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How to get from 20 years higher mobility to zero points
kandarohi
Member Posts: 11 Connected
When the PIP assessor comes to your home, zoom in your powerchair to the sofa. Then, without showing signs of fatigue, pain, dizziness, and distress- transfer onto the sofa.
You will also lose your ESA, and housing benefit at this point, have to pay for prescriptions and full council tax payments. You can turn up in your powerchair at a food bank or maybe later at a homeless centre. Your challenge, since you have fought your own body and endured much greater hardships ...is to live by candlelight with a large quanitity of jumpers on, washing with cold water and establish if you have any real friends. And to eat as much food that is past its best before date as possible, without getting a stomach upset. If you survive a year you will have learned the true meaning of transferring to your sofa. That this one action makes you realise there are 2 types of person. Those who act like robots, following a procedure without any emotion because our society promotes this as good work practice. And then there are human beings, who are amazing and horrible and interesting.
The face to face assessor is a robot following an automated system of rules. We might look like daleks in our powerchairs but we are human beings. We need to unautomate our world and let humans prevail.
BTW I am Daniel Blake nice to meet you all. Temperature is going to near zero next few nights. I shouldnt be considering keeping my heating off but I am.
I became bedridden with Myalgic Encephalomyelitis in 1998 After 6 years I was barely able to speak, being given bed baths. I had to sit still without conversation all day for 2 years. No TV no music, no radio, no situmalation. Just wall staring. carers would open my commode potty and walk past me with it as I tried to eat. After 10 years of all this I was improved a bit able to get around the house and go out relying on wheelchair. After 20 years working my ass off wall staring I am now able to put a microwave imeal to cook, bath myself, and wash some pots. I am only able to do this because I minimise my walking so then my tiny amount of energy is directed to self care and a small amount of enjoyable activities. BUT to use energy on these enjoyments is not doing my full duty of devoting 100% to self care! So after 20 years of hell, any enjoyment is a crime and obviously I should stop all this solcialising and moving my arms around for fun eg waving at a friend and use this energy to see if I can get to the kerb outside my house rather than not walking beyond my front door. Maybe if I stop all activities expet eating drinking and bathing, I would have enough energy to get to that kerb & then they could declare me to no longer need a powerchair. At this point I would have 2 meals a day and sitting on the kerb as my outing. I would be so happy with this amazing lifestyle the great plan DWP has for me! But before we start this great plan I must be starved of heating baths, lighting, food, hot drinks, prescription meds for a minimum of 12 months.
Welcome to England 2020
You will also lose your ESA, and housing benefit at this point, have to pay for prescriptions and full council tax payments. You can turn up in your powerchair at a food bank or maybe later at a homeless centre. Your challenge, since you have fought your own body and endured much greater hardships ...is to live by candlelight with a large quanitity of jumpers on, washing with cold water and establish if you have any real friends. And to eat as much food that is past its best before date as possible, without getting a stomach upset. If you survive a year you will have learned the true meaning of transferring to your sofa. That this one action makes you realise there are 2 types of person. Those who act like robots, following a procedure without any emotion because our society promotes this as good work practice. And then there are human beings, who are amazing and horrible and interesting.
The face to face assessor is a robot following an automated system of rules. We might look like daleks in our powerchairs but we are human beings. We need to unautomate our world and let humans prevail.
BTW I am Daniel Blake nice to meet you all. Temperature is going to near zero next few nights. I shouldnt be considering keeping my heating off but I am.
I became bedridden with Myalgic Encephalomyelitis in 1998 After 6 years I was barely able to speak, being given bed baths. I had to sit still without conversation all day for 2 years. No TV no music, no radio, no situmalation. Just wall staring. carers would open my commode potty and walk past me with it as I tried to eat. After 10 years of all this I was improved a bit able to get around the house and go out relying on wheelchair. After 20 years working my ass off wall staring I am now able to put a microwave imeal to cook, bath myself, and wash some pots. I am only able to do this because I minimise my walking so then my tiny amount of energy is directed to self care and a small amount of enjoyable activities. BUT to use energy on these enjoyments is not doing my full duty of devoting 100% to self care! So after 20 years of hell, any enjoyment is a crime and obviously I should stop all this solcialising and moving my arms around for fun eg waving at a friend and use this energy to see if I can get to the kerb outside my house rather than not walking beyond my front door. Maybe if I stop all activities expet eating drinking and bathing, I would have enough energy to get to that kerb & then they could declare me to no longer need a powerchair. At this point I would have 2 meals a day and sitting on the kerb as my outing. I would be so happy with this amazing lifestyle the great plan DWP has for me! But before we start this great plan I must be starved of heating baths, lighting, food, hot drinks, prescription meds for a minimum of 12 months.
