Gosh! there seems to have been so much going on recently that I have lost touch. I have been dipping in to the site every now and then but am now missing my new cyber friends.
I have recently had my appeal for an increase to middle care rate of Disability Living Allowance accepted which is great news and will make a huge difference to my day to day life. The extra £30 odd pounds per week will pay for someone to cut my grass for me and maybe the occasional hour of cleaning services.
It has taken a few months to get this far while the DWP write to my GP and OT and during this time I have become more aware of what appears to be a rising stigma attached to the receipt of disability benefit.
Now that I have been granted the Middle Care Rate I have received a letter informing me that I may be entitled to the Severe Disablement Premium. This is not the same as the Severe Disablement Grant, which I think has now been abolished. Apparently the premium is to make extra allowances to those of us who are on Income Support (I am on incapacity benefit which is topped up by IS). I may be wrong here, but my understanding of the level at which IS is set is calculated on the minimum amount the government says we need to live on per week. The important part to note here is the word minimum ie: without luxuries. The Severe Disablement Premium is granted in recognition that in order to maintain those minimum levels of basic living we (as disabled people) have more expenses to consider. That said, I have read that it is going to be abolished in April 2013. Can anyone tell me if this is true? If so, does that mean that we have suddenly developed an ability to manage our care needs without help or, more disturbingly, are we going to be suddenly expected to live below the minimum calculated income?
I recently had a water meter fitted and was chatting to the man about life and the universe in general. He was very put out about the raise in his expected retirement age (for good reason) but then, rather tactlessly I thought, went on to run down his neighbour who is claiming Disability Allowance and yet had a large TV. He was very upset because he personally could not afford one for himself and thought his neighbour was getting something free at his expense. Let’s think about this for a moment…….Perhaps his neighbour has a large TV because he can’t walk, can’t go to work, can’t afford holidays, can’t afford a mortgage, can’t dig his garden or the trillions of other things that people take for granted. Maybe the TV is actually all that he has got, in which case he bloody deserves a TV as big as a house if he so wishes.
In the light of the paraolympics, we are all encouraged to look at what we CAN do rather than what we can't do. I am not suggesting that this is a bad thing. I think it is admirable to maintain a positive outlook on life - BUT it should not be used as an excuse to withdraw support to those who actually CAN't manage by using subliminal suggestions that they are not trying hard enough.
DLA and the other benefits we receive because we are not able to work are NOT the same as unemployment benefit. There is a lot of talk at the moment about ‘giving us the incentives to return to work’. That kind of talk is admirable if and only if we are actually able to sustain work for a significant period of time. I personally, have been on supported work for several times. The reason it has been several times is because I have been unable to sustain it. Taking away our premium is not going to be an incentive to me getting back to work – it will be a lowering of the minimum amount I need to live on and therefore a withdrawal of my basic human rights.
Being able to work and finding a job are two very different things. I would love to work, but who is going to employ me with what i have wrong with me. As soon as you tell them you have ra then you can kiss the job goodbye.
Another thing,the man who put your water meter in wants to try and walk in our shoes for a day and see how hard it is. Yes there are scroungers out there who seem to get everything when people like us who are generally ill get penalised everytime. These new pips that they are bringing in means we will have to go through the whole medical thing again. It doesn't matter that the stress makes our diseases worse doesn't matter to them.
Thats my rant over creaky and i agree with you. Love sylvi.xx
Very true Sylvi - especially in today's economic climate. There are lots of people after the same job so it is inevitable that employers are going to select the most reliable.
I also think that we owe it to ourselves not to allow the talk of scroungers to get to us and make us feel guilty for not working. As you say, we are the ones who know and other's can be very ignorant in their prejudice. We need to stand up for ourselves and not keep apologising.
I feel that my ranting has more to come yet so watch this space!!
Now my turn... As you all know I've been contemplating going back to work as I have been placed in the wrag group and want to jump before I'm pushed. I had my compulsory interview at the job centre last week and the guy I saw asked me for a rundown on my medical history as he only had that I had ra and that was it. Three pages later, the rather shocked gentleman said he would leave me to do whatever I felt was right and that he wouldn't need to see me again unless I wanted to see him.
