But couldn't I "just"...? No. In my life there is no longer any "just". That word no longer exists. Every action, every movement, everything requires huge effort, pain and sacrifice, from getting up in the morning, to fetching something from the fridge, to answering the doorbell... As for going out, it is something planned for and rested for days in advance and recovered from for days afterwards. That is during my "good" periods.

None of this is to make people feel sorry for me. But just to TRY to make people understand that under these circumstances working is out of the question. And it will remain so unless my doctors can make me a darn sight better than I am now.

Benefit policies need to take account of people like me. Because I am not alone. I am not unique. I am not special. But I am also not worthless. And right now, not only are my benefits under threat, I am being made to feel so.

My own case:

Round 1:

ESA50 sent in

Put in support group without medical.

I later learned that this was under the "special rules". I was so sick that I was considered unable to have a medical. However, what they didn't say is that you can only receive ESA for 6 months under these rules.

Edit: special rules don't just apply to terminally ill people. They also cover people too sick to have medicals.

So, 6 months later:

Round 2.

ESA50 sent in.

After a bit of confusion due to lost forms, put in support group without medical.

Then after several weeks received a call up for a medical. It turned out that they look at your ESA50, estimate which group you are likely to be in and put you in that pending your medical. Or, if you are already in receipt of ESA, you continue receiving it at that rate until your medical.

Had medical as a home visit.

Was put in support group. Doctor asked for me to be left in it for the longest time allowed without review.

So now, instead of getting an incapacity payment and an IS top up, she will just get one single ESA payment. 

Incidentally, you may have heard about all this issue of ESA only being payable for one year for people in the WRAG from 2013 onwards. This will NOT be the case for your daughter if she is receiving the income support element of it. People who receive the income element don't have a time limit on it. Just thought you would like to know that in case you hear of it and start to worry. ;)

Strangely none of the tabloid newspapers reported these new figures.

What they neglect to say is that only a tiny proportion of people on DLA receive this. A very large proportion only receive LRC, ie around £20 per week. 

It is why there is such worry about the change to PiP and the stated aim of cutting costs by 20% and the change of 3 rates of care to 2. If they simply do away with the low rate, these people will no longer receive any benefit at all.

Another thing they neglect to say is that among those who do get the £125 per week, many have to pay towards their care. My own care costs are currently £86 per week.

If I'm going to cancel my "usual" care, I do tell my carers why. But there is a big difference. These are my own carers, paid for by direct payments. I see them day in, day out and although I maintain a certain professional distance, I tell them a little bit about my private life while they are here. Because I am mostly housebound, going out is a big occasion I am usually excited about and so I will almost always tell them about it. In the case of my morning carers it also means they won't get paid as they are paid on an hourly basis, so I like to explain why.

However I also receive half an hour a week help with paperwork, provided by an agency. If I cancel that, I don't necessarily tell the person in the agency office why. I don't know them and don't see why I should tell them anything about my private life. They are providing me with a service I am paying for (at least half of it anyway) and it is entirely up to me whether I use it or not. I don't feel I have to justify myself.

P.S. Jockice, your life would fill a book!

The category you might come under is this one:

And their freephone number is 0800 072 8625.

Ironically you've hit on something there.

The government are about to shoot themselves in the foot.

You may have heard that they are removing the severe disability premiums from ESA. This will hit the most "severely" disabled people. Personally it is going to cut my income by a minimum of £30 per week.

Except that it won't. Because all of it currently just makes a pit stop in my bank account before going to Social Services to pay for my care.

What WILL happen is that my contribution towards my care will drop by a minimum of £30 per week. Social services will somehow have to make up the shortfall. I myself will notice no difference in income.

All around the country social services are suddenly going to be hit hard as benefit "savings" turn out to be nothing of the sort, just a shift of cost from benefits to care costs.

Just another example of the government not thinking things through. When I pointed this out to my MP she was just shocked to discover that people on benefits had to pay anything towards their care. She thought that only "well off" people were expected to contribute. I wonder how many ministers think the same thing.

It comes down to the same question I often find myself asking: are they misinformed or misleading?

Sadly in the cases of Mr Grayling, IDS and Maria Miller, I believe it is the latter and they know exactly what they are doing.

And yes, the time is from the moment THEY send it, not the time you receive it.

It took me more than 4 weeks to fill in, and that was doing a little bit every day. I could not possibly have done it any faster... because I'm ill ironically!

Oh, and don't bother sending it back recorded delivery. There is a bit of a scandal about that at the moment. All ESA50 forms are opened centrally by Royal Mail staff, bundled together and then sent on to ATOS. So nobody will be able to sign for your delivery. It also means that completely random people are able to access your private details, including very personal medical information.

For more info about this, see Sue Marsh's excellent blog. There has been quite a big reaction about this and I really do hope something will be done about it.

Ideally we should strengthen our position and change things in a better way later.

For instance get funding for things as a matter of course and not haphazardly at the whim of a charity or goodwill of some celebrity.

But we are such a long way from that, so we need to take what we can for now. 

I advocate a two pronged approach. Accept and actively look for help where we can from any source. At the same time campaign for better and proper all round funding and services in the long term (fighting benefit reforms, reversing bad changes, getting better funding, etc).

No need for PAs.

No need for DPs.

No need for mobility PIP.

No need for ESA.

Motability will cease as it will probably be cut although ministers promised it wouldn't be.

