Hello whoever is reading this
We have done this blog to help some of you out there who are having trouble accessing services for yourself or others.
I will start with a couple of simple things & if I get any interest I will try to expand on the issues
If someone is disabled, they are entitled to a community care assessment from social services by right, if have problems quote the Chronically Sick & Disabled persons Act 1970
In certain circumstances the care may be met by the NHS through continuing care, this is a complex area so seek advice, or if someone has been detained under certain mental health legislation then they also may be entitled to help from the NHS at no cost, agin seek advice
Make sure also they are registered as disabled with social services,(they have a duty to keep a register) I have just won a victory in this area,with a local authority, that was not doing this it confirms person has health problems, but is also useful in accessing other help but, also can get zero rating from VAT for certain equipment & services, saving money, (saved on this computer because I need voice recognition software on this computer & mine at work)
What about a blue badge you & or may the cared for may be entitled to one of them, obtained through social services
Has someone claimed Attendance Allowance or Disablity Living Allowance for the person who needs care or in fact for the carer if they have care needs themselves
Re carers again you are entitled to an assessment by social services as a right if the person you are looking after is disabled.
For information about all these issues, look at the following, on the net
Age Concern for their range of advice & fact sheets
Disability Alliance & obtain their Disability Rights Handbook
Princess Royal Trust For Carers
Counsel & Care a charity that have comprehensive fact sheets on your rights, plus a very good advice service
There is a book by a man called Michael Mandlestam Community Care Practice & The Law 3rd Edition, that although heavy reading tells you in detail what your rights are, if you Google his name there is some other stuff out there by him
I hope this is helpful
Monday 3 December 2007
Thursday 11 October 2007
A beginners Guide To Claiming Disability Living Allowance or Attendance Allowance For People With ME/CFS
Before you actually start your claim for the benefit you need to make certain preparation to improve your chances.
If possible obtain a copy of the Disability Rights Handbook, from Disability Alliance their phone number is 020 7247 8776, the book costs £20 but is reduced for people on benefits. I believe there is a copy kept in the ME group library, then read the section regarding claiming disability living allowance or attendance allowance.
Speak to your GP and see if they will support your application, remind them of the symptoms you have and the effect they have on your life.
Have a think about what is actually wrong with you, yes we all know you have ME, but do you have other underlying physical problems, because it seems that lots of us, have spinal problems, arthritis, repetitive strain injury as well as other illnesses diagnosed or not.
The reasons for this is that the other conditions may actually improve your chances of getting benefit, although this may not seem fair, if it improves your chances of a successful claim why not go along this route also this is because the adjudication officer's are more likely to accept a diagnosis of arthritis as a reason sadly than they are for ME, this is despite the recent guidance in their own handbook http://www.dwp.gov.uk/medical/med_conditions/major/cfs/
The next thing you need to do, is to keep a diary for a least a week, stating all the problems you have had in the course of daily living whether it be for attention or supervision, also all the symptoms and the severity of them, this is for you to submit with your application when you make it, if you are unable to do this yourself, then ask your carer to do this for you.
If you have seen any consultant, physiotherapist or any other health professional request a report from them explaining what it is going to be used for, if you have not already been seen by anybody, this could be a good time to visit people such as Dr Wright, Dr Perrin, Gail Sumner, or see if you can be referred for assessment by a health professional, at which point again, you need to ask for report about your diagnosis and how it affects your life.
The other important thing that you need to do, is to contact social services and request a multidisciplinary community care assessment, when you contact them, do not explain why you want them to carry this out, just state that you are disabled, and your understanding is that it is illegal for them not to carry this out. When they have completed the assessment they should supply you with a care plan which explains what your needs, you can submit this as evidence with your form.
Your carer is entitled to a carers assessment as well, and again it is illegal for social services to refuse this, so in the same way, if appropriate you can submit this to reinforce the help that you require.
It may or may not be appropriate to submit evidence from your employer to support your claim, the dilemma may be that the benefits agency, considers because you are fit for work, you do not meet the criteria for the care component, so seek expert advice before going down this path.
Now you need to ring up and request an application form, the best number to ring is 0800 88 22 00 this is because, as soon as you ring up a form will be stamped and this will be the start of your claim, however long it then takes.
Now comes the hard bit, the questions on the form, ask about all the negative needs you have in daily living and the only way to obtain benefit is to answer honestly, explaining just how bad it is in coping with your illness and what your needs in relation to attention and supervision.
