Today's the day! So will the Lords do the only right thing?

So today's the day. The last chance for the Lords to vote for an amendment to call for a pause to the proposed changes to DLA (Disability Living Allowance). If not it will be seamlessly morphed into the unfit for purpose PIP (no, not the dodgy boob implants, the equally dodgy Personal Independence Payment!) that may well make unbearable and unlivable the lives of the most vulnerable disabled citizens in our country. They were promised they would never be betrayed. Through the tireless efforts of the disabled through the "Responsible Reform" Report, a new amendment has been tabled.

Again this is the eleventh hour. Again the disabled are fighting for their lives.

With M.E., plus Type 1 Diabetes with frequent severe and unannounced hypos, it has taken all my strength and last shred of dignity just to be transferred from IB to ESA. Even though incompetent and duplicitous ATOS have now plopped me unceremoniously into the incorrect WRAG (Work Related Activity Group), I'm pathetically relieved and thankful they deemed me of limited capability for work at all, given the current level of wrong decisions going to appeal. When I turn up crashed, brainfogged and crippled in my dogcollar at the Jobcentre again, we'll see exactly where their areas of expertise lie.

I have never applied for DLA (Disability Living Allowance) myself, just because, although I have long periods when I seem to fit its most stringent criteria, I find it hard enough to claim the ESA I need to survive, without having yet another ongoing claim where officials can look on me as if I have crawled out from under a stone. If I can manage, I will. The criteria for qualification for PIP were released yesterday here.

I am often like Katy in Case Study 1, but living alone. In that scenario I would qualify for PIP with "enhanced rate Daily Living component" and "enhanced rate Mobility component". At other periods my health may mean I more resemble Rachel in Case Study 2 who qualifies for nothing. Sorry my fluctuating serious lifelong illnesses are inconvenient enough not to fit the tick boxes. Sorry my body refuses to a)recover or b) die for your convenience! No wonder I daren't apply!

The whole PIP assessment thresholds leave you confused and despairing at the sheer lack of coherence and understanding of disability. There is so much emphasis on the upper body that you have to ask yourself if the DWP think all disabled people are mermaids, without legs or crotch.

Ironically, if I can go back to work, the fluctuating and lifelong conditions I have mean I might probably need to claim DLA for extra transport and mobility costs, etc. One day, any one of us might.

So here's the email I've just sent to about 90 Crossbench peers, following a flurry of tweets last night.

If the Government don't tamper with any more balls, sanity and victory may be almost within our grasp!

Email to Crossbench peers:

This morning, the following amendment has been tabled :

Clause 80 - Amendment 50E
BARONESS GREY-THOMPSON
BARONESS WILKINS
LORD LOW OF DALSTON
BARONESS CAMPBELL OF SURBITON

Page 58, line 26, at end insert—

“( ) The Secretary of State must lay before Parliament an independent review of the plans for implementation of the assessments under section 79 before the provisions are brought into effect, and such plans must in particular provide for—

(a) a trial period before any assessment process is implemented fully for new applicants and those transferring from DLA;

(b) disabled persons organisations to be involved in formulating the assessment process.

On behalf of all genuinely sick and disabled people, their families and carers , may I ask you to make it an urgent priority today to vote for this vital amendment to the Welfare Reform Bill?

Following the wise, compassionate and reasoned “Responsible Reform” (also known as the Spartacus Report), the rest of society is starting to grasp the deeply flawed nature of the proposed reforms as they stand. Without a pause today, devastating and unjust changes will be rushed into law. The amendment calls for a pause to reconsider and amend before it is too late. 

We all understand how essential is giving disabled citizens a life that is not just barely tolerable, but which gives them a chance to thrive and enable them to use all their gifts and talents to enrich society, while having quality of life themselves with all their added costs and difficulties in accessing what others take for granted. The Welfare Reform Bill as it stands, without serious amendments, will cost the country so much more in the long run than has been mendaciously suggested by some.

I respectfully beg you to help by doing your part to understand the real issues and vote for what is right.

