16 August 2009


Got up this morning (well, afternoon. It's Sunday and I was still stuck in a traffic jam at 00:30 last night/this morning) to find a text message from a friend I'd hung out with yesterday afternoon. She's got swine flu. Great. So I phoned NHS Direct for advice and the nurse I spoke to carried out an "assessment":

Her: Do you ache all over?

Me: I have Ostesogenesis Imperfecta.

Her: Do you have a blocked nose or difficulty breathing?

Me: I have severe chronic sinusitis.

Her: Are you fatigued?

Me: I take 4 times the standard daily adult dose of antihistamines so I'm always fatigued.

Her: Do you have a sore throat?

Me: I have a persistent sore throat from the Nasonex

Her: Do you have any muscle weakness?

Me: I have Osteogenesis Imperfecta.

And my favourite:

Her: Imagine the worst headache you could possibly have. Do you have that?

Me: I have severe chronic sinusitis. My normal headaches require morphine.


05 August 2009

Save our DLA

Below is copied and pasted what lilwatchergirl posted on a messageboard.

Benefits and Work sent me the following e-mail. They're looking for 1000 people to sign up before they start hardcore campaigning, in order that there are enough people on board to make a different. I think their campaign is massively important, given the serious threat to our DLA/AA and other benefits.

DLA was established, after years of research, because the costs of living as a disabled person in a barrier-filled world organized by and for non-disabled people were considered to be so high. The estimated costs of disability that came out of this research were far, far higher than what is actually now given to DLA claimants. It was also emphasised that DLA should not be means-tested, because the costs of disability are high whether a person is extremely poor or generally has enough to live on.

Yet the government is proposing either means-testing DLA and AA, or removing it altogether. Their proposal to put the money in the hands of local councils is TERRIFYING, especially to those of us who have experienced first-hand the way that council-funded care has been limited, cut and removed from a majority of disabled people. Councils would leave DLA claimants without enough money either to fund their care or to cover their disability-related costs. The end result of this could well be the death of the poorest disabled people. Do we want to live in a society where the richest are subsidised to the tune of millions (HBOS et al), while the poorest people with the highest costs are left without enough money to fund their care, to support their mobility needs or potentially even to eat?

Benefits and Work's e-mail, detailing their campaign, is copied below. They have 300 people signed up to the campaign so far. Help them get to 1000, and then we can start campaigning.

Ideas for smaller-scale campaigns to support this one could be thought up and discussed here, too...

Claimants have just 100 days to prevent their DLA and AA being abolished.

A government green paper has revealed proposals to stop paying ‘disability benefits, for example, attendance allowance’’ and hand the cash over to social services instead.

Under the plan, current claimants would have their disability benefits converted to a ‘personal budget’ administered by local authorities and used to pay for services,– not to spend as they wish.

Once the green paper consultation period ends in 100 days time, if an almighty row has not been raised, it is likely that both major political parties will see the lack of outrage as a green light to end both DLA and AA.

We’re looking for a minimum of 1,000 claimants, carers and support workers to join our campaign to save these benefits from being abolished. Find out how you can take part from this link:


We know that many people will take false comfort from the fact that, unlike AA, DLA is not specifically named as being for the axe. But if the government was planning only to abolish AA it is extremely unlikely that they would refer constantly throughout the green paper to ‘'disability benefits'’, a term which includes not just AA but also DLA.

Others will dismiss this as just another idle discussion document and our concerns as scare mongering. But it’s much more than that.

36 meetings have already been organised around the country for people working in government and the caring professions to meet to be told about the setting up of a new National Care Service which would oversee the system. In addition, a stakeholders panel of more than 50 voluntary sector organisations, trades unions and academics has been established to offer advice to the government.

Some organisations and individuals, such as RNIB and welfare rights worker Neil Bateman writing for Community Care magazine, have already voiced their alarm.

But not every disability organisation is opposed to the proposals and some even agree with them.

In a press release, Disability Alliance has welcomed the publication of the green paper and said that it ‘looks forward to working alongside Government and all the other stakeholders in bringing these plans into fruition.’ They have even said that they agree that there is a case for ‘integrating disability benefits such as attendance allowance’ into the new system.

One thing everyone does seem to agree on is that huge cuts in public spending will have to take place in the next few years as a result of the credit crunch and global recession.

Political parties are desperately looking for the softest targets to be the victims of these cuts. Dismissing the green paper’s proposals as hot air and not worth worrying about could be the costliest mistake you ever make.

Find out more about the proposed abolition of DLA and AA and how you can join our campaign to fight back:


Please sign. Without my DLA I'd be practically housebound, unable to afford supermarket deliveries and would pretty much have no quality of life at all. Also bear in mind that most people develop some kind of impairment in old age; Attendance Allowance, a benefit for over 65s who need assistance, is currently the benefit at the top of the "at risk" list. So signing this petition isn't just for those who are currently claiming, signing up is an investment for your own future!

Links to people talking about the proposals:

Bendy Girl
Neil Bateman (I feel like he should be "NeilBatemanGirl" as the other people I'm linking to about this all have "somethingGirl" as their moniker. I do not wish to imply Mr Bateman is in any way effeminate; I do not know him from Adam. Or Eve.)
Edited to add: Purple Noise (OK, another person without their handle being somethingGirl)
More from Lilwatchergirl

If tweeting on the subject please try and use the hashtag #saveDLA. The media takes a lot of notice of Twitter these days so it'd be awesome if we could make #saveDLA a trending topic. A shortened, easily Tweetable link to this post is available: http://short.ie/aws3bv

Edit Aug 7th: There is now a Facebook group protesting the planned DLA/AA axe. And from Nabil Shaban (yes, he was in Doctor Who):

"First they took away your "Home Helps"
Then they took your Incapacity Benefits
They they took the DLA Care, and Attendance Allowance.
Then they took away your Mobility Allowance, and Motability
Then they forced you back into institutions
And then offered you Assisted Suicide"

Edit September 8th: The Number 10 petitions website reopened for business yesterday following the summer recess. A Save DLA/AA petition has been created: http://3.ly/saveDLA. Please sign and pass the link on to anyone and everyone you know.