When I was filling my form in, I found talking about my bodily functions and the help that I needed from my carer really demoralising and a reminder of how difficult I was finding it to cope with life, in particular because I was trying to retain my independence.
For this reason it is well worth while getting somebody independent who is competent in filling in forms for people with ME to assist, ideally the carer should also be there, because often we are unrealistic about our abilities, whereas the carer sees as when we are at our worst and can therefore provide a more realistic view of what our needs for carer and supervision are.
Please remember that this form can take between two and three hours to complete which can be quite tiring if it takes less than two hours then something has been missed out so check the form again to make sure everything is being covered. If need be do it in more than one session
Now to the actual form, at present there are two versions of the form, so it is a little bit hard to give other than general advice about the actual layout of the form, when you look at the form it will have tick boxes, and small boxes in which to give your answers, in the little boxes put “see attached notes” and rather than try to squeeze everything in the boxes, either write or type it up in detail explaining how difficult and complicated it is to carry out the tasks that they are questioning you about.
You need to start off explaining how difficult it is from first waking up, getting out of bed, getting washed, fed and then the various difficulties you have throughout the day.
The first part of the form, looks at your mobility problems, do not take for granted, that people will understand the difficulties that you have because of the fatigue, poor coordination and any other reasons that stop you from walking or restrict your ability to walk, also it is important to mention about how much pain you are in and where the pain is.
One of the things to consider is that often we are unrealistic about our ability to walk and try to do too much, which often leads to a deterioration in our health, prevents us from making further progress, all we have other difficulties such as going light headed, stumbles and falls.
Therefore it is important to accept, and state in the form that because we are unrealistic in our expectations when walking that we have a need for supervision and attention, which can lead to a significant deterioration in our health, whether we need any walking aids to assist us.
Now onto the care component, it is important not to take anything for granted about others understanding what your problems are, nor should embarrassment stop you from recording the care & attention that you need.
As I said earlier, you need to start from first waking up and getting up out of bed, that's making the presumption that you are able to get up out of bed, if not you need to explain what the difficulties are, whether it is fatigue pain or other reasons, if you have problems getting out of bed then describe what these are what assistance you require.
Next you need to explain about the difficulties you have in the bathroom, whether you need to sit down to wash, can you hold the soap or flannel do you get breathless with the exertion of washing yourself, can you try yourself partially or over, if you have a bath can you get in and out easily, do you have handrails to make it easier, do you get breathless because of the steam, can you wash your hair is it painful to do this or to bend down to do the lower part of your body.
And the days that you physically do not feel able to get up and have a wash or a bath, explain what happens on those days and why, do you put yourself at risk in the bathroom trying to be independent if so state this.
Now for one of the most difficult parts in completing the form, toileting, can you reach the toilet when you need it, if you can sit down, can you then get up without assistance, do you have aids to assist you with this, can you clean yourself after using the toilet, can you were just your clothing before and after you have used the toilet, is it painful for you to use the toilet, can you use commode or urine bottle, if so are you able to empty it, if not what happens.
Do you have accidents, are there times when you are not able to get to the toilet & soil yourself, if so can you clean yourself afterwards or do you need help from others, for all of us these sort of questions are difficult, but actually give an indication of how difficult daily living is.
What about getting dressed, are the days you are too tired to get dressed, how often does this occur, do you find it difficult or painful to dress, it is to do with your top half, bottom or all, why is this, explain in detail, can you cope with buttons, bra straps, shoelaces and zips, are there times that you need reminding to dress appropriately.
How about getting in and out of your chair, is it painful to sit down or get up from your chair, is it painful when you are sat in the chair, do you have a special chair to help you cope, do you need assistance to get up out of the chair from others, are you unsteady when you try to stand up, do you stumble as you tried to move away from the chair, do you hang on to the furniture to keep you steady.
What about the stairs can you cope with them, do you hang on to the banisters when going up or down, explain why, do you have to stop for a rest, is it painful or do you get breathless, you need to explain all this on the form.
Can you make yourself a meal, this means every day, proper 2 meat & vegetable meal, using get a proper cooker with an oven, I do able to think clearly enough to plan the meal, I you physically able to prepare the vegetables and meat, is it painful to chop or peel the vegetables, can you safely reached down to use the oven, can you safely lift hot heavy pans, what happens if you spill something on the floor, can you pick it up, in the past have you had any accidents in the kitchen, what was the outcome, can you open tin cans and bottle caps, all of this is important, because if you fail the cooking test, you will get the lower rate care of DLA even if not granted the full benefit so please explain in detail.