But on the plus side we can have community days out, basket weaving and bingo (to be confirmed. A white paper is probably in consultation over whether numbered balls provided in care homes constitute an overlap in funding).

For instance on all correspondence to my MP, the DWP, ministers, taking part in petitions, government inquiries, consultations, I will use my full title (ie Dr).

It is a very sad thing but it seems to get me noticed and I get much better responses than if I simply call myself "Miss" or "Ms.".

It shouldn't be that way, but it undoubtedly is. I've been writing letters for a long time and the difference was extremely noticeable when I qualified and started using my title.

Although I don't like the frame of mind that will respect me more simply because I have a title to my name, I regard it as a weapon to be used. 

Some of us go on marches and protests like the one last weekend. I can't do that but am very grateful to those who do. 

I on the other hand am quite good at writing letters etc. So I do that on behalf of those who can't. And my title is a really good aid for that sort of thing. 

If we all do the things we can, I hope we can eventually get somewhere. And I think we should all use any advantage we have.

It is despicable.

Anything else I want to say is unprintable.

I'm really sorry to hear about your predicament. Are there any schemes at all your company is running that can help? Could you change company?

I'm with British Gas for both electric and Gas. I'm really not sure if it is the best around, particularly with the recent price rises, but my total bill for the next year will come to around £900. And I've just discovered that I'm going to get a £120 discount off that.

I'm lucky living in a ground floor flat as it seems to keep the heat well. I don't skimp on heating. However I do suffer from the cold so I also use electric blankets in both my bedroom and the lounge (I have a daybed but a single one will go on a sofa or an armchair!) as well as a duvet at all times. If I were to put up the heat to comfortable levels for myself, all my visitors would die of heatstroke! ;) 

I can't use energy saving lights due to photosensitive illness, but am very careful about switching lights off. As far as heating water goes, I suppose this is the one time where being unable to make cups of tea, and being too ill to have more than one shower a week has its advantages!

I just phoned up British Gas after finding out about their Warm Home Discount Scheme.

If you're getting DLA, or income support or have a low income then you are eligible for a £120 discount this year.

My phone call only took 10 minutes. 

You'll need your British Gas customer number and your National Insurance number (they will probably check with the DWP that you really do claim the benefits you say you do, which I don't have a problem with).

They also asked me which sorting office dealt with my DLA claim for some reason, so you may want your DLA award letter to hand.

The only thing that really annoyed me even though it didn't affect my eligibility is that they wanted to know my income and asked how much I got on my ESA.

Now, I get a high rate of ESA and then get disability premiums on top of that. However social services then come along, consider it to be "disposable income" and take back 95% of it on top of taking my DLA. I currently pay £85 per week towards my care as a result. So I actually get £45 per week less than what the ESA rate is and I have no choice whatsoever in the matter. Yet that is what they used to work out my income! 

"Luckily" it is still enough for me to be considered "poor" and "vulnerable" and thus eligible for the grant. Grrrr!

Saw it briefly on BBC news.

Nothing else.

A couple of articles on the BBC news website.

Sue Marsh, disability activist and blogger of Diary of a Benefit Scrounger, due to talk on Radio 5 had her show cancelled.

I was supposed to be having a telephone interview by a BBC journalist but that also got cancelled.

The Mail and Telegraph were instead talking about long awaited clampdowns on Motability. Those really made me mad.

How can we make ourselves heard or get things changed when we are ignored by the media or they spout false information?

Had even more of a rant on my blog. I'm getting so disillusioned that it is starting to get to me. At this rate the anti depressants will be going up again soon.

If we are lucky enough to have savings or income, then we should be able to top up motability to buy a more expensive car.

In some areas if you qualify for an NHS wheelchair there is a voucher scheme whereby you can top it up to get a more expensive wheelchair if you want to.

In either case the "tax payer" pays exactly the same. But we, the receivers choose what to spend our own money on and can add it to the benefit to buy something either better or in some cases more appropriate.

If they start restricting this, what will come next?

Will they say that we can't spend incapacity benefit or ESA on "luxuries" such as a holiday or a television? Will we be given a list of things we can and cannot buy? Will we start moving towards the food stamp system?

I have to say that I am extremely concerned by this, particularly given that DLA is supposed to be a non means tested benefit.

YES! You did. And you were reported to the PCC and you falsified the facts and you had to print a correction! You may yet have to print an apology. 

Going back to the case at hand, the 5 mile rule is completely stupid. I can't drive for medical reasons and have decided not to have a car and get my DLA mobility payments instead. 

But if I were still working I could easily imagine a scenario whereby it would be cheaper for me to use my mobility DLA to get a car and get my PA to drive me to work every day, particularly in light of the cuts to Access to Work. This would prevent me from doing that as my PAs do not necessarily live within 5 miles of me!

And yes, this will remove motability from a lot of people in care homes too. Very clever Mr IDS.

I am so upset. AGAIN!

But that is ok, because I can pay for it out of my DLA.

Oh no, wait, silly me! Social services take it all to pay for my care! (received letter today informing me of increase in my contribution from £68 to £89 per week. After all, I have to give 95% of my so called "disposable income" towards it, and that apparently includes my DLA...)

On the plus side, the consultants have mostly all given up on me now and pronounced me incurable and discharged me as there is nothing more they can do for me. This means far fewer hospital visits. On the downside, in a few years time when I have to fill in my ATOS forms etc, they will see I haven't been to hospital in a while and probably conclude that I'm not sick...

I hate this world.