IM having a home OT assessment tomoorow and was hoping people could tell me what to expect/do?
I was originally referred due to the problems i have with stairs and getting to loo,washing etc when my chest is at its worst but since referral i have also been referred to rheumatolgy with a probable diagnosis of rheumatoid arthritis.
Should i speak to the OT about this during my assessment as this also causes problems but in very different ways to my breathing probs.
I am ideally hoping they will put us forward for a grant to have a wet room built or stair lift and other aids put in place.
Hops, just give your OT as much info as you can. It may be that things like stairlifts are put in a wait and see bracket. Grants are means tested as well so you may well be expected to contribute. I am having a through floor lift and an outdoor one to get me to drive level but that is because of irreversible damage done to my brain when I was so ill almost a year go have left me reliant on a powered wheelchair whilst yes it means I am not pushing the lungs as hard it is the mobility problem that is constant that causes me the biggest problem. I did have to to get another neuro review and have a scan to confirm what was going on. Also be aware there are often huge waits for things unless you are a high priority, which I am apparently but I am still waiting for my lift to arrive! The wheelchair assesment was with a physio, OT and wheelchair technician they do things like look at your house, look at the mobility you have now, again unless you are fast tracked there can be a big wait and the fact you are just about coping at the moment means you probably won't be fast tracked, you would not down here
My OT has been wonderful I really don't know what I would have done without her, they know their stuff and we put some things on the back burner that we have brought forward because things were happening like I was falling a lot so a special lifting me off the floor thing that one person can use They will also contact your various consultants to get from them an idea of your needs today and how things might progress. I email mine at least once a week she is great. I hope you are as lucky as I am in being able to have a good relationship with your OT.
Hugs
Bex
ps I still refuse to have a wet room put in and have my bath with a bath lift, it is the only thing we disagree on!
Hi Bex
Thanks for your input, i known the OT has already been in contact with my resp con and my community matron as it was them that did the initial referral so i know i have their backing -on the mobility side as i have only just been referred to the Rheumatology guys its to early for their input but i know my referral was urgent and im sure my GP would back that up. I'm hoping for a few bits like a kettle rest as i have already dropped a full boiled kettle 3 times in the last 10 days as i cant grip enough . Orthopaedic wise i don't see anyone atm as there is nothing else they can do for my hip but again im sure they would support any suggestions as it was them that sorted my wheelchair.
My cardiologist was surprised how i had been coping too.
As much as i want the assistance it does worry me what impact its having on my kids i know yours are older but how have they coped?
All i know now is that i do need more help physically around the house and the stairs are a big issue as its very frustrating being trapped upstairs/downstairs.
Hops, first you must remember that during a sepsis something went wrong in the fine motor and balence part of my brain. The signal fires off but fails to get to the right place so in the middle of walking one leg will suddenly forget to support me and it happens a lot, it was not progressive I came home like that in december if anything through bloody mindedness I have strengthed muscles that does help at least I am not a total rag doll. It takes 2 strong people to get me up and down stairs one person with a handling belt to move around the house and if I go down they have to let me go, I am assesed as only able to transfer without support and that is transfer from a chair with arms to push myself up on to my bed. My head unless supported lolls around but if it is supported then it is fine the more tired I am the more my head lolls around. So I can drive, because I have a neck/head support cushion pilllow thing and I have a captains chair so my arms get extra support. Howeverm, I can't get out, I can't walk around the car holding on, to open the boot. I can't get the ramps out to get my wheelchair out. Hence an appliction for a grant for a wheelchair accessible vehicle. So you can imagine what walking is like I have to try I keep head up legs going in the right direction and under me. If I had more motor control they woul have fitted rails to give me extra support when walking around.