Because we people with ME are unrealistic about our ability to carry out normal daily living tasks, we tend to put ourselves at risk so therefore need supervision from others to make sure we are safe, it is worth time discussing that with carer or others and documenting in what shape and form this occurs to show the adjudication officer the complexity of our needs.
It is very important to document on the form any type of treatment that we are receiving, since when and how often, also what medication we are on, but do not forget to mention, if there are problems, opening bottles, foil containers, remembering when or what dosage to take, and what has happened where mistakes had been made.
You should also explain about the problems at night-time, getting in and out of bed, finding a comfortable position, what happens if you need to go to the toilet, or take medication, because we have night sweats, nightmares, as well as other problems in bed, you need to explain these and the effect they have, and why you need attention and supervision at night.
I may have missed certain issues out, but I feel there is more than enough to be going on with, PLEASE DO NOT UNDERSTATE the level of help you require, even if you live alone or spend much of your time on your own because your partner goes out to work, it does not mean you do not require attention or supervision, these are the most im[portent words you can use & are what the adjudication officer needs to see spelled out.
I cannot guarantee if you do the form & include all of this information etc, that it will be successful, because unfortunately there does appear to be an element of lottery about any claim for DLA, but it will improve your chances & will stand you in good stead if you appeal or go to tribunal.
I forgot to say it is very important to keep a copy of the form & any extra paperwork you submit, and if they send a doctor out to see you make sure you have someone who understands your needs with you & do not try to say you can achieve things that you cannot, plus there is no harm in refreshing your memory by consulting your form before the visit.
If the doctor behaves unethically when they visit or put you under pressure, refuse to continue & straight away make a complaint to DLA about their behaviour.
If sadly you are turned down the first thing to do is ask for copies of the paperwork they used when deciding your claim & if there are errors report them immediately, if they have told lies again make a formal complaint because if you do not take action immediately it is much harder to fight your case at a later date.
All the best in your claim sorry this has been so long, if anybody has other comments or suggestions please let me know, I would welcome constructive critism
If possible obtain a copy of the Disability Rights Handbook, from Disability Alliance their phone number is 020 7247 8776, the book costs £20 but is reduced for people on benefits. I believe there is a copy kept in the ME group library, then read the section regarding claiming disability living allowance or attendance allowance.
Speak to your GP and see if they will support your application, remind them of the symptoms you have and the effect they have on your life.
Have a think about what is actually wrong with you, yes we all know you have ME, but do you have other underlying physical problems, because it seems that lots of us, have spinal problems, arthritis, repetitive strain injury as well as other illnesses diagnosed or not.
The reasons for this is that the other conditions may actually improve your chances of getting benefit, although this may not seem fair, if it improves your chances of a successful claim why not go along this route also this is because the adjudication officer's are more likely to accept a diagnosis of arthritis as a reason sadly than they are for ME, this is despite the recent guidance in their own handbook http://www.dwp.gov.uk/medical/med_conditions/major/cfs/
The next thing you need to do, is to keep a diary for a least a week, stating all the problems you have had in the course of daily living whether it be for attention or supervision, also all the symptoms and the severity of them, this is for you to submit with your application when you make it, if you are unable to do this yourself, then ask your carer to do this for you.
If you have seen any consultant, physiotherapist or any other health professional request a report from them explaining what it is going to be used for, if you have not already been seen by anybody, this could be a good time to visit people such as Dr Wright, Dr Perrin, Gail Sumner, or see if you can be referred for assessment by a health professional, at which point again, you need to ask for report about your diagnosis and how it affects your life.
The other important thing that you need to do, is to contact social services and request a multidisciplinary community care assessment, when you contact them, do not explain why you want them to carry this out, just state that you are disabled, and your understanding is that it is illegal for them not to carry this out. When they have completed the assessment they should supply you with a care plan which explains what your needs, you can submit this as evidence with your form.
Your carer is entitled to a carers assessment as well, and again it is illegal for social services to refuse this, so in the same way, if appropriate you can submit this to reinforce the help that you require.
It may or may not be appropriate to submit evidence from your employer to support your claim, the dilemma may be that the benefits agency, considers because you are fit for work, you do not meet the criteria for the care component, so seek expert advice before going down this path.
Now you need to ring up and request an application form, the best number to ring is 0800 88 22 00 this is because, as soon as you ring up a form will be stamped and this will be the start of your claim, however long it then takes.
Now comes the hard bit, the questions on the form, ask about all the negative needs you have in daily living and the only way to obtain benefit is to answer honestly, explaining just how bad it is in coping with your illness and what your needs in relation to attention and supervision.