I have an interview on the 10th for a job for 37 hours a week as it is the only way I will break even once you take the fact that I won't get council tax benefit etc anymore and wages are so low where I live. Probably hit the deck after a few weeks but I don't have a choice so then I'll have to claim goodness knows what again and all the gad worn I've put in to get to where I am physically will have been in vain.
I have been following your blogs about your need to return to work and I understand entirely. I returned to work several times during a 'good spell' only to have to give up at a later date. I was very fortunate in that the school head was extremely accommodating about juggling my hours around and changing my job title. I eventually went from class teacher to part-time teaching assistant but in the end could no longer sustain it. I was only putting off the inevitable and ended up letting people down and feeling a failure every time I had to reassess my work.
I still browse through the jobs available in the same way as people look through dress catalogues in the hope that I will see something just right.
There are people out there who are prepared to make allowances so I wish you luck with your search but think really hard about what you can reasonably sustain.
Hi Judy, I know you're right. I am deluding myself really that I'll be able to go back to work full-time. I think I'm in love with the idea rather than the reality.
That shouldve said good work not gad worn. Typing on my iPhone xxx
Glad to see you back Judy, was wondering where you were. Good news about your increased allowance.
Oh all this b&^%---cks about disabled people getting all the benefits & then driving off in their Porsches to climb everest whilst swigging vintage champagne. Total ignorance and nastiness. And there's going to be more & more of it due to the recession because we're all encouraged to turn on each other rather than gang up on the system.
I'll just stop there, I think,
Christina xxx
• in reply to
Hi Christina,
Yes, it's a huge relief about being on middle care rate and I am very grateful for it. It also opens a few more doors in terms of getting people in. An extra £30 is not loads but it makes a huge difference to my state of mind. It can be quite depressing to see your home environment gradually falling into neglect because you can't manage to keep it going.
There is a little old chap around the corner from me who wanders around the neighbourhood with his lawnmower - I'll be able to get him in to cut my grass now and he'll have a few extra pounds in his pocket. It's a win, win situation.
What is left can then be used to fuel my private jet to the Caribbean.
I agree christina. Im worried that though the parolympics is sending out a positie message about disabilities it also raises expectations and not all of us can be superfit heroes. And theres danger in the refs we make sometimes about scroungers. I used to teach about the welfare state and there have always been many more benefits unclaimed than scroungers. The idea of scroungers is being used to delegitimise the rest of tge population on benefits. Ive never received much but would really miss the bus pass, and money to helpnwith cleaning would help enormously. And theyre stopping the independent learning allowance which has allowed me to do one free course a year at the lOcal art college. Thatll hit their enrolements. I dont like the divisions that are opening up among us!
Alarm bells started ringing for me when Cameron was 'spontaneously interviewed' during the start of the paralympics and was making much of the message about focusing on what disabled people CAN do rather than what they CAN'T. It all seems very positive but as you say, it rather implies that we are all capable of a lot more than we let on - if only we tried harder. In the light of recent reassessments to encourage disabled people off benefit this does not bode well. It is also contrary to all of the forms that we have to fill in which focus entirely on what we can't do.
So many of us would love to return to work and earn a decent living - I loved my job and I loved having an independent income - and I truly resent the underlying messages that are beginning to emerge in preparation for benefit cuts. I know that sounds a little like paranoia but I don't think it is unjustified.
Let those who claim it unnecessarily be found and shamed !! (A brand on their foreheads will be sufficient for me).
Otherwise those of us who ARE deserving of financial help because of ill health should just ignore any comments made by others who just dont know the first thing about it. If they did they wouldn't shout off their mouths.
I'm beginning to think that one of my ancestors was a suffragette !
Judi xxxxx
PS: I also still think we shouldn't have to pay for prescriptions (I'm retired and no longer pay - well, at the moment). RA and etc. sufferers are like diabetics and need meds for life once they are diagnosed) - see what I mean about being related to a suffragette. !!
I'm loving the idea of a RA suffrage. We could march to parliament and demand our rights (actually - 'march' may be a little overstatement here - how about hobble?)