When Nick goes to Uni on the 19th september I will become trapped in my bedroom because there will be no 2nd adult to get me up and down. The bloke nextdoor has offered to come over and help - he works from home, but I do fall, my family know that and they know the safest thing is to let me go down rather than trying to hold onto me and me bringing them down on me. He is going to have a run through with my physio next week and once or twice a week I will probably make use of him. My lift is on order and we hope it will be in within the next 4 weeks at the latest that will bring me and wheelchair up and down stairs. They would not fit a stairlift because I am considered at risk when transfering and I would need a wheelchair at the top of the stairs and one at the bottom.
I don't mind my children helping me to go up and down stairs Josh can't he is too small. One thing you should get is a tefal one cup, shop around online I got mine for £37 and it means I can safely make a cup of tea because in the same way my legs do random things so do my hands! It is far better than a kettle tipper and many OT's are recommending them.
The problem with the system is it tends to lean towards to people in worst case scenario and then it really works, the hold up with the lifts has been at the manufactoring end not at the OT end. People often need a little help slip through because they are not quite bad enough. I would have thought it would be rails around the house and if you are lucky a stairlift but as you know with the asthma you have to use it or you lose it. I get my lung physio through my community physio who works me very hard as I am not able to toddle around as I used to and then I have my neuro physio who works on keeping what little control I have and to keep the muscles strong so they can help to support me.
Expect them to get more reviews from different physios especially, they don't leap straight in with electric wheelchairs and lifts that is their worst case scenario. The wheelchair physio and OT did lots of strange things to work out what I needed I have no idea to this day what they were measuring or doing, they did not get me to walk I did stand up but most of the stuff was done with me seated. My chair is fantastic so they must have got it right. Every day I need help to make the 3 meter walk to my en suite loo, at night I need to get someone up to walk me to the loo despite grab rails. I can't make my own meals, I can't take myself to the loo and as we have no downstairs loo I have to have commode downstairs, I can't walk out to my car without at least one person and a handling belt and I still had to go through all the assesments before I was fast tracked. I do take risks I admit mainly when I am in the RBH because I get so frustrated however this time I will have Old Sparky with me and I will be wheeling around and relying on little 87 year old women to bring me my tea! I just have to work out how to manage a cup of tea, wheelchair and Iv stand as my tray for the wheelchair and my sheepskin has not arrived but I sure where there is a will there is a way.
What I am trying to say is don't be suprised if you don't get the help you think you need they will explore all other avenues before commiting tax payers money to things like chairs lifts etc. They did with me. I think they have spent about 30k on me so far, that includes the chair, the camel lift to get me off the floor, the through floor lift, the outside lift to get me upto drive level and alterations to the outside and my kitchen so I can get wheelchair under a work surface. As you can imagine they need to know they are spending money correctly, if you have someone working all alterations will be means tested, so expect lots of forms.
I am sorry if this sounds negative it is just I know from other peoples experiences that it can be really long hard haul. On the plus side you are in the system and at least if you expereince a downturn you have passed the 1st bit which is getting an initial assesment and they will be able to see deteriations for themselves.
Good luck
Bex
Sorry Peeps if it looks like Hops and I were playing top trumps with illness, I can assure we were not. I was trying to illustrate that even if you are at the wrong end of the scale you have to jump through many hoops and go through assesements before you get help, mind you I was totally new to the community OT thing and came along with 3 different problems one which was only actually diagnosed in April, and that was because the community OT wanted to know what it was and if it would get better in time.
Hugs
Bex
My mum is an OT and she talks about it a lot at home, so i think (or hope) i know kind of what happens. I think, as Bex has said they will try everything they can before giving you a chair/stairlift or any other equipment. They're very rarely given to people with only asthma (unless very severe) as although it may be easier to get up the stairs with a stair lift there are ways of getting round this. If you feel you need a chair lift, they may look at ways so you dont have to go upstairs so much. Things like a downstairs bathroom and having everything you need for the day downstairs will be tried this way you'll only need to make one or 2 stair journeys a day, which even though may be difficult with asthma are achievable if you take them slowly. In regrds to the arthritis, do mention it , though if you're not seeing anyone for it probably won't make a big differnce. As with the asthma before giving you any equipment they'll try every avenue to find a solution to how you can do it. I hope they can do something for you!!
