Health
DLA Assessment
22/June/2010 05:51 PM
So, medical reassessment for all in 2013?
If by existing claimant they also mean people like me with progressive impairments / life limited then what a waste of money.
I remember my first two medicals when I could walk a few steps. It was tearful and stressful - like most of these things seem to be.
The first test was scheduled in a GP surgery (considering most GPs had never heard of my condition and 20 years later still don't).
The test was up a flight of stairs.
Between my mum helping (pushing, pulling etc) and my wobbly legs, we made it. I was shattered and it took all my strength. It was also a dangerous thing to do because I could have collapsed and tumbled down at any point.
I got to the top, I remember a few questions about how far I could walk - 1 football pitch, half .... and they basically said if you can walk up a flight of steps you must be fine. Failed.
So I had to appeal. This time I went in my leg splints. I obviously did not look disabled enough. I also entered the surgery in my 'buggy' aka adult pram as they were in those days. Mum lifted me out in front of them and I sat on a chair. I can remember what it looked like, how it felt, the colour and feel of the cold wooden desk I clung onto so I didn't fall flat on my face before I sat on the chair. I can see it all now like a nightmare.
I was told to stand up by the doctor/assessor. I moved my legs a bit and said I couldn't. It was the truth.
He said I wasn't trying hard enough and shouted at me ... PUSH, try harder.
I wanted to cry. I held back the tears, they received a large pay cheque for drilling me.
I passed the test. I was awarded it for life eventually. I hope to God the next medical is not like that. A list of endless questions about what you can't do - just like every social care assessment and review is. Some things never change?
If by existing claimant they also mean people like me with progressive impairments / life limited then what a waste of money.
I remember my first two medicals when I could walk a few steps. It was tearful and stressful - like most of these things seem to be.
The first test was scheduled in a GP surgery (considering most GPs had never heard of my condition and 20 years later still don't).
The test was up a flight of stairs.
Between my mum helping (pushing, pulling etc) and my wobbly legs, we made it. I was shattered and it took all my strength. It was also a dangerous thing to do because I could have collapsed and tumbled down at any point.
I got to the top, I remember a few questions about how far I could walk - 1 football pitch, half .... and they basically said if you can walk up a flight of steps you must be fine. Failed.
So I had to appeal. This time I went in my leg splints. I obviously did not look disabled enough. I also entered the surgery in my 'buggy' aka adult pram as they were in those days. Mum lifted me out in front of them and I sat on a chair. I can remember what it looked like, how it felt, the colour and feel of the cold wooden desk I clung onto so I didn't fall flat on my face before I sat on the chair. I can see it all now like a nightmare.
I was told to stand up by the doctor/assessor. I moved my legs a bit and said I couldn't. It was the truth.
He said I wasn't trying hard enough and shouted at me ... PUSH, try harder.
I wanted to cry. I held back the tears, they received a large pay cheque for drilling me.
I passed the test. I was awarded it for life eventually. I hope to God the next medical is not like that. A list of endless questions about what you can't do - just like every social care assessment and review is. Some things never change?
Cashing in on impairment
19/February/2010 04:54 PM
The company has a web site called Healthful Apps.
Basically, they are Apps that you pay for which list other 'useful Apps' and review them (with user reviews invited).
It's Medical Model in that their site appsforall.net tells carers about Apps so that they can improve the quality of life for those who they care about and for.
Now I appreciate that some people with Alzheimer's may not be able to choose Apps and most of the software is used as 'tools' by care works and therapeutic staff - so aiming the App at health and social care workers may be appropriate.
However, they also make Apps for other people and this is where I felt uneasy.
I am sure that most people on dialysis can choose for themselves which Apps they might find useful - but here you will find one 'for them' called 'Dialysis Apps. It promises to be a 'gift' for those in dialysis and expresses how dialysis is a gruelling experience. Clearly it plays on the tragedy and charity model where disabled people are portrayed as pityful, needy and dependent on the 'gifts' bestowed upon them by the caring none-disabled members of society.
I was not Appy to say the least
Not only is the language quite sickening and disempowering but I had to ask myself is this another sign of cashing in on impairment? Granted it's only a couple of dollars (some individual ones for the equivalent of 59p) but there are lot's of review sites where you can find reviews for free and chat about them on disability forums etc as many people indeed do. Let's not forget the actual Apple App Store review and search functions where quite a lot of disabled people post a review from their own perspective.
The Alzheimer's App talks about Apps to calm and lift the spirit and another on Apps that improve memory.
I have heard of many people using Apps in this way and reaping the benefits - what I dislike is that these just sound so commercial. They are devoid of social model thinking, user engagement/input, empowerment etc and are clearly aimed at giving carers control of Apps they think disabled people should be using.
It gets worse
The Autism App claims to be relevant for people with Down's Syndrome, MS and Traumatic Brain Injury - just to lump people together and maximise profits.
This is cashing in on impairment at it's worse.
Eugenic cleansing in 2010
09/February/2010 03:47 PM
Genetic testing - eugenics in 2010?
Every so often, as a person with a neuromuscular disorder, I receive a magazine detailing genetic research, potential therapies and new ways to test if parents are likely to be carriers of the genetic makeup that could result in a child with that disorder.