Personally, I'm against any witch hunt for benefit scroungers though as I think it encourages people to generalise and make uninformed judgements. Of course there are scroungers out there, just as there are tax evaders and fraudsters. It is not for the public to seek them out though and I think the whole idea of a hot line to report benefit frauds is horrible.
After all, there are some days (getting fewer) when people could point the finger at me and say there is nothing wrong and then they just have to thumb through the local phone book to find the 'red phone' number.. Soon we'll all be walking down the road with an enforced limps to avoid being misjudged - particularly with this type of disease as it is not always outwardly obvious.
How is your spine Judi? Mine feels as though someone has hammered in several wooden pegs down my back and left leg. Meds make it bareable provided I don't move but if I do it hurts....a lot. The trouble is, it is best to keep moving so pain is inevitable. Time to invent spinal replacement I think.
Hi Creaky, my spine is a bit on and off at the moment. I'm alright while I am lying in bed but when I turn over I make a bit of noise !
I'm having steroid injections to help (I'm told that I should have one every 6 weeks until they sort out a new biological for me) but I am to come off of the tramadol, which I am doing, slowly, I am only taking them when I am really in pain. The steroid injections are helping which has meant that I have been in less pain when walking about but the pain still kicks in eventually and I know I have done enough which means my husband ends up going and getting the car while I sit somewhere and wait on the rare occasions when I go out.
We went to the hospital to see our daughter (and new grandson) so I walked from the car park, up one lot of stairs to the lift (the first one was out of use), then onto the ward she was in. I sat down for half an hour and then did it in reverse but couldn't make it back to the car park so I had to sit and wait until my husband picked me up in the car.
I am refusing at the moment to go down the road of wheelchairs which would be a sensible course but my thinking is 'if you dont use it, you loose it'.
Sorry you are in so much pain, have they suggested a steroid injection? If not why not ask for one. My back troubles started when I had sciatica in my right leg which I put up with for almost a year and eventually I had to ask for one although I had previously asked if there was anything else I could take and was told "No". The sciatica plus back pain was so bad that I had trouble breathing through it. It was only after reading someones comments on here that I realised that I should ask for the steroid injection.
Sorry for being so long winded in my reply, I never seem able to keep it short.
I agree with the last two comments. Was just thinking about the resources that have gone to train the parolympians. Perhaps the answer to the likes of cameron is - bring on the hydrotherapy and physio and free swimming ( you can add your own) for us all. I really dont begrudge the resources that have gone into the parolympians. And ( not but) i think wed all be much better physically and psychologically if we had more support and resources to exercise. To return to my cherished bus pass, i think that helps to stop a lot of older people getting housebound. And its only taken up by people who use public transport. Im in a ranting mood as i have to deal with difficult elderly parent situation today.
Rant away Cathie. It is good for the soul and stops you from killing elderly parents.
I used my bus pass recently to take the local bus rather than using my car. I had a lovely time, I met all sorts of interesting people on the bus. I was invited to coffee by one lady and encouraged to join the U3A for recorder classes (don't ask) by another. I was also asked to be a volunteer for the town museum and that was all in a mile and a half journey.
I've decided that bus journey's can be the hub of local communities and agree totally that bus passes are essential for older people.
congratulations Creaky - it's not an easy decision to go from knowing you're needs have increased to applying for a middle rate - because of the risk you could lose the rate your on - been there myself with a possitive result. So glad it worked out for you and what a difference it will make.
We all admire the Olympians and the Para-olympians - fantastic, but neither are the norm. The Para-olympians do not represent the majority of sick and disabled, nor do the Olympians represent the majority of the able bodied.
As always an interesting piece, I am in the process of trying to claim on my income protection policy. This paid out 9 years ago when i was first diagnosed and couldn't get out of bed and took half an hour to get up stairs. 2 years later the meds kicked in and I went back to work full time but always struggled, mostly (I realise now) with my level of concentration and of course tiredness. I know I tried to do too much thinking I was 'cured' (stupid boy). Last September I gave up employmet and went self employed with the naive idea that working for myself I could 'control' my day and get the required rest. It didn't work (surprise, surprise) and now have to put in a claim, which I guess I should have done last September. How do you explain to the nurse sent by the insurance company to asess me that there are good days and bad days and we never know when, so how can you hold down a responsible job? Rant over!