Welcome to England 2020
Replies
I don't come on here much nowadays because I can't stand reading everyone's bad dealings with the DWP, I've been campaigning like many others I know too. I truly believed the Tories would have been kicked out of office and replaced by a Labour caring government? I even did their campaign video for them which highlights all the issues like PIP,UC,WASPI etc. To see the video look in my signature and have a look.
Sadly it was not meant to be a Labour government .... I can't believe the people voted for the Tories, yes even people on UC and other benefits voted for the because they wanted Brexit done, well they've certainly will pay the price now for this disgusting situation we are all in.
Im sure I'm right now I believe some people are so narrow minded, and only think of themselves, and or love seeing people suffer even more, when the likes of (IDS) Iain Duncan Smith gets knighthood for creating degrading UC and PIP system he has created, that man should pay for crimes against what he done and has created. I won't go on anymore regarding that (man) otherwise I will get into trouble.
Yes we did get a few things changed for the better with the DWP but now the Tories have a majority I feel things won't get any better any time soon.
Its so heart breaking that the Tories are now back in charge for the foreseeable future.
@poppy123456 if your reading this, I hope your okay and well as can be❤️I can't take much more from this government I will fight them til the day I die. You know what I mean.
I created one of the campaign election videos for Labour, and Jeremy Corbyn,
This is a new version of Emeli Sande, Hope "You Are Not Alone
You can see the video here.
https://m.youtube.com/watch?v=P5o8hRHh9IY
Request for Mandatory Reconsideration
I am writing to ask you to reconsider your decision dated 31-12-2019 about my Personal Independence Payment claim.
I have Myalgic Encephalomyelitis
It is a condition where overexertion does physical long term damage to the body. When I do a small amount of activity I get physical signs of distress. If I ignore these and continue my disability increases. In the early stages of my illness became bedridden due to overexerting as my abilities reduced so significantly. I couldn't speak, chew my food and was confined to my bedroom for 2 years. Asking me to overexert now- for example to remove my funding for my electric wheelchair- if I do overexert I will become bedridden again. Please don't make me a prisoner in that bed again I am begging you. With the powerchair I can go out every day. I have a disability ramp and in the last few months got automated opening on my front door. I use the electric wheelchair to go shopping, socialise. I travel by bus in the electric wheelchair. I spent over £1000 in the last 12 months on mobility equipment. I can't pay for all this with ESA alone.
I believe the decision did not properly take into account how my disability affects me.
I cannot cook a simple meal using a conventional cooker but is able to do so using a microwave. This is because it is too tiring to wait by a stove. any fresh food I would have to goto my bed to wait for it to cook which isnt safe. Therefore I get quick cook ready meals. I have a chair I sit on in the kitchen because standing is too tiring.
I need either prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or prompting or assistance to be able to select appropriate clothing. This is because dressing is very hard work. Lifting things over your head. Therefore I change my outfit once every 2-3 days to save energy. I use the energy I save to then be able to prepare the microwave ready meals and brush my teeth etc. If I changed my clothes at bed time and morning I would then be too ill to do these meals, get myself a drink etc. So I have no choice but to not dress myself. I have made this plan to try to reduce my reliance on other people.
I can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. This is because if I walk more than 20 metres I develop fluish symptoms and chest pains. This is what happens to people with ME. It sounds pathetic to someone who hasnt experienced it. If I ignore these symptoms and carry on they become much more severe. If I ignore this and carry on, I develop symptoms where if I speak more than 1-2 minutes I develop fluish symptoms or if I listen to people talking I develop the symptoms. At this point I become bedridden needing bed baths. I cannot get to the microwave or bathroom. By STOPPING when the fluish symptoms arise I have become capable of getting to the bathroom, kitchen, microwave and can go outside in my electric wheelchair. I can socialise, talk in a conversation up to 1 hour. All this is because I have not continued when the fluish symptoms arise.