Genetic tests are already offered to couples to detect their carrier status and allow for informed reproductive decisions. A new test is to be offered to couples (and possible over the internet) where a sample of saliva can be tested for over 100 inherited impairments - including those similar to me.
The Times, today, quotes it as a "genetic test that would virtually eliminate their chances of having a baby with ...". Let's look at that sentence again 'ELIMINATES'. It's a strong word.
Genetic testing already eliminates babies who would have been born with, for example, the same impairment as myself. The form of this elimination is unlikely to be abstinence and more like increased abortions or selecting none disabled children through IVF, both of which I disagree with. Whilst the tests may reveal a child with that genetic code - it can not tell you to what level their impairment will manifest and when, in most instances. For example, I have MD and some people stop walking when they are small children and others in their 70's where it has had little impact on their life.
One of the concerns I have with couples choosing not to have a child with an impairment is that this decision is likely to be made out of ignorance. The belief that disabled people live terrible lives is still held by so many people who have little or no experience of life as a disabled person. They read in newspapers how some disabled people have such a bad life that they want to end it - so why not just stop that life from starting in the first place or continuing upon conception? Society provides a somewhat gloomy picture to the uneducated which is simply not a true reflection of life as a disabled person in the UK - and not the sort of information couples should base a life/death decision on.
Studies have shown, however, that couples are often provided with only 'worse case scenarios' when information is sought from medical professionals. It is often unbalanced and pessimistic compared to that which might be offered by a national charity support group for example.
For some couples it's the need for the child to give them what they feel is every parent's right - the joy of seeing a child do well at school, graduate, form their own relationships, bring them grandchildren etc. Any child who might not fulfil this selfish desire is another reason not to have them. If you are going to have children - you want the full monty? Of course, disabled people don't necessarily deny anyone these things. Even if they did, should all children not be valued for who they are and not what we want them to become or what they can give us in return later in life? Should not the love of raising a family be unconditional?
Today @lisybabe tweeted an article where a Russian journalist breached professional ethics by promoting the killing of disabled newborns because, amongst other things, their life would be hell. However, not everyone is in disagreement with this journalist. He argued that it is no worse than an abortion. Indeed, in the UK, it is perfectly legal to kill a full term disabled baby through an abortion.
Congratulation on the birth of your baby
I leave you with this thought.
I random search of e-cards on the net brought up cards with the following insert messages:
New parents proudly show and announce their 'perfect' babies to the world and people coo back affirming that perfect and 'bouncing' with 'ten fingers and ten toes' is worthy of congratulations. Are disabled children any less worthy of a joyous welcome into the world - or does it mark their initiation into the world of inequality? I suspect that if mothers were to be asked what did they mean by perfect - they are likely to indicate good health, not disabled or looking and behaving 'normally'. For me, it raises questions about the emphasis society puts on having none disabled children and what we define as 'perfection'. By definition, a child who is not perfect must be imperfect - a word so easily linked to less desirable, not as valued or deserving, dysfunctional or in some cultures shameful even.
The Times article on genetic testing ends with a consultant at Guy's and St. Thomas' Hospital, London, declaring the test as having an uncomfortable 'eugenic flavour' and I believe they are right.
An article I wrote in 2003 on Eugenics and disability.
Every so often, as a person with a neuromuscular disorder, I receive a magazine detailing genetic research, potential therapies and new ways to test if parents are likely to be carriers of the genetic makeup that could result in a child with that disorder.
Genetic tests are already offered to couples to detect their carrier status and allow for informed reproductive decisions. A new test is to be offered to couples (and possible over the internet) where a sample of saliva can be tested for over 100 inherited impairments - including those similar to me.
The Times, today, quotes it as a "genetic test that would virtually eliminate their chances of having a baby with ...". Let's look at that sentence again 'ELIMINATES'. It's a strong word.
Genetic testing already eliminates babies who would have been born with, for example, the same impairment as myself. The form of this elimination is unlikely to be abstinence and more like increased abortions or selecting none disabled children through IVF, both of which I disagree with. Whilst the tests may reveal a child with that genetic code - it can not tell you to what level their impairment will manifest and when, in most instances. For example, I have MD and some people stop walking when they are small children and others in their 70's where it has had little impact on their life.
One of the concerns I have with couples choosing not to have a child with an impairment is that this decision is likely to be made out of ignorance. The belief that disabled people live terrible lives is still held by so many people who have little or no experience of life as a disabled person. They read in newspapers how some disabled people have such a bad life that they want to end it - so why not just stop that life from starting in the first place or continuing upon conception? Society provides a somewhat gloomy picture to the uneducated which is simply not a true reflection of life as a disabled person in the UK - and not the sort of information couples should base a life/death decision on.
Studies have shown, however, that couples are often provided with only 'worse case scenarios' when information is sought from medical professionals. It is often unbalanced and pessimistic compared to that which might be offered by a national charity support group for example.
For some couples it's the need for the child to give them what they feel is every parent's right - the joy of seeing a child do well at school, graduate, form their own relationships, bring them grandchildren etc. Any child who might not fulfil this selfish desire is another reason not to have them. If you are going to have children - you want the full monty? Of course, disabled people don't necessarily deny anyone these things. Even if they did, should all children not be valued for who they are and not what we want them to become or what they can give us in return later in life? Should not the love of raising a family be unconditional?
