Wednesday, 19 January 2011


Please click on this link The Broken of Britain

and add your voice to the outrage at this Government's determination to

remove essential financial support to people with impairments.

The Government think taking money from the dis-abled is the easy option

to address the deficit in the country's budget,

because they believe we don't have a sufficiently loud voice to stop them.

Then please go this PETITION calling for the Government to keep

Disability Living Allowance mobility component

for people living in residential care homes.

Thank You

You are invited to leave a comment that
you have been able to add your voice
to these essential campaigns and petitions

Friday, 14 January 2011


Kaliya Franklin in the Guardian writes to draw attention to the proposed cut to the Mobility Component of Disability Living Allowance for people living in care homes.

So, what if you are not disabled, you don't know anyone disabled, you will never be disabled, disability does not cross you path, your day, your life. The cuts are beginning to hit you so you think they should be fairly distributed to all, including the disabled; you think cuts to disability living allowance is only fair.

You are not alone. The Prime Minister thinks like you.

Yesterday in Parliament during PMQ - Prime Minister's Question Time - when he is questioned by other Parliamentarians - your MP and mine - on policy decisions or other things that go wrong - he made the telling comment on WHY the mobility component of Disability Living Allowance is going to be stopped YES STOPPED, REMOVED, DISALLOWED, to people living in care homes. He said (not verbatim) that as people in hospital don't get the mobility component of Disabled LIVING Allowance, it is right that people in care homes will be brought into line with that, and NO LONGER get the mobility component of Disability LIVING Allowance.

Beyond belief. That it has come to this.

It is such a huge infringement on human rights, that I can only think that all others who have NOT protested (be they MPs, or everyday workers, mums, brothers, friends, colleagues) must surely think, like the Prime Minister and all the civil servants who prepared his policy and his PMQ answers, that people in care homes are being looked after so why do they need the money.

Well, obviously it is not obvious to them, but it is to me, as I am disabled and my understanding is:

That people in hospital are patients, and are there because they are ill and, hopefully, being treated for that illness. Over simplification, not covering all circumstances, I know.

That people in care homes are there because they need daily care, beyond what can be provided safely or economically, in their own home. They do have a life beyond the care home. They are not inpatients, they are residents. In order to live that life, they need the mobility component of DLA - in order to get out and live their life as they wish to live it, within the restrictions inherent in their impairment, but NOT restricted, not dis-abled from social inclusion by lack of money to pay for the means of getting out ... the accessible taxi, the wheelchair accessible vehicle, whatever they need and need to pay for - with the mobility component of their DLA.

I have a tiny glimmer of hope - THE LAW - HUMAN RIGHTS - the legal right, the right in law, to a socially inclusive life.

Hopefully the legal eagles will swoop down on this. Other MPs will speak out. IMPORTANTLY - YOU will read this and do something to support the right of people in care homes to have a life outside of that circumstance of their daily living. You will click on this LINK and respond.

If this prejudiced ignorant change in policy is over-turned then the right to go for a 'walk' on the beach, in the rain, will still be possible - thanks to the mobility component of Disability Living Allowance !

Brian Rix, President of Mencap, House of Lords, writes in Saturday 15 January Guardian letters:

" I was shocked when it was announced that the disability living allowance mobility component is to be removed from those in residential care. ...

... My co-chair of the all-party parliamentary group on learning disability, Tom Clarke MP, led the "impassioned debate in Westminster Hall before Christmas [in which] MPs from all parties spoke of constituents who were terrified of being robbed of their freedom".

Despite the overwhelming evidence of the general disquiet at this malign proposal, the prime minister - during this week's prime minister's questions - appeared totally ignorant of the true situation. Answering Tom Greatrex MP, he said: "Disability allowance is an important issue and our intention is very clear; there should be a similar approach for people who are in hospital and for people who are in residential care homes. This is what we intend to do, and I will make sure it happens."

But do they not recognise [writes Brian Rix] that when you are in hospital you are ill and extremely unlikely to be allowed out to go shopping, for example ? ... Even those with profound and multiple disabilities want to have their freedom, but they are not ill they are disabled. The government may argue that their health needs are a problem, but they are not confined to their beds in an NHS hospital. They are free souls who wish to live their lives like others. To those who claim "we are all in this together", I would suggest this is being economical with the actualite."

Thursday, 6 January 2011

In the days before we knew ...

Do you wash your eyebrows ? Or your eyelashes ?

Thanks to medical equipment magic, we now have the technology to increase the power of microscopes so that they, we, see the little creatures that live on the hairs of our eyebrows and eyelashes, eating up all the dead bits of skin cells and such (and poo-ing out the parts they can't digest ?)! I don't know if we yet have the technological power to see the little creatures that live on the little creatures that live on our eyelashes, eating up all the bigger little creatures' bits of scurf, dead skin cells etc.

They don't wash off ! The microscopes can see the little hooks they have on their legs, clinging to our eyelashes. Enough. Don't give it another thought.