When I was filling my form in, I found talking about my bodily functions and the help that I needed from my carer really demoralising and a reminder of how difficult I was finding it to cope with life, in particular because I was trying to retain my independence.
For this reason it is well worth while getting somebody independent who is competent in filling in forms for people with ME to assist, ideally the carer should also be there, because often we are unrealistic about our abilities, whereas the carer sees as when we are at our worst and can therefore provide a more realistic view of what our needs for carer and supervision are.
Please remember that this form can take between two and three hours to complete which can be quite tiring if it takes less than two hours then something has been missed out so check the form again to make sure everything is being covered. If need be do it in more than one session
Now to the actual form, at present there are two versions of the form, so it is a little bit hard to give other than general advice about the actual layout of the form, when you look at the form it will have tick boxes, and small boxes in which to give your answers, in the little boxes put “see attached notes” and rather than try to squeeze everything in the boxes, either write or type it up in detail explaining how difficult and complicated it is to carry out the tasks that they are questioning you about.
You need to start off explaining how difficult it is from first waking up, getting out of bed, getting washed, fed and then the various difficulties you have throughout the day.
The first part of the form, looks at your mobility problems, do not take for granted, that people will understand the difficulties that you have because of the fatigue, poor coordination and any other reasons that stop you from walking or restrict your ability to walk, also it is important to mention about how much pain you are in and where the pain is.
One of the things to consider is that often we are unrealistic about our ability to walk and try to do too much, which often leads to a deterioration in our health, prevents us from making further progress, all we have other difficulties such as going light headed, stumbles and falls.
Therefore it is important to accept, and state in the form that because we are unrealistic in our expectations when walking that we have a need for supervision and attention, which can lead to a significant deterioration in our health, whether we need any walking aids to assist us.
Now onto the care component, it is important not to take anything for granted about others understanding what your problems are, nor should embarrassment stop you from recording the care & attention that you need.
As I said earlier, you need to start from first waking up and getting up out of bed, that's making the presumption that you are able to get up out of bed, if not you need to explain what the difficulties are, whether it is fatigue pain or other reasons, if you have problems getting out of bed then describe what these are what assistance you require.
Next you need to explain about the difficulties you have in the bathroom, whether you need to sit down to wash, can you hold the soap or flannel do you get breathless with the exertion of washing yourself, can you try yourself partially or over, if you have a bath can you get in and out easily, do you have handrails to make it easier, do you get breathless because of the steam, can you wash your hair is it painful to do this or to bend down to do the lower part of your body.
And the days that you physically do not feel able to get up and have a wash or a bath, explain what happens on those days and why, do you put yourself at risk in the bathroom trying to be independent if so state this.
Now for one of the most difficult parts in completing the form, toileting, can you reach the toilet when you need it, if you can sit down, can you then get up without assistance, do you have aids to assist you with this, can you clean yourself after using the toilet, can you were just your clothing before and after you have used the toilet, is it painful for you to use the toilet, can you use commode or urine bottle, if so are you able to empty it, if not what happens.
Do you have accidents, are there times when you are not able to get to the toilet & soil yourself, if so can you clean yourself afterwards or do you need help from others, for all of us these sort of questions are difficult, but actually give an indication of how difficult daily living is.
What about getting dressed, are the days you are too tired to get dressed, how often does this occur, do you find it difficult or painful to dress, it is to do with your top half, bottom or all, why is this, explain in detail, can you cope with buttons, bra straps, shoelaces and zips, are there times that you need reminding to dress appropriately.
How about getting in and out of your chair, is it painful to sit down or get up from your chair, is it painful when you are sat in the chair, do you have a special chair to help you cope, do you need assistance to get up out of the chair from others, are you unsteady when you try to stand up, do you stumble as you tried to move away from the chair, do you hang on to the furniture to keep you steady.
What about the stairs can you cope with them, do you hang on to the banisters when going up or down, explain why, do you have to stop for a rest, is it painful or do you get breathless, you need to explain all this on the form.
Can you make yourself a meal, this means every day, proper 2 meat & vegetable meal, using get a proper cooker with an oven, I do able to think clearly enough to plan the meal, I you physically able to prepare the vegetables and meat, is it painful to chop or peel the vegetables, can you safely reached down to use the oven, can you safely lift hot heavy pans, what happens if you spill something on the floor, can you pick it up, in the past have you had any accidents in the kitchen, what was the outcome, can you open tin cans and bottle caps, all of this is important, because if you fail the cooking test, you will get the lower rate care of DLA even if not granted the full benefit so please explain in detail.