Today @lisybabe tweeted an article where a Russian journalist breached professional ethics by promoting the killing of disabled newborns because, amongst other things, their life would be hell. However, not everyone is in disagreement with this journalist. He argued that it is no worse than an abortion. Indeed, in the UK, it is perfectly legal to kill a full term disabled baby through an abortion.
Congratulation on the birth of your baby
I leave you with this thought.
I random search of e-cards on the net brought up cards with the following insert messages:
- Ten Little Fingers, Ten Little Toes
- Bragging Rights
- A Purrr-fect baby
New parents proudly show and announce their 'perfect' babies to the world and people coo back affirming that perfect and 'bouncing' with 'ten fingers and ten toes' is worthy of congratulations. Are disabled children any less worthy of a joyous welcome into the world - or does it mark their initiation into the world of inequality? I suspect that if mothers were to be asked what did they mean by perfect - they are likely to indicate good health, not disabled or looking and behaving 'normally'. For me, it raises questions about the emphasis society puts on having none disabled children and what we define as 'perfection'. By definition, a child who is not perfect must be imperfect - a word so easily linked to less desirable, not as valued or deserving, dysfunctional or in some cultures shameful even.
The Times article on genetic testing ends with a consultant at Guy's and St. Thomas' Hospital, London, declaring the test as having an uncomfortable 'eugenic flavour' and I believe they are right.
An article I wrote in 2003 on Eugenics and disability.
NHS wheechair service sucks
26/January/2010 04:08 PM
Archived from October 2006
Here we go again... this saga started on 10th October.
Mission - to obtain a new pressure cushion for my wheelchair. 16x 16 and 3 inches deep called a Trans Flow 600 or equivalent.
Can not find one on the internet to buy privately - they are over £100. I would buy one myself but can't be sure it is the right kind and the most suitable type.
Previously: HERTFORDSHIRE 1) Told OT from social services 2) Showed her the type and gave size 3) She agreed one of the same would do the job and within a few days got the cushion for me.
Compare this to KENT!
I asked my OT (you may remember him from the door saga).
1) He give me local number of NHS wheelchair service.
2) I try them and they only answer phones before midday... I try several times and over the next weeks eventually got through a few days ago.
3) They said that my GP has to fill in a form to send to them with details about my impairment, wheelchair etc (not that they know this).
4) Phone GP - on holiday so I wait to hear from them.
5) District nurse calls I explain the story so far - they tell me to call my OT.... (I think we have been here before). She offer to phone him for me.
Today
6) District nurse calls again - she has called the NHS wheelchair service who need some details.
7) I phone the wheelchair service back up again. They can not give a cushion until they have records from the place who gave me my NHS chair. They need to know model and size of seat....
I explain this was some 15 years ago in Wales - they can not give a cushion without paper work saying the model and the dimensions.
I tell them the model and size of seat.
They want the paper work from previous NHS Trust.
NHS consults with senior manager.
They now want to know where my last cushion came from - that was HERTS - oh.
8) They phone up Herts and they have not heard of me...
It turns out they didn't know I have been married and were asking under the wrong name.
NHS tell me they may have to call my chair an NHS chair in the absence of any paperwork.
I don't care what they call it. I just want a [bleeeep] cushion. I tell them this politely.
9) District Nurse calls - she has to complete the referral form to the NHS clinic (remember this from step 3?)
Nurse does not know size of wheelchair or anything about me - I tell her on the phone. She is very nice and is trying to help. NHS staff sound patronising and un helpful.
10) She writes it on the form and sends it to the NHS staff who I have already told this to several times today.
Now I wait to hear from the NHS Wheelchair people again.....
In the meantime I get a numb bum, frustrated and sore... gee thanks NHS - great service.
Part 2 14 April 2007
Since last September you will remember I was trying to get s plain old cushion to save my numb bum.
I eventually got to test out a load down at the wheelchair clinic and they said they would order one. Because it is contoured it won't fit in my wheelchair without a new backrest - also on order I thought.
About a month ago I wrote to ask where my cushion was as it had been about 3 months since it was on order... they were just about to come and see me (yeahh right). Anyway, by the off chance I was at home and they said they would come up with it.
Whoopeeee I thought.... alas my heart sank when they came in with a new electric wheelchair. - So, they buy a new electric wheelchair at goodness knows what cost compared to trying something with my existing wheelchair (i.e. a new back rest and cushion). The logic was that my wheelchair was old and I needed a new one anyway - yet I had told them I was in the process of doing up a private chair I had bought! Besides this the wheelchair had no head rest, was too high for my PA to lift me up and down from, would not fit under the desk and other places I work from - and so the list goes on! It was the most unsuitable set up for someone with MD and I wouldn't have been able to get in my car to go to work!
Yet - why is it I felt bad about sending it away and suggesting they went to try and find a backrest... because disabled people fight tooth and nail to get an electric wheelchair for years. The system is CRAP.
I even offered to buy the cushion privately - but that was frowned upon because I was officially their responsibility for health, safety and posture (as they kept pointing out) as long as I sat in an NHS chair . What about me - don't I know my body and lifestyle better than anyone - and can't I be my own responsibility?
