to land on your knees than do a couple of flips down the stairs. And with my bifocals it is easier to see where I am putting my feet. My husband thought it looked very unsafe, but it felt a million times safer.

Huia.

Gwen, have you tried coming down the stairs backwards, i.e. the way a child would be going up and taught to come down again, so one hand on the banister and stepping back down one step at a time. That way if you went a bit weak kneed you could just hold on and kneel if necessary, even come down on your knees with your big bum getting to the bottom before the rest of you lol
Seriously, hope you can keep managing but maybe look out for a secondhand stair lift, they are often advertised in our local papers for a lot less than the new price. Or ask on gumtree etc if anyone has one they no longer need.

You could also try a parachute of course, down the stairs or out the window, just think what fun that would be!

love
Lizxx

What I do know Joeva is you have to make a big fuss to get things done, and generally when you're feeling ill is not a good time.

The people who do the assessing have no idea what it's like , their job is not to spend any money.My Mum is deaf/blind and we ended up going to her MP to get her the help and equipment she needed to live at home., we made a big noise at the local paper too !
Mum wouldn't have done it on her own as she believed what she was told,you really have to fight to get things done .

I couldn't have guessed I'd have to rely on an electric chair and the kindness of others,and sometimes I have to get a bit shouty to get things done !

Hi Dizzi

Last year I had a fall and fracture my back and I truly understand how difficult
it is to navigate getting upstairs. Fortunately I have overcome this.

So I do sincerely understand the extent of your ongoing problem.

Best wishes

Jo

So Lindsey, Why are you telling us this.? You have seen Dizzi's post.


Once again I say I have to say people know of this dreadful situation and do nothing about it.

I dont fancy pulling out the splinters !

NEVER MIND,I GET BY
NOW THAT TRAY IDEA MMM

IM ONLY JOKING,,LOL ,,HONEST
ANYWAY MY BUMS TO BIG
FOR THE TRAY

AND THBE TRAYS PLASTIC

I could take you to a double garage sized space under SS offices , you would not believe the amount of hoists, walking frames, and vital equipment piled to the ceiling that has been there for years, when folks are crying out for them.

I just can not understand how they dare say there is no money or help available.

I looked after someone who was paralysed , on a breathing machine and the local council built a purpose made bungalow, some get it all others nothing .

Hi Suzanne- i didn't actually read your reply on the thread until now. - I do understand what you saying. I have a GP that has a reputation of not prescribing. I have heard him say this thus 'I don't prescribe very often'
This is absolutely true. That is the reason if need be I get an appointment when I phone for the same day !
I have had the same Gp for over 20 years and for the most part I have got by without medication, but he has been superb in getting me into the referred to hospital departments.