The exhaustion and disability damage done from walking over 20 metres cannot be undone by a few days in bed. I have spent 20 years resting and I still cannot walk 20 metres. What that 20 years of resting and not pushing beyond my energy levels has done has made it so I can now type this letter, and that I have made myself less of an expense. I would like to be less of an expense. But I do need my electric wheelchair. Without it my life is over. I can't spend life age 45-65 unable to leave my house. It's a death sentence for me. Please I beg you do not take away my electric wheelchair and bus pass.
Thank you for reconsidering the decision.
Yours sincerely
Michelle Wyatt
Error?
This post rewrote for @kandarohi above, as their original post is hard to read with it all over the place.
is this any good? I can send further evidence before 4 week deadline..they already have all the receipts for my powerchair + repairs
I created one of the campaign election videos for Labour, and Jeremy Corbyn,
This is a new version of Emeli Sande, Hope "You Are Not Alone
You can see the video here.
https://m.youtube.com/watch?v=P5o8hRHh9IY
I can do most of the self care tasks because I have the electric wheelchair.
Dear Sir/Madam
RE: *************
NI: J*******B
Request for Mandatory Reconsideration Letter 2
I am writing to ask you to reconsider your decision dated 31-12-2019 about my Personal Independence Payment claim.
I have Myalgic Encephalomyelitis
The decision that was made is based on a belief by Alan **** that I do not need an electric wheelchair. This letter is an explanation of my abilities WITHOUT using electric wheelchair as an aid. The previous letter I sent dated 09/01/20 is explaining my daily living situation and abilities if I DO have an electric wheelchair.
My condition means that I only have a tiny amount of energy. By sitting doing nothing for the majority of the day my condition doesn't deteriorate. I can then use this small amount of energy to get to the kitchen, bathroom and do basic self care using my microwave. By not dressing and undressing I have enough energy to be able to manage with ready meals if a carer comes in once a week to clean my flat and change my bedding. I do not like having a carer so I hired a cleaner who changes my bedding instead. They have washed pots and prepared a ready meal on particularly bad days also.
My condition of having a tiny amount of energy is not like normal tiredness. If I carry on doing activity when my energy is gone I get a chest pain, fluish symptoms, burning up feverishness, icy cold chills, mood swings. If I ignore this and carry on, it does long term physical damage. I know this because over 20 years of this illness I have ignored this and carried one, especially in the early stages. This is why I am now unable to function without the electric wheelchair and unable to do normal tasks such as what you can do. Each time I broke the limitations and carried on my disability increased until I was bedridden unable to speak or wipe over my body with a wet flannel. I was like this for 2 years. By having a very strict lifestyle of restraint from activity I am now at the point where IF I have an electric wheelchair, I can manage most self care activities. I am very proud of this. Being bedridden was absolute hell on earth. I could not watch TV with sound, listen to music, engage in conversation. I just had to stare at a wall for 2 years. Then I got a very tiny amount of energy and started to build. It took me 10 years before I no longer needed the commode. This is the speed at which my energy level is increasing. If I walked 200 metres now, I would be within 3 days with no capacity to speak or move from my bed. If I then rested in my bed for 3 days 3 weeks or 3 months without moving or speaking, my energy level would not increase I would still not be able to move or speak or toilet myself.
What I am saying to you is that this is a time of austerity and I wish to do my part. The way to minimise expenses is not to do what Alan **** did (the decision maker on the 31/12/20) But to fund my electric wheelchair and drop the daily living component. And understanding and evaluating the full evidence that I have used an electric wheelchair or been unable to function without a wheelchair (been unable to walk only tiny amounts without change and without fluctuation of any more than 0-10metres i.e. to get from 0 to 10 takes decades and to get from 10 to 0 takes one moment of recklessness) - to acknowledge my points for daily living are not zero but under the required amount and to award me Daily living component. Then to award me higher on mobility because the powerchair means I can do the daily living tasks. higher mobility, since there has been no change for 20 years in my mobility WITH A NOTE THAT MY INDEPENDENCE and abilities of daily living are due to me having an electric wheelchair. By doing this you will have succeeded in freeing up money that can then be sent to other people who are also seriously ill. I am sorry if this is not straightforward. But I want to achieve as much independence as I can. It makes me feel good to minimise the burden I cause to others. There is no point checking every 3 years..look at the costs this has made that could have been spent on caring for seriously ill people instead of the expenses of arguing every 3 years. I will ask for a tribunal. I have no choice. I cannot survive without my powerchair but I am telling you now I want to minimise costs regarding care. I want to be independent as far as possible. Therefore why do you not give me mobility higher for a longer period without the daily living component. Instead of my daily living component being confused every 3 years and possible repeated tribunals and you ending up with me back on medium daily living. I will need this electric wheelchair for at least 10 more years and probably for the rest of my life. I am telling you the most effective way for you to do this that I feel comfortable with. I also have questions about if I am said to be entitled to medium care..if I can send back the money that I do not use for care or opt out whilst holding onto the higher mobility component. I am also telling you that without this powerchair and being able to talk to you properly - without seeing you as someone who is not trying to destroy my health I cannot see a way to continue. I am NOT going to become a bedridden vegetable even though you plan to take action to turn me into that. If that happens I will do euthanasia & I will tell the entire world my story. I will not just euthanize but I will do it in front of a TV camera. There are paparazzi everywhere. I will travel in my electric wheelchair to where they are.