So it is now April - month 8 of having a numb bum.... Hubby is fast working on my new chair because as soon as that is ready I can 'go private' and they will just hand over the cushion for free!
Here we go again... this saga started on 10th October.
Mission - to obtain a new pressure cushion for my wheelchair. 16x 16 and 3 inches deep called a Trans Flow 600 or equivalent.
Can not find one on the internet to buy privately - they are over £100. I would buy one myself but can't be sure it is the right kind and the most suitable type.
Previously: HERTFORDSHIRE 1) Told OT from social services 2) Showed her the type and gave size 3) She agreed one of the same would do the job and within a few days got the cushion for me.
Compare this to KENT!
I asked my OT (you may remember him from the door saga).
1) He give me local number of NHS wheelchair service.
2) I try them and they only answer phones before midday... I try several times and over the next weeks eventually got through a few days ago.
3) They said that my GP has to fill in a form to send to them with details about my impairment, wheelchair etc (not that they know this).
4) Phone GP - on holiday so I wait to hear from them.
5) District nurse calls I explain the story so far - they tell me to call my OT.... (I think we have been here before). She offer to phone him for me.
Today
6) District nurse calls again - she has called the NHS wheelchair service who need some details.
7) I phone the wheelchair service back up again. They can not give a cushion until they have records from the place who gave me my NHS chair. They need to know model and size of seat....
I explain this was some 15 years ago in Wales - they can not give a cushion without paper work saying the model and the dimensions.
I tell them the model and size of seat.
They want the paper work from previous NHS Trust.
NHS consults with senior manager.
They now want to know where my last cushion came from - that was HERTS - oh.
8) They phone up Herts and they have not heard of me...
It turns out they didn't know I have been married and were asking under the wrong name.
NHS tell me they may have to call my chair an NHS chair in the absence of any paperwork.
I don't care what they call it. I just want a [bleeeep] cushion. I tell them this politely.
9) District Nurse calls - she has to complete the referral form to the NHS clinic (remember this from step 3?)
Nurse does not know size of wheelchair or anything about me - I tell her on the phone. She is very nice and is trying to help. NHS staff sound patronising and un helpful.
10) She writes it on the form and sends it to the NHS staff who I have already told this to several times today.
Now I wait to hear from the NHS Wheelchair people again.....
In the meantime I get a numb bum, frustrated and sore... gee thanks NHS - great service.
Part 2 14 April 2007
Since last September you will remember I was trying to get s plain old cushion to save my numb bum.
I eventually got to test out a load down at the wheelchair clinic and they said they would order one. Because it is contoured it won't fit in my wheelchair without a new backrest - also on order I thought.
About a month ago I wrote to ask where my cushion was as it had been about 3 months since it was on order... they were just about to come and see me (yeahh right). Anyway, by the off chance I was at home and they said they would come up with it.
Whoopeeee I thought.... alas my heart sank when they came in with a new electric wheelchair. - So, they buy a new electric wheelchair at goodness knows what cost compared to trying something with my existing wheelchair (i.e. a new back rest and cushion). The logic was that my wheelchair was old and I needed a new one anyway - yet I had told them I was in the process of doing up a private chair I had bought! Besides this the wheelchair had no head rest, was too high for my PA to lift me up and down from, would not fit under the desk and other places I work from - and so the list goes on! It was the most unsuitable set up for someone with MD and I wouldn't have been able to get in my car to go to work!
Yet - why is it I felt bad about sending it away and suggesting they went to try and find a backrest... because disabled people fight tooth and nail to get an electric wheelchair for years. The system is CRAP.
I even offered to buy the cushion privately - but that was frowned upon because I was officially their responsibility for health, safety and posture (as they kept pointing out) as long as I sat in an NHS chair . What about me - don't I know my body and lifestyle better than anyone - and can't I be my own responsibility?
So it is now April - month 8 of having a numb bum.... Hubby is fast working on my new chair because as soon as that is ready I can 'go private' and they will just hand over the cushion for free!
Loo story with wobbles
26/January/2010 03:54 PM
Archive from 2006
I noticed a recent article where a woman in Chicago went to use the loo in her local book store and is now suing them
In Chicago, a woman claims an unsecured toilet seat in a Borders Bookstore caused her to fall and become “permanently disfigured.”
The seat “shifted to the side,” causing her to be thrown onto the tile floor. The suit said she landed on her bum, causing her to suffer “multiple spine injuries, including the need for multiple neurosurgical spine surgeries.”
It made me recall the time when I was at work in Ashford and assured my meeting room had 1 accessible loo. On arrival I saw a sign 'out of order' I enquired and was dismayed at having to stay there for many hours with no loo to use!
A maintenance guy came back and said oh don't worry, it's just that the seat wobbles as it is broke (giving me a demo of a very wobbly seat that was totally unsafe). Considering I have no balance at the best of times I resigned myself to the fact that I would have to cross my legs. He then said something like 'it's not that far to fall anyway... I'm sure it will be ok'. Eh hmmm. Guess I'll be wetting myself then...