This is a common problem Ethan. I made a suggestion somewhere that each surgery should have a designated person who can be contacted by the powers that be about people with chronic disabilities who will have access to our details so that they can explain our problems. Doctors, consultants and specialist nurses are too busy to have to act as 'guarantors' for our illness but we need a professional person somewhere who can support our claims.
i was awarded middle rate care earlier this year after having it rejected a couple of times few years ago and only reapplied due to a support worker then also the SDA which i got luckily . and ever since have really been waiting for them to take it back lol,
I use it for someone to help with house work ,to go with me to things that I would not go to alone and drives me to things that are a long er distance than I feel safe driving. I have had a rant on here about how we get treated and how suddenly we are expected to things that are not able to .
I do wonder if they think that we will all just keel over with the stress of how things are going at the moment. I have not had an assessment yet but part of me dreads it, I take care of my appearance and if dont walk further than the car and sit all the time I am "normal " and some say you look fine you must be better now, "oh you dont look in pain ..." mmm you dont look tired ...... I have had 40 years to hide and cope with the outside look of my pain ,We make the best of what we have ,we dont have a badge on us to say we have disabilities .It actually saddens me to see everyday how we and the elderly are being treated in this supposedly civilized country . we send millions in help to countries that are more civilized to the their old and ill. . Keep smiling ;)))
Hi Ethan - You might want to concentrate on your bad days - perhaps wording it a little differently - be truthful, but don't talk about good days as such. If you have pain all the time then on bad days I assume it is very painful and restricts you greatly, on some days there may be less pain, but pain nonetheless. I assume pain level may also be unpredictable too. As long as you are honest about stuff - it's the way you put it that matters.
You are so right. You see your care needs increasing and then they scare you to death with the threat you could be jepordising your original award, even when it was awarded indefinitely.
Agree with you pottypam a civilized country is judged on how it treats it's young, elderly, vulnerable, sick and disabled.
I am due to get my 5th Motability car in December. Quite honestly, I don't know what I'd do without it as there's no way could we afford to run a car at the moment and if I didn't get it I would be housebound as the bus stop is far to far away for me to walk to.
Comments when I first take delivery range from "you're so lucky!" (yeah right) to downright hostility. When we took delivery of the last one, my hubby went to pick up his kids for their usual bi-weekly visit. When we returned them on the Sunday evening, his ex-wife's new husband came storming out the house and proceeded to yell at my hubby about how if we were well off enough to buy a new car then we could pay more towards the kids (they get a good amount which we struggle to pay but always do as it's only right). No matter how much my hubby tried to explain that it was my car and not his, he wouldn't listen and even threatened to hit him!
I get my car in lieu of my DLA. I don't "get given" it as so many people comment upon. I have it because I choose to use my DLA allowance that way, the same as some would use it to pay for taxis or as others would use their care component for a gardener or a cleaner. It's what I need to get about - pure and simple.
People are so quick to judge and they don't realise that what they may regard as a throw away comment can affect us deeply.
As much as it is nice having a new car every three years, I would give it back in a heartbeat to have been able to run around with my kids when they were growing up or be able to dance at a party. Or simply go for a walk with my hubby on a sunny afternoon without having to plan it around benches to sit on and have to have a lie down when I get home.
The only reason we're lucky is that we do live in a civilised society which looks after it's more vulnerable members, even if it doesn't always feel like it. If they closed the loopholes that allow people to take advantage of the systems that are in place to help us, then I'm sure there would be enough to help those who need it without making us feel like scroungers.
There is one lady with RA competing for UK in the paralympics (archery I think). It would be great to know a little more about her and how she managed to get where she did. I suspect that, along with a good support system, there has been a gritty determination to get to the level she has. NRAS has a blog about her - follow the link above.
Judy
ps I just realised I have replied in the wrong box. This was supposed to be a response to your later comment but I'm sure you'll work it out (lol) xx
Reading all the comments here really makes me even more shy of claiming anything other than the disabled badge that I have, friends say that I should claim for help. But as I have my works pension, although not great, I feel that I should not be greedy and ask for more. I am not due to receive my state pension until 2018, in the meantime I am relying on my husband, although ten years older than me is still employed part time to enable us to have those extras.