My ideal situation is a long term higher mobility with no daily living component. This would make me feel good. And to be able to talk to you and supported by you trying to achieve independence instead of feeling you are out to get me and sabotage me. I would like a real human to human non automated telephone conversation. The system you are part of is automated. You have to follow with automatic responses. I am a calm respectful non judgemental person. You are safe to call me without it being unpleasant for you, I promise. My phone number is ***** *********. I believe we should decide the best way forward together as a team.
I believe the decision did not properly take into account how my disability affects me.
I cannot cook a simple meal using a conventional cooker but is able to do so using a microwave.
This is because I cannot chop vegetables, peel them. I cannot stand for more than 60 seconds. I have a stool or seat in every room. I cannot wait for food to cook. So I go lie down and the food burns. My mother and neighbour can attest to this. It is not safe. WITHOUT an electric wheelchair I would need to have all kitchening equipment moved into my bedroom. Microwave, a large bin, paper plates cups etc, a small fridge and a large freezer. I would need to apply for grants to get a water source in my bedroom ie sink and tap. Or I would need a carer to prepare meals. I would not be able to get myself a drink.
WITH my electric wheelchair I can get to the kitchen and put a ready meal into the microwave. I can also get a drink
I need to use an aid or appliance to be able to wash or bathe.
This is because the categories inadequately explain. WITHOUT my electric wheelchair I would need a washing facility within my bedroom. To avoid expense and burden and carers I would resort to only washing once per week. This would mean that I only have to go to my bathroom once per week and could spend the rest of my time in the bedroom.
WITH my powerchair I can have a bath 2-3 times a week. I bathe because lying down is less strenuous than sitting up. It also suffuses my body with heat whereas a shower is a cold hot blast shock. When the water shoots out at the wrong temperature my whole body tenses & is held tense. I have already explained why I need to keep my body floppy and minimise physical strain.
I need to use an aid or appliance to be able to manage toilet needs or incontinence.
This is because WITHOUT my electric wheelchair I will not have enough energy to do basic tasks. So I will need a commode by my bed, because I will need to save energy so I have enough energy to survive and function. I will need 2 or 3 commode buckets so that I only have to move to the bathroom once every 2-3 days. I will shuffle along the floor to the bathroom once every 2-3 days or once a day if possible and pushing the bucket across the carpet, empty to bucket into the toilet myself. This is because I do not want carers. I hate having carers. I want to maintain my dignity.
WITH my electric wheelchair I can go to the toilet every time I need it.
I need either prompting to be able to dress, undress or determine appropriate circumstances for remaining clothed; or prompting or assistance to be able to select appropriate clothing.
This is because WITH my electric wheelchair I cannot dress more often than once every 2-3 days. I sleep in my day clothes. WITHOUT my electric wheelchair I would use a wet wipe under my arms and crotch area and change my clothes once a week. I would need my clothes to be next to my bed.
I do not want a carer around me telling me to put on a nightdress. I want to be independent & resources are short. it is not a problem for me to do it like this then carers can be sent to people who are like I used to be. Before the 2007 financial crash my council struggled to afford to give me carers.. So I am not going to demand they send carers to do what I see as a pointless and strenuous exercise. I don't want to be raising my arms twice a day, especially if I no longer have my powerchair.
I need communication support to be able to express or understand complex verbal information.
This is because WITHOUT my electric wheelchair I would need to save all my energy for movement. This is because I would need to be able to get to the kerb outside my house with a manual wheelchair and taxi. Taxis are expensive so without my electric wheelchair I would only be able to leave my house in an emergency e.g. hospital appointment. WITHOUT A MANUAL WHEELCHAIR I would only be able to leave my house for a life threatening situation. This is because your belief is leading to me having no funding for someone to push a manual wheelchair. My electric wheelchair is much cheaper than paying someone to push a manual wheelchair.