I noticed a recent article where a woman in Chicago went to use the loo in her local book store and is now suing them
In Chicago, a woman claims an unsecured toilet seat in a Borders Bookstore caused her to fall and become “permanently disfigured.”
The seat “shifted to the side,” causing her to be thrown onto the tile floor. The suit said she landed on her bum, causing her to suffer “multiple spine injuries, including the need for multiple neurosurgical spine surgeries.”
It made me recall the time when I was at work in Ashford and assured my meeting room had 1 accessible loo. On arrival I saw a sign 'out of order' I enquired and was dismayed at having to stay there for many hours with no loo to use!
A maintenance guy came back and said oh don't worry, it's just that the seat wobbles as it is broke (giving me a demo of a very wobbly seat that was totally unsafe). Considering I have no balance at the best of times I resigned myself to the fact that I would have to cross my legs. He then said something like 'it's not that far to fall anyway... I'm sure it will be ok'. Eh hmmm. Guess I'll be wetting myself then...
Too pee or not to pee... that indeed is the question
26/January/2010 02:59 PM
During my training I often talk about the most
important things in my life that give me personal
choice and freedom. It fits nicely into the how
Direct Payments could be used more flexibly and
demonstrates rights and freedoms disabled people
aspire to.
My number one thing in life is the toilet - and to hear the full story you will need to sign up to a course! So, of critical importance was to make our own bathroom accessible (cue clever hubby in the DIY field). That was in about 2004 and we are still completing it! Anyway, here is the story so far because I know others have written to me about the toilet in particular - so I have moved it onto the web again.
--
Talking about gadgets, the best invention in my bathroom has to be the vertical toilet riser.
Now you see, for all us none mobile sorts the biggest cause of incontinence is inaccessible toilets. This is a complete bug bear because the amount of thought that goes into designing accessible toilets is equivalent to the intellectual capacity of a goldfish.
Then if you can get into the room - there is the question - can I get on and off. Anyway, at home we have specifically designed our bathroom around easy access for me personally, visual appearance and use of gadgetry to make life easier.
In the beginning...
This was our layout to start with.
1) I need to transfer to my left so the toilet is the wrong way round.
2) Not enough room for hubby/PA to lift and transfer.
3) I need quite a low toilet - lower then normal. However it is really hard to lift me up from a low surface - so some gadgetry is needed.
4) Sink not correct height, shape etc and no room at the side for PA/hubby to wash/dress me.
5) Flooring needed to have enough grip so PAs and myself don’t slip when transferring, but not
so grippy that I can’t slide my feet across the floor to transfer.
6) Door needs to move for access.
Our own design.
Then we have transformed and rebuilt it to a 'wet room' which will have a second door leading to the bedroom if we later install a ceiling hoist. (large brown door on right side).
New features:
1) level entry shower i.e. now a wet room.
2) Door now in middle of the room (where it was originally as the owner had wall papered over the door!
3) Huge space (including shower area) on the floor to move around.
4) Chose a sink that is free standing with nothing underneath for lots of leg room, a big space to wash my hair in the sink (in reach of shower head) and room for someone to stand at the side to wash my hair.
5) A ledge behind the sink for a foot stool - so I can balance.
6) And a unique toilet (see below) with a round, bevelled seat (essential for posture and balance). It’s from Denmark (land of fabby toilets) and features rise and fall (and looks like the Starship Enterprise.
More to follow in future days.
My number one thing in life is the toilet - and to hear the full story you will need to sign up to a course! So, of critical importance was to make our own bathroom accessible (cue clever hubby in the DIY field). That was in about 2004 and we are still completing it! Anyway, here is the story so far because I know others have written to me about the toilet in particular - so I have moved it onto the web again.
--
Talking about gadgets, the best invention in my bathroom has to be the vertical toilet riser.
Now you see, for all us none mobile sorts the biggest cause of incontinence is inaccessible toilets. This is a complete bug bear because the amount of thought that goes into designing accessible toilets is equivalent to the intellectual capacity of a goldfish.
Then if you can get into the room - there is the question - can I get on and off. Anyway, at home we have specifically designed our bathroom around easy access for me personally, visual appearance and use of gadgetry to make life easier.
This was our layout to start with.
1) I need to transfer to my left so the toilet is the wrong way round.
2) Not enough room for hubby/PA to lift and transfer.
3) I need quite a low toilet - lower then normal. However it is really hard to lift me up from a low surface - so some gadgetry is needed.
4) Sink not correct height, shape etc and no room at the side for PA/hubby to wash/dress me.
5) Flooring needed to have enough grip so PAs and myself don’t slip when transferring, but not
so grippy that I can’t slide my feet across the floor to transfer.
6) Door needs to move for access.
Our own design.
Then we have transformed and rebuilt it to a 'wet room' which will have a second door leading to the bedroom if we later install a ceiling hoist. (large brown door on right side).
New features:
1) level entry shower i.e. now a wet room.
2) Door now in middle of the room (where it was originally as the owner had wall papered over the door!
3) Huge space (including shower area) on the floor to move around.
4) Chose a sink that is free standing with nothing underneath for lots of leg room, a big space to wash my hair in the sink (in reach of shower head) and room for someone to stand at the side to wash my hair.
5) A ledge behind the sink for a foot stool - so I can balance.