Because we people with ME are unrealistic about our ability to carry out normal daily living tasks, we tend to put ourselves at risk so therefore need supervision from others to make sure we are safe, it is worth time discussing that with carer or others and documenting in what shape and form this occurs to show the adjudication officer the complexity of our needs.
It is very important to document on the form any type of treatment that we are receiving, since when and how often, also what medication we are on, but do not forget to mention, if there are problems, opening bottles, foil containers, remembering when or what dosage to take, and what has happened where mistakes had been made.
You should also explain about the problems at night-time, getting in and out of bed, finding a comfortable position, what happens if you need to go to the toilet, or take medication, because we have night sweats, nightmares, as well as other problems in bed, you need to explain these and the effect they have, and why you need attention and supervision at night.
I may have missed certain issues out, but I feel there is more than enough to be going on with, PLEASE DO NOT UNDERSTATE the level of help you require, even if you live alone or spend much of your time on your own because your partner goes out to work, it does not mean you do not require attention or supervision, these are the most im[portent words you can use & are what the adjudication officer needs to see spelled out.
I cannot guarantee if you do the form & include all of this information etc, that it will be successful, because unfortunately there does appear to be an element of lottery about any claim for DLA, but it will improve your chances & will stand you in good stead if you appeal or go to tribunal.
I forgot to say it is very important to keep a copy of the form & any extra paperwork you submit, and if they send a doctor out to see you make sure you have someone who understands your needs with you & do not try to say you can achieve things that you cannot, plus there is no harm in refreshing your memory by consulting your form before the visit.
If the doctor behaves unethically when they visit or put you under pressure, refuse to continue & straight away make a complaint to DLA about their behaviour.
If sadly you are turned down the first thing to do is ask for copies of the paperwork they used when deciding your claim & if there are errors report them immediately, if they have told lies again make a formal complaint because if you do not take action immediately it is much harder to fight your case at a later date.
All the best in your claim sorry this has been so long, if anybody has other comments or suggestions please let me know, I would welcome constructive critism
A Short Guide to Panic Attacks
Panic Attacks
Hello my name is Andy O’Hara, I used to suffer from Panic Attacks. I am one of the founder members of Panic Stations Self Help Group (PSSHG) based in Bury Manchester England. PSSHG was formed to help people who suffer from Panic attacks by providing a helpline and a meeting every 1st Monday of each month.
What is a panic attack? Basically it is a mental health condition caused from the bodies’ natural response to Fight or Flight, fight or flight goes back to the cavemen days where you were in a circumstance of being faced with two choices, the chance to fight or flight (runway) example being faced with a sabre toothed tiger!! Do you fight the beast to survive or do you run away.
Modern day example would be crossing a main road, do you stay there and try to stop the cars or do you run away to avoid the cars. Whether you are ready to fight or flight the body gets ready by increasing the blood supply to the vital organs to survive which in turn increases the heart rate and adrenalin flows, the breathing shallows to preserve oxygen and basically the body shuts down all un needed components.
In both the above examples after you have made the choice of staying or running the body settles back to normal. In a person with panic attacks the condition is permanently switched on and you are facing even the smallest situation with the fight or flight mechanism. Unless treated with medical help the condition becomes unbearable.
In all the time I’ve been involved with panic attacks no one has ever died from one. There is a light at the end of the tunnel and you can pull out of the situation in only a few months. PSSHG exist to help people who suffer by meeting with people with similar condition as yourself and by the use of a small library and speakers you have a chance to come out of the problem. Knowledge can be a great healer. I hope to enlighten you further in the next issue. See you soon. For help contact himnher51@hotmail.co.uk
Andy
Hello my name is Andy O’Hara, I used to suffer from Panic Attacks. I am one of the founder members of Panic Stations Self Help Group (PSSHG) based in Bury Manchester England. PSSHG was formed to help people who suffer from Panic attacks by providing a helpline and a meeting every 1st Monday of each month.
What is a panic attack? Basically it is a mental health condition caused from the bodies’ natural response to Fight or Flight, fight or flight goes back to the cavemen days where you were in a circumstance of being faced with two choices, the chance to fight or flight (runway) example being faced with a sabre toothed tiger!! Do you fight the beast to survive or do you run away.
Modern day example would be crossing a main road, do you stay there and try to stop the cars or do you run away to avoid the cars. Whether you are ready to fight or flight the body gets ready by increasing the blood supply to the vital organs to survive which in turn increases the heart rate and adrenalin flows, the breathing shallows to preserve oxygen and basically the body shuts down all un needed components.