Isn't technology wonderful. Recently NASA have been working with a UK Uni (Bristol I think) and have discovered, (probably to do with space walking or some other such that I am sure wheelchair users would enjoy), that the inner ear doesn't only let us know where we are in space (up, down, leaning sideways, etc) but also that the inner ear controls the blood flow to the brain. "That's it !" I shouted, to myself: "That's my brain-shut-down thingy."

That was my eureka moment. And my GP's, who was equally jaw-droppingly impressed when I made the link with my weird medical condition that doesn't yet have a name, but will someday.

Background: my Lupus-related health problems are typical for this multi-system disease ... including pain and weakness and inflammation in soft tissues, and joint pains, and profound fatigue, and, and, and, .... and cognitive dysfunction ... and ..., well the weekly low-dose chemotherapy (Methotrexate) that I have been taking for the last thirteen years doesn't help much on two days a week when the side effects take over, but it helps the other five days a week, so I accept it. And fortunately I have a condition that systemic steroid injections really do help. So I carry on.

Until someone turns on a vacuum cleaner/drill/air-con/mobile phone trill within a few feet of me, ... and ... I look as if I am having a stroke. Facial muscles droop, speech disappears, slump in the wheelchair, peripheral vision gone, hands spasm into a claw .... oh yes, its quite dramatic, so I do try to avoid being in such situations and stopping the source of the environmental trigger to this reaction, and getting away from the source really really quickly (electric wheels essential) in order to recover. And the best way to recover, for me, is to quickly gulp down in strong mouthfulls, cold water, to release the block to the blood flow to the brain. Someone has to hold the drink for me. Then within a few minutes blood flow returns to the brain, face comes back, eyes come back, speech returns, hands and slumped body back on line and ready for action. Yup, I'm fine thank you. Onwards.

For years, I have been the one to label this odd reaction to noise and vibration - when, I have been told, I appear to be having stroke - as medical not psychological, not neurotic but medical, not attention-seeking but medical, mechanical-medical as opposed to psychosomatic. Real. Brain overloaded, getting wrong signals from the inner ear, can't cope ... shut down.

Over the years of following other bloggers I have found that many many people with impairments have struggled to get support; practical, financial, medical, because their impairment has not be named, cannot be classified, does not fit a label already existing in the medical dictionary. Therefore it cannot exist. And the person carrying the burden of the very real impairment, symptoms, pain, agony, distress, dysfunction, has to find their own way to survive.

Sometimes we are fortunate to find a medic who goes against this tide of negativity, and supports the patient, even though they do not have a label that can be written into the appropriate box in the forms.

My GP is one such star. She suggested I wrote to the BMJ British Medical Journal, 'Patients' Perspective' to describe my experience, and suggest the connection between Lupus, Meniere's and men in space/NASA's research. I will, when I have the energy and brain power to put it together much much better than I am doing here today.

My Doctor of Osteopathy also gets a gold star, even though he was the second one to trigger this reaction in me, because he worked out that it must be related to blood flow to the brain, and recommended strong swallowing to release the blood flow back to the brain. It works.

The first one to trigger this reaction to me, was the medic who tested me for Meniere's Disease. Squirting water into the ear under pressure. I had my weird reaction a few minutes later, on my own in the waiting room, and was ignored by the embarrassed staff, who left me to it for the half an hour it took me to recover. I was very distressed. In the middle of it I could not speak, see beyond a few inches, or move, but I was aware and could hear everything, so knew I could not be dead, yet.

Later at the hospital consultation with the test results, I was told that as I didn't have the reaction that would have proved M's Disease the ENT chap said there was nothing wrong with me and my reaction afterwards was none of their concern and not related. Wrong. I have subsequently decided, and my GP agrees, that I don't have M's Disease, but I do have Meniere's Syndrome, further complicated by Lupus. That the tinnitus I have had since my teens shows something not working properly in the inner ear, and in recent years is further complicated by the Systemic Lupus. So I have dizziness, tinnitus, noise recruitment, and hyperaccussis. I don't have deafness or the 'drop-attacks' that impinge on the lives of people with Meniere's Disease. And I do feel some responsibility for the tinnitus ... rock band 'Yes' loudly in Sheffield City Hall when I was about 17 and 3/4 years old ... forty years ago !!!

All this meandering comes back to the things the medics don't yet know, like the knowledge we have now, but didn't have before microscopes, about the creatures living on our eyelashes. Someday they will have a name for our weird and wonderful conditions that only we have, peculiar to our selves. Our various conditions will eventually, following research and more progress in medical diagnostic equipment, have a name they can pin on us. Then they will be much happier to take us seriously, and find a way of helping us.

Some day technology will catch up with our differing unique individual peculiar impairments and our realities will become real in the medical dictionaries and there will be a relevant box to tick on the numerous forms to be filled. Then mine too will get written-up and recognised and when it does I would like it to be formally named as Sally's Syndome.

In the meantime, Onwards !