6) And a unique toilet (see below) with a round, bevelled seat (essential for posture and balance). It’s from Denmark (land of fabby toilets) and features rise and fall (and looks like the Starship Enterprise.
More to follow in future days.
Naidex - the alternative review.
26/January/2010 02:50 PM
April 2006 - An alternative view to the value of
Naidex.
This week is Naidex week. For all you none-disabled sorts - that's the NEC Birmingham Show for all things related to disability equipment.... or at least that was my memory of it.
It used to be the 'try it and see' for health and social care staff and of course 'we' the great public. - Everything from accessible kitchens and bathroom equipment to the latest in colostomy bags and leisure things (my favourite being the wheelchair accessible roundabout and swing for children - I wish they had them for big kids as well!!).
Some things you thought - never in a million years will disabled people want one of them in their homes because it looks horrible, uncomfortable and only comes in 'medical green' as a colour option .... only to overheard an OT place an order for 500. Do they ever learn... no I think NOT.
I happened to be browsing the list of exhibitors last nights and the latest inventions that are up for 'an award'. Oh how things have changed over the years.
Fantastic NEW products include....... The Great John. Of course this can only be one thing - a reinforced toilet for obese people which boasts a 200% larger seat and - you guessed it is an American invention. A new commode and large wheelchair ... for Bariatric patients (obese people)... and so on. Can you see a theme here.
The UK is now benefitting from more disabled people (to balance the demise of our people due to genetic testing LOL) and of course there needs to be appropriate adjustment in the equipment field.
Also in the past years there has been a rise in the number of stands devoted to discrimination (yes the DRC are there) and organisations of disabled people - now we are getting somewhere - life isn't always about trying to 'fix us' in some way with a bit of equipment.
What does make me angry - the cost of these 'liberating' gizmos.... see my other posts.
This week is Naidex week. For all you none-disabled sorts - that's the NEC Birmingham Show for all things related to disability equipment.... or at least that was my memory of it.
It used to be the 'try it and see' for health and social care staff and of course 'we' the great public. - Everything from accessible kitchens and bathroom equipment to the latest in colostomy bags and leisure things (my favourite being the wheelchair accessible roundabout and swing for children - I wish they had them for big kids as well!!).
Some things you thought - never in a million years will disabled people want one of them in their homes because it looks horrible, uncomfortable and only comes in 'medical green' as a colour option .... only to overheard an OT place an order for 500. Do they ever learn... no I think NOT.
I happened to be browsing the list of exhibitors last nights and the latest inventions that are up for 'an award'. Oh how things have changed over the years.
Fantastic NEW products include....... The Great John. Of course this can only be one thing - a reinforced toilet for obese people which boasts a 200% larger seat and - you guessed it is an American invention. A new commode and large wheelchair ... for Bariatric patients (obese people)... and so on. Can you see a theme here.
The UK is now benefitting from more disabled people (to balance the demise of our people due to genetic testing LOL) and of course there needs to be appropriate adjustment in the equipment field.
Also in the past years there has been a rise in the number of stands devoted to discrimination (yes the DRC are there) and organisations of disabled people - now we are getting somewhere - life isn't always about trying to 'fix us' in some way with a bit of equipment.
What does make me angry - the cost of these 'liberating' gizmos.... see my other posts.
Some archived blogs
26/January/2010 02:24 PM
Today I am moving some blog posts from a past blog,
over onto IforI. Starting with this one from the
Archives:
January 2006: Maidstone Hospital - no access
Today I received a phone call saying they wanted me to go for a Barium swallow on Thursday. Despite having changed my name twice at the clinics they still had me under my maiden name which confused the issue. I then said a 'by the way, I'm a wheelchair user', to which they replied 'ah, that could be a problem.' Does anyone actually read medical notes - its pretty obvious! Apparently the room where they are doing them is not accessible due to moving around of departments or something. The lady was very polite and said she would find out what they could do....
A later phone call that day.....
Now they had booked for me to have it in an accessible room..... I then enquired 'how do you plan on doing this'.... she said 'eh... why' to which I reminded her that I could not sit unaided out of my wheelchair (although she said they had a hoist to get me out of my chair) and also could not hold a cup to drink the barium 'meal' for scan of how I swallow! She said that could be a problem and would have to consult with someone higher up as to what to do and so as to not waste my time or theirs coming in until they had worked something out.
So there you go. It's easy for these medical types to say ' do a scan' but they never put any thought into the needs of patients with impairments.... 0/10 my friends.
Part two... January 26th, 8 weeks from seeing my GP.
So my appointment came through giving no indication of access so I had to phone them to check.
It took two laps of the car park to find parking and then an icy walk into the main building... brrrrrr.
FROM A to B
Anyway I walked from shall we say part 'A' of the building all the way to part 'B' at the opposite end of the hospital.
FROM B to A
On arrive at radiology in part 'B' I was told 'sorry' you need to go to CT as they are doing them up there today'...... so off I went with my PA. There were no signs and asking local wards where this quite critical part of the hospital imaging department is - they hadn't a clue.
Eventually I worked out is was in the cancer unit - back up at part 'A'. So off we went.....