In both the above examples after you have made the choice of staying or running the body settles back to normal. In a person with panic attacks the condition is permanently switched on and you are facing even the smallest situation with the fight or flight mechanism. Unless treated with medical help the condition becomes unbearable.
In all the time I’ve been involved with panic attacks no one has ever died from one. There is a light at the end of the tunnel and you can pull out of the situation in only a few months. PSSHG exist to help people who suffer by meeting with people with similar condition as yourself and by the use of a small library and speakers you have a chance to come out of the problem. Knowledge can be a great healer. I hope to enlighten you further in the next issue. See you soon. For help contact himnher51@hotmail.co.uk
Andy
My Thoughts About ME
Hello Everybody
I have read other comments & hope that my thoughts may help some
others who have ME, having had ME for about 17 years & actually improved over the
years, but not fully recovered
Firstly try to find a sympathetic GP who has some interest & or
insight into ME, I have learnt along with my GP, remember you can change GPs.
Accept that your life is going to change often drastically, but that
ME will not kill you.
Explore if you have other co-existing conditions that are treatable,
I discovered as others have that I have arthritis of the neck & spine
as well as RSI in my right hand & arm. Certain exercise & massage
help to relieve the pain to do with the arthritis, the RSI I feel is
made worse by using the computer so much, the new answer is
technology & voice recognition. What a relief it was to find there
were other answers, to the pain & distress I was experianceing.
Therefore this takes away some of the stress & pain that I related
inappropriately to ME
Try to find some way to develop a more positive attitude, mine was to
laugh at myself & the stupid things that I did & do even now, rather
than withdraw even more, leading into greater depression
Be open with people about the condition & the effects it has on me,
such as the fact that I need frequent breaks to rest & sleep even in
my own home when we had visitors & that sometimes I cannot come out
to play however much I want to.
To try to accept I cannot live life in the way I once did, setting
myself impossible targets that others would never of expected in the
first place of me.
To accept I have a disability, but then to obtain help to cope from
all sorts of sources of help such as
Register with social services as disabled
Obtain a Blue Badge
Apply for a concessionary bus pass or taxi vouchers
Explore Shopmobility schemes
If employed apply to Access to Work for assistance as soon as possible
Claim Disability Living Allowance, Attendance Allowance & any other
benefits, but ideally let a professional assist with the filling in
of the form & the gathering of information to support the claim
Ask for a Community Care assessment from social services, because you
are disabled & a Carers assessment for anyone who provides care to
you, don't tell social services initially what help you need, that's their job &
you are entitled to the assessment by law.
Ask for an assessment by an occupational therapist or contact
Disabled Living Service in Manchester to see what help is available
in practical terms, such as bottle openers, chairs, bath aids ( don't
go out & spend lots of money when you may be entitled to these free
of charge)
Check out with others what sorts of treatments seem to work, beware
of expensive ones that nobody seems to improve from, or nobody else
has heard of.
The biggy is try to PACE yourself & set realistic limits on what you
can do, yes you will have good days & sometimes get away with over
exertion, but if you have a relapse through bloody mindedness how
does that help how you feel ( boy do I know this one)
I found that a support network of people who I could ring & chat to
even if I could not get out helped with the isolation, but also who
felt they could ring me for any reason made me feel valued.
Remember that you are still a person in your own right & not a
victim, & are entitled to opinions & views about your life & society
as well as the things that are important to you, despite the fact
sometimes stringing a couple of sentences together may be difficult
to do
I was reminded the other week that most of us did have a
career & life before ME so we still have things to offer to our
friends family work & society, although we have to sometimes pick
when & where.
If you are newly diagnosed or suspect you may have ME, symptoms these may include flu like symptoms,(sore throat, fever, sickness, dizziness, exaustion, aches)any or all
Obviously these are only some of my thoughts & may not be appropriate
for others or maybe will provoke discussion, but at the same time I
hope may ring a bell & help some along the path of coping with ME.
Guess what my back is now aching so will
close but be interested in peoples comments.
I have read other comments & hope that my thoughts may help some
others who have ME, having had ME for about 17 years & actually improved over the
years, but not fully recovered
Firstly try to find a sympathetic GP who has some interest & or
insight into ME, I have learnt along with my GP, remember you can change GPs.
Accept that your life is going to change often drastically, but that
ME will not kill you.