Thank you so much for your time and attention,

yours sincerely,

etc

Sent to: andrew@amawsonpartnerships.com,
alastair@aberdares.co.uk,
adebowalev@parliament.uk,
afsharh@parliament.uk,
michael.allenby@btinternet.com,
altond@parliament.uk,
amosv@parliament.uk,
armstrongr@parliament.uk,
best@parliament.uk,
p.bew@qub.ac.uk,
abhatia@casley.co.uk,
bilimoria@parliament.uk,
birtj@parliament.uk,
BOOTHROYD@parliament.uk,
brabazoni@parliament.uk,
bramallen@parliament.uk,
lady.briggs@googlemail.com,
butlerslosse@parliament.uk,
campbelljs@parliament.uk,
carswellr@parliament.uk,
deechr@parliament.uk,
dafydd.elis-thomas@wales.gov.uk,
errollm@parliament.uk,
finlayi@parliament.uk,
freybergv@parliament.uk,
fritchiei@parliament.uk,
greenfieldsuuk,
greengrosss@parliament.uk,
greenwaya@parliament.uk,
greythompsont@parliament.uk,
crlguthrie@gmail.com,
halla@parliament.uk,
harriesr@parliament.uk,
hastingsm@parliament.uk,
haymanh@parliament.uk,
hennessyp@parliament.uk,
hoffmannl@parliament.uk,
HoggS@parliament.uk,
HOPEJAD@parliament.uk,
howarthv@parliament.uk,
howee@parliament.uk,
hyltonr@parliament.uk,
ingep@parliament.uk,
janvrinr@parliament.uk,
jaymh@parliament.uk,
listowelf@parliament.uk,
LLOYDAJ@parliament.uk,
kakkara@parliament.uk,
lowc@parliament.uk,
LUCER@parliament.uk,
lord.mackay@scotcourts.gov.uk,
mancej@parliament.uk,
McFarlanej@parliament.uk,
marm@parliament.uk,
martinm@parliament.uk,
mawsona@parliament.uk,
meachermc@parliament.uk,
mckeem@parliament.uk,
murphyel@parliament.uk,
neubergerj@parliament.uk,
nichollsd@parliament.uk,
northbournec@parliament.uk,
oloann@parliament.uk,
oneillm@parliament.uk,
ouseleyh@parliament.uk,
oxburghe@parliament.uk,
palmerad@parliament.uk,
patel_naren@hotmail.com,
pattenc@parliament.uk,
prasharu@parliament.uk,
ramsbothamd@parliament.uk,
richardsonk@parliament.uk,
rookerj@parliament.uk,
roperj@parliament.uk,
ROSSLYN@parliament.uk,
SaltounF@parliament.uk,
sandwichj@parliament.uk,
skidelskyr@parliament.uk,
dalrymplej@parliament.uk,
SternVH@parliament.uk,
dennis@hdstevenson.co.uk,
stirrupg@parliament.uk,
sutherlands@parliament.uk,
tanlaws@parliament.uk,
taylorjdb@parliament.uk,
tombsf@parliament.uk,
walkermjd@parliament.uk,
walpolerh@parliament.uk,
warnockh@parliament.uk,
watsonm@parliament.uk 

Up awareness, Mr Cameron? Up yours!

While this is primarily a space for those with M.E., for many of us, there are comorbid conditions that affect us at the same time. For me this is Type 1 diabetes. The diabetes, diagnosed when I was 23, masked the M.E. for many years. I blamed my pancreas for all the symptoms I was experiencing until the day I finally collapsed unable to "push on through" for another second after so many years of struggling to keep working and active as my health deteriorated.

Even now, my Diabetes specialists know next to nothing about M.E. and vice versa. When an M.E. specialist insight gets a look in at all, that is.

So this Diabetes Week, I need to post about this.


Diabetes in UK Parliament today


Diabetes has been discussed by the Government today. That surely can't be a bad thing?


But reading the vacuous, uninformed comments of the Prime Minister in response to Diabetes UK's campaign for 2011 Diabetes Week, themed 'Let's talk Diabetes,' leaves me wondering.


We see more and more Diabetes Specialist Nurses (DSN) disappearing with the current funding crisis in the NHS. Along with specialised diabetes education and resource centres that were helping people to tackle their condition in the most productive, enlightened ways. 

Without these, we may well be whistling in the dark. Or waiting for the day when our monitoring equipment, so essential in keeping Type 2s in control of their condition, and all the more so for Type 1s to stay clear of coma, complications and death, are deemed a luxury not a lifesaver.

Adrian Sanders, MP for Torbay, asked Mr Cameron if he would support the campaign to get people talking about this illness, still so misunderstood even 90 or so years after Banting and Best pioneered insulin therapy in the 1920s.

The response was telling. And chilling, considering it's 2011.


The Prime Minister was quick to appear in favour of the campaign, saying:


"I think we have to find a way of encouraging more people to come forward and say there’s nothing abnormal or wrong about this." 

Within seconds I and many thousands of others were getting the sinking feeling that Mr Cameron had less than no idea that Type 1 and Type 2 diabetes are two completely separate illnesses, one auto-immune and not preventable at present, the other more directly linked to lifestyle.

He plunged in to show that his eye is only on the cost, and much more disappointingly, he is solely fixated on Type 2 issues. Who, Mr Cameron, has ever felt ashamed to talk about their Type 1 Diabetes which is in no way a matter of "lifestyle choice" but genetics? Who exactly do you think you're talking about?

On he ploughed, tilting his head as always in the direction the wind might be blowing at any given moment without any real depth of insight, reinforcing the stereotypes and sowing the old misinformation into the ears of the media and the waiting world:


'We just need to help people manage their diabetes, particularly because we want to see them have control over their healthcare and spend less time in hospitals if at all possible. 
So I fully support the campaign and I think we’ve got to look at the long-term costs of people getting diabetes and recognise there’s a big public health agenda, particularly about exercise and other things, that we need to get a hold of.'

I spend no time in hospitals as a direct result of my Type 1 Diabetes, Mr Cameron. I am responsible, like so many others, controlled as well as possible (considering M.E. which regularly hampers all attempts to maintain stable blood sugars). When Type 1s are hospitalised, it is more usually insulin-related, complication fuelled, or sitting in outpatient queues for hours at a time through no fault of our own. NOT as you seem to imply, as a result of sitting on our rears munching doughnuts, dodging salads and avoiding regular exercise.


Step One might be to inform yourself and your ministers of the real issues here: Prioritisation of funding, reflecting the complexities of the illnesses you clump together as diabetes, in much the same cavalier fashion M.E. is shoved under the vague, belittling umbrella of "chronic fatique and all that tiredness nonsense malarkey" (don't get me started, passive aggressive rant alert!)

Diabetes Week UK 2011 is 12th-18th June.

Further information and support available from:

Diabetes UK