On arrival at reception I was told 'sorry, yours is being done at radiology'.... grrr......
FROM A to B
Back we plodded along miles of corridors to the opposite end of the hospital again.... 2 miles later....
Eventually I had to transfer (for transfer read ' be dragged/slided') to three different places because of different height beds / tables etc.
Eventually I made it and got the thing done - with no great conclusion as to why or what to do about my problem... Still at least it wasn't anything cancerous or that would have topped the day of nicely!
FROM B to A
All that remained was to trek back to 'part A' to get in the car.... now where was CT again?
January 2006: Maidstone Hospital - no access
Today I received a phone call saying they wanted me to go for a Barium swallow on Thursday. Despite having changed my name twice at the clinics they still had me under my maiden name which confused the issue. I then said a 'by the way, I'm a wheelchair user', to which they replied 'ah, that could be a problem.' Does anyone actually read medical notes - its pretty obvious! Apparently the room where they are doing them is not accessible due to moving around of departments or something. The lady was very polite and said she would find out what they could do....
A later phone call that day.....
Now they had booked for me to have it in an accessible room..... I then enquired 'how do you plan on doing this'.... she said 'eh... why' to which I reminded her that I could not sit unaided out of my wheelchair (although she said they had a hoist to get me out of my chair) and also could not hold a cup to drink the barium 'meal' for scan of how I swallow! She said that could be a problem and would have to consult with someone higher up as to what to do and so as to not waste my time or theirs coming in until they had worked something out.
So there you go. It's easy for these medical types to say ' do a scan' but they never put any thought into the needs of patients with impairments.... 0/10 my friends.
Part two... January 26th, 8 weeks from seeing my GP.
So my appointment came through giving no indication of access so I had to phone them to check.
It took two laps of the car park to find parking and then an icy walk into the main building... brrrrrr.
FROM A to B
Anyway I walked from shall we say part 'A' of the building all the way to part 'B' at the opposite end of the hospital.
FROM B to A
On arrive at radiology in part 'B' I was told 'sorry' you need to go to CT as they are doing them up there today'...... so off I went with my PA. There were no signs and asking local wards where this quite critical part of the hospital imaging department is - they hadn't a clue.
Eventually I worked out is was in the cancer unit - back up at part 'A'. So off we went.....
On arrival at reception I was told 'sorry, yours is being done at radiology'.... grrr......
FROM A to B
Back we plodded along miles of corridors to the opposite end of the hospital again.... 2 miles later....
Eventually I had to transfer (for transfer read ' be dragged/slided') to three different places because of different height beds / tables etc.
Eventually I made it and got the thing done - with no great conclusion as to why or what to do about my problem... Still at least it wasn't anything cancerous or that would have topped the day of nicely!
FROM B to A
All that remained was to trek back to 'part A' to get in the car.... now where was CT again?
A good night's sleep
09/November/2009 02:47 PM
Blogging about my experiences of health care has now
moved onto this site.
I usually write about hospital fiascos and poor NHS health care - perhaps more appropriately they should come under the title ‘near death experiences’. I would like to say health care is really good - but sometimes the trials and tribulations to get that care are nothing to really laugh about.
So, here we go with the latest quest to answer an important question ‘Do I nearly die when I go to sleep?’.
Now, this is quite an important question as I am rather fond of living - and the fact that sleep is something one tends to do on a regular basis is a little concerning. According to my neurologist either now or in the future my attempts to breath whilst dreaming will decrease - and effectively my oxygen saturation will plummet to about 40%. Now, most of my consultants don’t remember I have a medical degree and I know that we used to declare patient’s a gonner at about that mark. So it’s a tad worrying.
The idea was simple - take home a pulse oximeter that will record my oxygen saturation levels over night. I would borrow a machine locally and that would be that.
Of course it’s never that simple. I then get a letter from the sleep clinic attached to my specialist in Oxford (this is over a 2 hour journey from my house). They say I need to pick up their machine and drop it off the next day. Two problems with this - it’s too far to travel and I was working the next day. The letter said the machine was in great demand.
Now I have to call them and explain that my consultant said I could borrow a more local machine. They tell me they are the only ones in the country with this particular device. Hmm, not convinced there are no portable O2 recording devices in the whole of the UK other than this one. I explained that I would have to book a hotel and rearrange the date. They offered my the choice of staying in the clinic but they didn’t seem to understand about my night time needs (I can only sleep on a particular mattress, with a whole bunch of pillows and a willing hubby to get up during the night and turn me). It would be much easier to take those items into a hotel rather than a hospital. Now this sleep study was becoming expensive - probably over £100 at this point. Anyway, I booked a date and left it at that.
The other night I get a phone call from the sleep clinic making sure I was coming in the next night. This wasn’t my original or new date! ‘Eh, what’s you name then”, went the conversation. So they had the wrong patient. I did manage to once again explain my situation and ask if anything could be done more locally. She kept telling me how great this machine was and that it would detect my night time movement and everything - I tried to explain I can’t actually move at night so most of the technology will be lost on me! This seemed to be news to her - obviously not read any of my notes! Again I am retold how great the movement detectors are.... hmmm, someone isn’t taking this in.