Explore if you have other co-existing conditions that are treatable,
I discovered as others have that I have arthritis of the neck & spine
as well as RSI in my right hand & arm. Certain exercise & massage
help to relieve the pain to do with the arthritis, the RSI I feel is
made worse by using the computer so much, the new answer is
technology & voice recognition. What a relief it was to find there
were other answers, to the pain & distress I was experianceing.
Therefore this takes away some of the stress & pain that I related
inappropriately to ME
Try to find some way to develop a more positive attitude, mine was to
laugh at myself & the stupid things that I did & do even now, rather
than withdraw even more, leading into greater depression
Be open with people about the condition & the effects it has on me,
such as the fact that I need frequent breaks to rest & sleep even in
my own home when we had visitors & that sometimes I cannot come out
to play however much I want to.
To try to accept I cannot live life in the way I once did, setting
myself impossible targets that others would never of expected in the
first place of me.
To accept I have a disability, but then to obtain help to cope from
all sorts of sources of help such as
Register with social services as disabled
Obtain a Blue Badge
Apply for a concessionary bus pass or taxi vouchers
Explore Shopmobility schemes
If employed apply to Access to Work for assistance as soon as possible
Claim Disability Living Allowance, Attendance Allowance & any other
benefits, but ideally let a professional assist with the filling in
of the form & the gathering of information to support the claim
Ask for a Community Care assessment from social services, because you
are disabled & a Carers assessment for anyone who provides care to
you, don't tell social services initially what help you need, that's their job &
you are entitled to the assessment by law.
Ask for an assessment by an occupational therapist or contact
Disabled Living Service in Manchester to see what help is available
in practical terms, such as bottle openers, chairs, bath aids ( don't
go out & spend lots of money when you may be entitled to these free
of charge)
Check out with others what sorts of treatments seem to work, beware
of expensive ones that nobody seems to improve from, or nobody else
has heard of.
The biggy is try to PACE yourself & set realistic limits on what you
can do, yes you will have good days & sometimes get away with over
exertion, but if you have a relapse through bloody mindedness how
does that help how you feel ( boy do I know this one)
I found that a support network of people who I could ring & chat to
even if I could not get out helped with the isolation, but also who
felt they could ring me for any reason made me feel valued.
Remember that you are still a person in your own right & not a
victim, & are entitled to opinions & views about your life & society
as well as the things that are important to you, despite the fact
sometimes stringing a couple of sentences together may be difficult
to do
I was reminded the other week that most of us did have a
career & life before ME so we still have things to offer to our
friends family work & society, although we have to sometimes pick
when & where.
If you are newly diagnosed or suspect you may have ME, symptoms these may include flu like symptoms,(sore throat, fever, sickness, dizziness, exaustion, aches)any or all
Obviously these are only some of my thoughts & may not be appropriate
for others or maybe will provoke discussion, but at the same time I
hope may ring a bell & help some along the path of coping with ME.
Guess what my back is now aching so will
close but be interested in peoples comments.
Monday 26 February 2007
Batteries for Scooters & Wheelchairs What to Look For
When people by an electric scooter or an electric wheelchair, they often get the impression that their vehicle will cover longer distances on one charge than turns out to be the case. There are a number of factors which may be the cause of this.
The figures given by the manufacturers are arrived after the vehicle has been tested under ideal circumstances. It’s necessary to bear in mind, however, that you’re highly unlikely to be using it under ideal circumstances.
The Batteries
Batteries need to have a sufficient capacity rating for the vehicle they’re powering.
The condition of the batteries limits the distance the scooter or wheelchair covers. All the cells of the battery must be fully functional to get good performance, and they need to be charged up a few times before they reach their optimum performance. Ambient temperature affects how well batteries perform; the colder the weather, the less efficiently they work.
The Vehicle
The condition of the vehicle is important, too. To get consistent maximum distances out of it, the scooter must receive regular maintenance so that it’s always in tip top shape. A brake that is on when it should be off is clearly going to run down the batteries more quickly than usual. This can happen without it becoming obvious, since a partially applied brake won’t necessarily be all that noticeable. The wheel bearings should run freely, too.
The Terrain
The nature of the terrain over which scooters and wheelchairs are driven can reduce the distance they’ll put behind them on one charge. Rough ground in the form of cobble stones, soft ground the vehicle sinks in to or uphill gradients take more out of the batteries that might otherwise be the case. On the other hand, driving a vehicle over descending ground will drain the batteries less, enabling a longer distance between charges. Most people, however, will be hoping to make the return journey!
The size of the wheels can make a difference to battery performance in so far as that larger wheels that ride on the top of ridges in the terrain surface make more efficient use of the battery power.