Thanks for your reply anzharry- unfortunately as well as the asthma and arthritis i also have other health problems including cardiac issues and bladder problems.
I do bring everything i need downstairs but obviously i cant bring the loo down!! I know my community matron is pushing for a wet room and that would solve 90%of the problems.
Oh well she will be here soon!
assessment done
The assessment went well, and i will be having numerous things done/delivered over the next few weeks. I mentioned the arthritis ans she had already been notified so that made things easier.
With regards to the stairlift/wet room - the stair lift is a strong possibility if the 2nd cardiac issue is confirmed but the downstairs wet room is a no no . If the stair lift cant be done then there is a strong possibility of a downstairs loo being installed but we are going to apply for ""grant for disabilities""
If i cant cope the the adaptations in the bathroom then she said then that would have to be concertedm into a wet room instead.
Overall im quite pleased with the outcome -it was better than i hoped.
thanks guys for your support
Hops, glad it went OK, I was lucky the guy from the local council who puts forward the case did all my paperwork he just brought it to me to be signed, frankly I don't think I could have coped with it otherwise. Don't forget they are grants so you might have to contribute and they can say no (although I doubt it) mine went though no problem but bearing in mind the paperwork was done for me between the guy from the local council and the OT I was not suprised. My OT also brought the boss of the grant award thingie over to have a look at the house right at the start of the process, it was him who said the terrace around the house needed decking as it was not safe with patio slab things, I had wanted decking for ages and he just went to the terrace door looked out and said, this is not safe as 2nd fire exit, I was dumb founded. If your OT has a good relationship with the local council things will go a whole lot smoother.
Bex
After my stay in RBH im now home and can test out all my bits - the rails by the loo are fab as are the stair rails (doesnt stop the breathing issues at all). I am looking to trying out the kettle once the OT has come and shown me how to use all the bits. Which will be sometime next week as xant do anything atm due to cardiac op.
I just had my Tloop fitted-got to wait until 22nd for it to be connected to the tv to many wires and have just had my tv retuned- but was charged for him to put it up - it was age concern at £9 an hour he was here an hour and a half he said he worked along side the local ot and fits grab rails etc and yes we have to pay for it to be installed
When was in hospital i asked to see an ot-they kinda forget we are still patients that need help around the house-was because ive been using the door frame to get off the toilet thought be safer that the sink and cheaper to repair!! lol was given a frame that goes over the toilet but its too wide and has a commode feeling to it have been told there is a frame without- but toilet seat wont stay up have tried taking seat off get very breathless doing it and it lasts a few days- they said they would refer me to community ots
Well that was 3rd august i phoned and left a message they got back to me and gave me a local number to call was wrong district but have now got in contact with mine and no referal had been sent-can self refer which i have was told theres a waiting list- so now will be putting pennies in the jar towards paying for fittings!!
Penny
I have come to conclussion that you get an all or nothing approach from the community OT's. Mine bless her came to see me, arranged reports and referals and called up after the appointments rather than wait for a letter, so we could get the ball rolling quickly. Its the damned contractors that are being a pain right now and it has now taken them so long it has been escalated to the top man at the council who is chasing them, so much for ""it will all be done by september"" it is annoying because it is not the councils fault they bent over backwards, even driving home via my house with form to sign before I came up to the RBH.
Son is now threatening not to go to Uni, as I will be stranded without a 2nd adult, he has put off his degree once it is not fair he should have to do it again and his siter says if he can't start his course then it is not fair that she should. I have left a message with my OT again, hopefully something will happen soon.
Hugs
Bex
And theres me can't get rid of my OT!
Shes coming every week and has rung in between I kinda get the feeling that my idea of normal coping strategies and safe ways to do things and theirs are not the same.
More equipment being delivered tomorrow........
I have my OT on open appointment, if i need anything i just need to ring her and she will see what she can do to help.
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