SPEAKING and LISTENING. WITHOUT my electric wheelchair I would be unable to communicate except in an emergency. This is because I would need to save the tiny amount of energy I have for movements that I previously did using my powerchair. I would not be able to speak except in an emergency because my daily allotted energy is so small. I need to choose if to use that energy for speaking or moving. Speaking is not essential. Therefore because your decision forces me to increase movement I need to save energy in other areas. Therefore I would not be ABLE to speak or listen to people speaking without overdoing things and causing long term damage. So WITHOUT my electric wheelchair I would only speak for 20-30 minutes per day about urgent matters. I would not have any pleasurable conversation. All my joy in life would be gone. I would be silent for the entire day. if people try to speak to me I would need to wear ear plugs and ask them to leave my bedroom. I would need an administrator or representative to speak on my behalf. This is expense to the government and charities that can be avoided by me having an electric wheelchair.
WITH powerchair I can communicate for up to 60 minutes if the other person does most of the work. 20minutes if I am doing all the work.
I need prompting to be able to read or understand complex written information.
This is because I would need people to read for me. WITHOUT my electric wheelchair I would need to use my tiny amount of energy for physical movement. My lifestyle would need to be to refrain from reading unless it is an emergency. WITH my electric wheelchair I have no problem reading. I can read for 10-15 minutes in one go
I cannot engage with other people due to such engagement causing either overwhelming psychological distress to the claimant; or the claimant to exhibit behaviour which would result in a substantial risk of harm to the claimant or another person.
This is because WITHOUT my wheelchair I have a very tiny amount of energy. if I engage with others I will not be able to complete the physical movements around my flat. The danger is that if I use my tiny amount of energy engaging with others I will do long term damage to myself and become once again unable to use even a flannel or wet wipe or get to my commode. The danger to OTHERS is that by my engaging and my disability increasing as a result, I will become a vegetable. This is a danger to the wellbeing of my mother & father, my sister. It is also a danger to other sick people as money that could of helped them is being spent on someone whose disability was increased and damage was done that could have been avoided by proper allocation of funding. I only need an electric wheelchair. Imagine the situation where for 20years I am bedridden, how much funding that will take.
WITH my powerchair I am able to go out daily & have a conversation of up to 1 hour especially if the other person does most of the talking as its less tiring that way.
I need prompting or assistance to be able to make complex budgeting decisions.
This is because WITHOUT my wheelchair I will not be able to do much once I have used my tiny amount of energy to move around. I will be bum shuffling along the floor as this is the most energy effective way to move and I can lie down at any point. Therefore I will need to ask someone else to do any complex self care administration. I will not have the strength to understand complicated matters. My cognitive capacity will reduce due to the exhaustion of the extra physical movement. Caring for budget often involves phoning automated systems waiting in queues. Without my powerchair I will be unable to do these tasks. I will understand reality but not be able to think due to exhaustion or be asked ANY energy consuming questions other than urgent ones. Dealing with budget involves answering many questions where the business already has the answers on record. Once I have said who I am and got through security I will be unable to continue speaking. This will be the same at a PIP assessment. I was able to speak to the assessor of this particular review & I am able to type this BECAUSE I have an electric wheelchair & so can save energy on physical movement. By using the electric wheelchair I can then communicate.
WITH my electric wheelchair I am able to budget and deal with complicated situations such as making appeals about benefits.
I cannot follow the route of a familiar journey without another person, an assistance dog or an orientation aid.
This is because I will not be able to do any journey without getting severely ill WITHOUT en electric or manual wheelchair. My only journey I would be able to complete without a wheelchair would be to call a taxi...walk very slowly to the kerb. Get in the taxi. Then when we reach the destination e.g. the hospital, without a wheelchair at the location I would have to sit down and ask any staff, doctors etc to come out as I wouldn't be able to walk a single step further...not with a stick not with someone holding my arm. Then I would get the taxi back and have to walk from the kerb to the front door. I would say from my front door to my kerb is around 20 metres> I could bum shuffle to my front door. then lie down. Then after I feel at my strongest then go to the kerb stopping once or twice to sit down.
This is why a motability car would make no difference. Because driving is too tiring and when I reach my destination...I can't leave the car without a wheelchair. I also cannot self propel in a manual wheelchair as this requires energy. There is no cheap option. I am either paying someone to push a manual or in an electric wheelchair.