The Load
Mobility scooters and wheelchairs have weight limitations which the owner will find in the documentation that comes with the machine. It seems often (if not always) to be the case that vehicles won’t cover the maximum distance stated at the same time they’re carrying the maximum weight. Other factors being equal, the less weight the vehicle is carrying, the further it should go on one charge. It’s wise to obtain an electric scooter or wheelchair built to bear the weight that’s going be put on it.
Experience
The authors of this piece have had experience of organising charity fund raising events that consisted of scooter and wheelchair runs of 20 kilometres. In each instance, half a dozen scooters were involved, and in ttwo of them an electric wheelchair too. Roughly two thirds of the scooters required a change of batteries, another third ‘limped’ home and the other third could have continued further.
The scooters were of various ages, and so were the batteries. They were all in good condition, though. The wind direction was sometimes against, sometimes for. The routes were relatively flat.
The advertised distance coverable by the scooters on one battery charge is 40 kilometres. The scooters were of the same make, and mostly the same model.
Tuesday 28 November 2006
What to consider when buying an electric wheelchair or scooter
Thinking of buying a scooter
I thought it may help people who are considering buying a new or used scooter or electric wheelchair to provide some points to consider before proceeding with your purchase.
Have you ever driven a scooter or electric wheelchair before, if not why not join one of the Shopmobility schemes if you meet their membership conditions. Try using different types for a while to see which suits you best if at all. You could also contact Disability living Service to see if they can advise on suitable vehicles for your needs
Are you more comfortable with either a 3 or 4 wheel scooter, or if an electric wheelchair is better can you operate it yourself or do you need someone else to operate the controls
What do you want to use it for
If you want to get to the local shops are there sufficient dropped kerbs, how dangerous are the roads to cross, why not try it in a manual chair or if you are able, try walking & see if you would be safe what obstacles are there to negotiate
What about trips out to towns & cities, it matters how you are going to reach your destination, not all public transport is accessible, if travelling in your own or a family car how will the vehicle fit in, will it need taking apart., if so because of the size & weight is there someone with the ability & strength to place it in the car then reassemble it at the other end if the car big enough
Where are you going to store it is there an accessible garage or shed where it can be kept, if not will there be problems trying to find a suitable place in the house without causing an obstruction.
Where are you going to buy it from, beware of companies that are only interested in making a sale at a great profit, make sure you check out various providers & check the different prices, ask friends where they bought theirs, were they happy with after sales service.
How are you going to pay for it bearing in mind that they can cost thousands of pounds for a good new one and depreciate quite quickly in value.
What about insurance in case it breaks down, if you damage other peoples property, or injure somebody, how will you pay for this
I hope the above has been helpful I am not trying to put you off obtaining a scooter or wheelchair only trying to help you to consider the options avoiding some or all of the pitfalls in owning your own
.I thought it may help people who are considering buying a new or used scooter or electric wheelchair to provide some points to consider before proceeding with your purchase.
Have you ever driven a scooter or electric wheelchair before, if not why not join one of the Shopmobility schemes if you meet their membership conditions. Try using different types for a while to see which suits you best if at all. You could also contact Disability living Service to see if they can advise on suitable vehicles for your needs
Are you more comfortable with either a 3 or 4 wheel scooter, or if an electric wheelchair is better can you operate it yourself or do you need someone else to operate the controls
What do you want to use it for
If you want to get to the local shops are there sufficient dropped kerbs, how dangerous are the roads to cross, why not try it in a manual chair or if you are able, try walking & see if you would be safe what obstacles are there to negotiate
What about trips out to towns & cities, it matters how you are going to reach your destination, not all public transport is accessible, if travelling in your own or a family car how will the vehicle fit in, will it need taking apart., if so because of the size & weight is there someone with the ability & strength to place it in the car then reassemble it at the other end if the car big enough
Where are you going to store it is there an accessible garage or shed where it can be kept, if not will there be problems trying to find a suitable place in the house without causing an obstruction.
Where are you going to buy it from, beware of companies that are only interested in making a sale at a great profit, make sure you check out various providers & check the different prices, ask friends where they bought theirs, were they happy with after sales service.
How are you going to pay for it bearing in mind that they can cost thousands of pounds for a good new one and depreciate quite quickly in value.
What about insurance in case it breaks down, if you damage other peoples property, or injure somebody, how will you pay for this
I hope the above has been helpful I am not trying to put you off obtaining a scooter or wheelchair only trying to help you to consider the options avoiding some or all of the pitfalls in owning your own
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