I agree with the Paralympics, what they represent and am enjoying watching them. When watching my mind is on their faces looking for the pain especially for the ones with prosetics as they have had to go through a lot to reach that point. None of them have mentioned their pain when they are tired. Remember the walk for Heros which Prince Harry was on, their pain, damage was immense. I am sure that there are quite a few of us who knows of people with this type of injury and seen their pain as they combat life as we do.
There are young people out there with learning difficulties who look and act normal until they are tired or excited and then it shows. These people have also been targeted as scroungers.
I will get off my Hyde Park Corner box, will continue to look at all sides of life, the highs and lows, the wrongs and injustices and hope that there will come a time when we are all equal.
I watch the Paralympics in awe like so many others and wonder if, when I was younger, I could have done something like that and perhaps stopped this monster devouring me.
But then I think to myself what could I have done? I couldn't swim or run and I couldn't use one of those amazing wheelchairs as my upper body wouldn't cope with it. I couldn't shoot or be an archer as my arms weren't strong enough to hold a gun or pull back a bow. In any event, it wouldn't necessarily have been the pain that would have stopped me. I like many of us have learned to cope with that over the years. What would have stopped me would have been the drugs making me feel sick or the flares leaving me bedridden. This may be an exaggeration for some on here but for so many others it is a reality.
And that I feel is the difference between us and those awesome athletes. If it's only part of your body that's 'defective' you can work round it but when it's your whole body that's affected, it's really hard to do that.
My wonderful, amazing Dad has been an amputee for nearly 20 years but he says that what has helped him cope is that otherwise he is a very fit man. He's watched me over the years when I've felt so ill I haven't been able to lift my head off the pillow or been sick yet again from the drugs and he says that it was me who inspired him to keep going after his accident as if I could cope with all that this horrible disease throws at me, he could cope with losing a limb.
Don't feel bad about claiming Georje. If you've worked all your life and you can get a bit of help to make it easier for you then go ahead and claim.
claim georje, it will help you and your husband, it is not greed, it's to give you a quality of life.-a living allowance instead of struggling to get by. if you get mobility allowance you might get a car and can get out , care money might fund someone to help in the house - does this sound like greed? You deserve more than to struggle.
In response to the paralympics musings i saw an interview with a swimmer who had MS, she said that the most important part of her training was the resting...which i thought was a good and bad message to send out about us with invisible diseases. While it tells others that we do need the rest and get tired more quickly and easily it also says and in the words of my brother "if she can do it why cant you?"....probably because im not her and i dont have MS.....
I have my medical assesment on wednesday and im bricking it....ive been on jobseekers before and although i was deemed employable on paper i wasnt to employers, the mention of RA and time off for hospital appointments etc has them running for the hills.
As for the guilt aspect, my brother and dad have lauched a crusade against me as apparently i have everything handed to me on a plate....im currently claiming ESA and i scrape by living hand to mouth, in rented accomodation saving every penny i can get incase something goes wrong with something, i cant remember the last time i had a holiday, while both my dad and brother run 2 cars have sky tv which plays on massive l.e.d flatscreens (far too big for the 2 bed terrace houses they own) and have a least 2 holidays abroad a year. I dont resent them for having all this as they've worked hard for it but what they dont realise is that i know which lifestyle id rather be living....We didnt ask for this so why should we be victimised?!
I have had many a stress with my right to benefits, I'm 27 years old and have struggled for a diagnosis of RA for nearly 10 years and lost my entitlement to sick benefits as I was apparently to young for arthritis!
I have a diagnosis now but been refused DLA as apparently a bit of stiffness is not a physical disability despite the fact that most of my life I have limited activity and movement even down to being affected as a child and a teenager; I had no interview or medical assessment they just said no you don't meet the criteria despite the fact that i am living with my mother as I was struggling to manage alone with my baby boy.
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Another eye opener from our favourite government , NOT
Gutted regarding PIP
NRAS consorting with Government again This time about our ability to work. 
Life insurance /critical illness 