WITH my electric wheelchair for the last 10 years I have been going out every day. I often zoom onto the bus into the wheelchair space and travel. I also travel sometimes by train and can provide documentation and evidence that I travelled in these ways using my powerchair..every day using buses sometimes for long periods. The train company makes a record each time they put out the ramp onto the train for me. I have not been on a bus without a wheelchair since 1997. With my powerchair I have spent a lot of time outside..buzzing around. Journeying. This is because I cannot bear being trapped in the house as I had so many years of that. Even staying in for one whole day puts me in a very dark place. I was a prisoner. For many years I was unable to get down stairs at my parents house. Then a stair lift was installed. I came downstairs & didn't recognise anything. These years of bedroom imprisonment have left scars. I cannot stay at home unable to go out because I do not have a wheelchair or cannot afford a taxi. This is a death sentence for me.
I cannot, either aided or unaided, (i) stand; or (ii) move more than 1 metre.
This is because WITHOUT my electric wheelchair, any physical movements I would do with my powerchair I will either have to stop doing them, ask the person to come to my bed (eg a GP or a nurse would have to do home visits) or ask for someone else to do it. This is because I only have a very tiny amount of energy. If I am forced to walk 200 or even 50+ metres I will very quickly be bedridden and no matter how long I rest I will not recover. I will be unable to walk 1 metre. This is the situation without powerchair. This is your model for my future and its outcome. I do not want to become bedridden so my life without a wheelchair would entail bringing everything I need right next to my bed. Setting up kitchen & bathroom facilities and commode. This would be to slow the deterioration of my health that will happen each time I am forced to overdo things and do not have a wheelchair to do them with.
WITH the powerchair I am able to do my shopping, go out daily, visit friends talk to people, wash myself brush my teeth, dress once every 2-3 days, put a meal in the microwave, use my kettle. I have reached the situation where I only need 1 or 2 hours help per week by following my plan of not dressing, eating ready meals and minimising physical movement. For example I would never do a task that involves holding ones arms in the air. This is what I mean by minimising physical movement. I always keep my body floppy to save energy. With my powerchair I can walk more than one metre but cannot walk 20 metres. I can do this once. I cannot walk 19 metres, sit on a wall then walk another 19 metres then repeat. This is because I only have a very tiny amount of energy. Once the energy is used, no matter how long I sit on the wall, I cannot continue. The energy takes several days to come back. If I use 100% of my energy it takes 2-3 days of bed rest for the symptoms to subside and the risk of long term damage to subside. Then the tiny amount of energy is back. I therefore follow my doctors advice which is to do pacing..to use 80% of my tiny amount of energy and save 20%. This is the medical advice given. If I do 80% the next day I wake up with the same tiny amount of energy I had the previous day. If I go over 100% I will wake up and find symptoms come with any kind of physical movement & that speaking causes symptoms..
Thank you for reconsidering the decision.
Yours sincerely
Michelle Wyatt
You mention using a power wheelchair a lot.As far as I know, most of the activities - such as going to the toilet, getting washed and dressed etc- don't consider actually getting to the bathroom etc. As Poppy said in an earlier post mobility and daily living are separate. If you say that you can communicate socially OK once you've got somewhere then you won't score points for this AFAIK.
Personally I wouldn't include the stuff about 'times of austerity' and what you need the money for - neither of these are relevant. If you qualify you will get PIP regardless of how rich or poor the government is!
I think you might be best reading through the PIP activities and descriptors and re-drafting.
Keep it relevant.
Leave out the power wheelchair stuff unless its relevant, maybe under 'Mobility'.
Good luck...
[ I don't know your condition so I apologise if you do need a wheelchair to help with reading, communicating, preparing food, bathing etc - it's just that I can't see it myself]
Ok lets take the example of a diabetic spooning sugar into their mouth.
I say I can only have 1 spoonful. PIP say I can have 10 spoonfuls. I say if I have 10 spoonfuls this will happen..............they say that is assertion & that I need to explain what happened the last time I had 10 spoonfuls. I am totally snookered as I have not had 10 spoonfuls since I got my diagnosis & medical advice. What do I do.
Then the assessment goes on to describe eating cake, eating candy, eating, toffee, eating chocolate and asks how much of each one I can eat. Then I try to guess because I havent been eating these things..again they explain that I must say what happened last time I ate a large amount of each one & how it affected me. What do I do? What is your advice?