The lady was very helpful though and asked why we weren’t being sent the machine by courier to make it easier. I wasn’t told this was an option. Apparently the machine isn’t in demand and is available any time in the next few weeks!
I now await a phone call saying when the courier will arrive with my all singing dancing sleep machine - let’s hope I can actually go to sleep that night! Ahhh ZZZzzzzz
I usually write about hospital fiascos and poor NHS health care - perhaps more appropriately they should come under the title ‘near death experiences’. I would like to say health care is really good - but sometimes the trials and tribulations to get that care are nothing to really laugh about.
So, here we go with the latest quest to answer an important question ‘Do I nearly die when I go to sleep?’.
Now, this is quite an important question as I am rather fond of living - and the fact that sleep is something one tends to do on a regular basis is a little concerning. According to my neurologist either now or in the future my attempts to breath whilst dreaming will decrease - and effectively my oxygen saturation will plummet to about 40%. Now, most of my consultants don’t remember I have a medical degree and I know that we used to declare patient’s a gonner at about that mark. So it’s a tad worrying.
The idea was simple - take home a pulse oximeter that will record my oxygen saturation levels over night. I would borrow a machine locally and that would be that.
Of course it’s never that simple. I then get a letter from the sleep clinic attached to my specialist in Oxford (this is over a 2 hour journey from my house). They say I need to pick up their machine and drop it off the next day. Two problems with this - it’s too far to travel and I was working the next day. The letter said the machine was in great demand.
Now I have to call them and explain that my consultant said I could borrow a more local machine. They tell me they are the only ones in the country with this particular device. Hmm, not convinced there are no portable O2 recording devices in the whole of the UK other than this one. I explained that I would have to book a hotel and rearrange the date. They offered my the choice of staying in the clinic but they didn’t seem to understand about my night time needs (I can only sleep on a particular mattress, with a whole bunch of pillows and a willing hubby to get up during the night and turn me). It would be much easier to take those items into a hotel rather than a hospital. Now this sleep study was becoming expensive - probably over £100 at this point. Anyway, I booked a date and left it at that.
The other night I get a phone call from the sleep clinic making sure I was coming in the next night. This wasn’t my original or new date! ‘Eh, what’s you name then”, went the conversation. So they had the wrong patient. I did manage to once again explain my situation and ask if anything could be done more locally. She kept telling me how great this machine was and that it would detect my night time movement and everything - I tried to explain I can’t actually move at night so most of the technology will be lost on me! This seemed to be news to her - obviously not read any of my notes! Again I am retold how great the movement detectors are.... hmmm, someone isn’t taking this in.
The lady was very helpful though and asked why we weren’t being sent the machine by courier to make it easier. I wasn’t told this was an option. Apparently the machine isn’t in demand and is available any time in the next few weeks!
I now await a phone call saying when the courier will arrive with my all singing dancing sleep machine - let’s hope I can actually go to sleep that night! Ahhh ZZZzzzzz
Naidex blooper spotted.
11/January/2009 07:51 PM
Pop along to Naidex web-site.
I am researching accessible layouts of exhibitions and thought I would see what the NEC has to offer where Naidex is held.
“As the UK’s largest event for homecare, disability and rehabilitation. Naidex is your best opportunity to touch, test and compare all the latest new products and services available.”
So, I clicked on ‘visiting’ and then onto frequently asked questions.
Would this site answer it? No. I found this:
“What are the disabled facilities?”
and the link went to a dead page.
Hmmm... is this a conspiracy to prevent disabled people from finding out about access.
I don’t think exhibition venues actually look at access within the great halls. A maze of stands, flyers sticking to your shoes that have found their way onto the floor and a phobics nightmare if you ‘don’t do the people thing’. Not to mention the buzz of thousands of voices and even scarier - lots of therapists milling around. Aghhh.
It’s a nightmare.... I don’t care how many accessible parking spaces and toilets they have. This does not an accessible venue make, dear Sir.
Pause for thought
02/May/2008 03:50 PM
"The best way to predict your future is to create it."
I work with many people who are influential in the lives of disabled people. Many of them will influence health and social care - either as policy or decision makers, assessors or advisors.
Every UK citizen will also make decisions which affect the lives of disabled and older people. Through our democratic voting - we are choosing who we want to influence our future and the way they will do it.
It is perhaps wise for us all to think that one day, older age or impairment may well creep in. Have we chosen our future wisely or will we regret what we have done or failed to do?
Today I am compared to Stephen Hawkins
29/February/2008 07:10 PM
It is good practise, when serving a disabled
customer, NOT to do what my optician did yesterday by
asking how long I had needed a wheelchair and why. I
explained I had MD and he said 'oh yes just like
Stephen Hawkins'. Shame he was totally wrong and was
only comparing our bodies rather than our minds - I
wish!
Disability Equality applies to how you address a disabled person and you can be in breach of the DDA because you wouldn't ask a none disabled person such personal questions that have no significance to providing a service. It brings undue attention to a person's impairment where it isn't needed. I personally find it frustrating and annoying.
Disability Equality applies to how you address a disabled person and you can be in breach of the DDA because you wouldn't ask a none disabled person such personal questions that have no significance to providing a service. It brings undue attention to a person's impairment where it isn't needed. I personally find it frustrating and annoying.