For example, acknowledging that you have mobility difficulties, if you ignore actually getting to the kitchen out how would you cope? Can you cook if you sit on a chair (or have to sit in your wheelchair if it's easier)? Can you chop and prepare?
Same with going to the toilet - once you're there how can you manage??
Good luck..others will be able to advise further I'm sure...
IN A NUTSHELL
The reason why I can do most self care is because I dont walk. I only have a tiny amount of energy so if I use it to walk A) I will not get very far & B ) I will have no strength left to do self care tasks. If I walk more than 20 metres I will develop post exertional malaise.
Post-exertional malaise (PEM) refers to a worsening of ME/CFS symptoms after minimal physical or mental exertion, which can be delayed 24-72 hours or more. ... ME/CFS patients suffer from a post-exertional flu-like feeling, with brain fog,photophobia and other symptoms not usually reported after exertion.
For example, since this assessment outcome I have had to do more than usual. I have been writing more, typing more and phoning people. As a resuklt I cannot currently talk for more than 5 minutes without getting chest straining symptoms. I have had to cancel all my schedule of social activities because when I now talk to people I get the chest pain after a few minutes. The pain comes with movement, with exertion. It fades with rest. Right now typing this I have a chest pain . This is a physical pain in the liver area. I believe the liver is straining. I also feel exhaustion. This is because I have overdone things. Each day over the last few days the amount I can do before getting these symptoms has been reducing. It took me over 10 years to increase my abilites and now over 5 days they are reducing. even with minimising movement the symptoms are getting stronger with each day of typing and telephoning. Now the symptoms arise after 2-3 steps eg 1 metre walk. Before I overdid things, I could walk 6-8 metres in one go without symptoms. I could do this 4-5 times per day. Now I get symptoms after walking 1 metre. if I rest properly and stop having to fight..my ability will return to 6-8 metres I HOPE. But if I carry on then they symptoms will comes after smaller and smaller amounts untill I get a chest pain just from sitting up or turning over in bed or saying 2-3 sentences very gently. When I overexert I experience fluish symptoms upon waking. the 1st stage is the chest pain which I have now. If I dont stop and rest the fluish symptoms will come. I do not want to carry on overdoing things at this point so I can explain to you an example of me overdoing things and what happened. I cannot physically damage myself every 3 years so you have a real life example. It is dangerous long term damage if you carry on and develop the full blown fluish post exertional malaise.
Thanks Poppy It just seems wrong that I cant just answer the questions and have to figure out what the assessor wants to hear and say that. Yes I have looked at it and I will make an answer now from the document but it feels like you have to have a degree to get a wheelchair nowadays
Unfortunately, Poppy, this I think is where people with ME (pwME) are struggling with the current system - and it's a subject I've been meaning to bring up separately for a while. They have such limited energy reserves that they are pretty much unable to push outside their "energy envelope" without doing themselves very severe harm - like making themselves bedridden, if they aren't already. It's called pacing: keeping within your limitations, and is virtually the only thing which seems to bring about an improvement in the condition. So really no way is anyone with ME going to deliberately overdo things just so they can provide anecdotal evidence about what happened the last time they did it, any more than someone with, say, field of vision problems is going to veer off a path and fall down a steep slope just so they can tell the DWP what happened when they did
Certainly, lots of people claim PIP without problems, but pwME tend not to be among them, in my experience, unless they have other limiting conditions as well which qualify them. Hence the frustration.
Additional couple of comments to @kandarohi: unless things have changed since the last set of guidance came out:
- "getting around" is deemed as being outdoors only: there's nothing about whether you can move around inside your home
- putting a ready meal in the microwave doesn't correspond to the DWP's definition of meal preparation, which is using fresh ingredients, chopping and cooking etc.
Obviously someone do correct me if things have changed.
1 - you assert you take 1 spoon of sugar. It is an assertion and DWP don’t need to counter with anything. They can reject it as is because you haven’t provided an example of what happens when you do and your evidence is judged on whether it’s consistent and contains no internal contradictions. A diabetic is unlikely to spoon a whole spoon of sugar in at once so that’s the end of that assertion really.
2 - you can evidence it by describing why you only take one; who told you the risks if you were to take the equivalent of more; written letter to confirm that from said medical professional; a detailed description of what happened the last time you consumed more than that amount prior to you getting the medical advice it was bad for you.