Saturday, 31 December 2011

The BEST present for 2012!!

Just a very quick update to say I just saw the first designed copy of our report.

I printed it out and keep picking it up, a little in awe, and flicking through it.

It looks so cool! Amazing what a difference design makes eh?

And the thought occurred to me : That's it! We have a report!

Even if everything else goes wrong and every printer in the country goes down with glue poisoning or ink fever, we have an electronic copy.

That's the best New Year's present I could have had.


A year in the Life of a Diary

Being the original thinker that I am, I thought I would join everyone else in posting a list of my favourite articles from last year. A year of unthinkable excitement, horror, exhaustion and miracles.












And just because I love them so much, some cartoons :


Wednesday, 28 December 2011

Fighting Fund!

The DLA research is almost complete. We have raised £2885 which is quite simply, miraculous.

Now, I'm not a businesswoman. I'm not a politician. I don't have a nice warm office full of tech and techies. I don't have independent resources.

When I originally asked if you wanted to do this, I had no idea VAT would be added to the printing costs (like I said, I'm not a businesswoman) and I'm sorry to say that I didn't realise the funding site and PayPal would take 10% of the donations. Finally, I had no idea that meeting the incredibly tight deadlines over Xmas would add 50% to the printing costs.

There are just a few days left before I have to pay the printers.

Please, I know it's Xmas, I know times are very, very tough, but anything you can donate will help to make this a reality. Tell your friends, ask your Mum, sell the dog's blankie - but give what you can.

I've had great media interest, but that means people have to get to London on the day the report is released to give interviews - we are all unwell or disabled, so a base to recover from and de-brief will be vital. There will be transport costs, phone charges and internet time to pay for.

As this project has evolved, it has grown beyond all recognition. It has taken on a life of it's own. I am no longer producing the report, the report is producing me! It's also nearly killing me and anything I can do to pay for things I would otherwise have to do myself is becoming more urgent by the day.

It's exciting - thrilling even, to see what we can achieve - what we have achieved just by working together and believing in ourselves.

So please, RT, share, email and beg - I am beyond pride, I don't have the time. Let's have one last push and see if we can hit the £3,500 target. Let's be heard.

Let's WIN.

Friday, 23 December 2011

God Bless us Every One!

As I frantically try to tie up as many loose ends as possible before tomorrow, I couldn't log off for Xmas (actually Dave is going to lock my computer in a drawer for 3 days!!) without a few seasonal thoughts.

The last two weeks have been mind-blowing. As soon as I launched the appeal fund for DLA research, it was as though the disabled and spoonie community went into overdrive. Were we all waiting for a focus? Did we all just decide that fighting was the only option left to us?

When my DLA rejection post went viral, it was as though the universe conspired to give our campaign a boost just when we needed it most.

We raised the first £2000 almost immediately. When I checked last, we were over £2,500 and donations are still coming in. The generosity, trust and optimism you are showing is overwhelming.

Over 200 people have volunteered to be "Constituency Reps" and send the research to their MP on the release date.

Charities, media and even politicians have rushed to help behind the scenes - the response has surprised no-one more than me.

On twitter, people are springing up with their own ideas for the New Year, ways to maximise the impact of the research or get our vital messages to peers before the House of Lords return to debate the welfare reform bill in the New Year.

Lib Dem peers have received literally hundreds of messages about Time Limiting ESA.

The change in attitudes and confidence is remarkable. Something seems to have convinced you all that we CAN do this, and the more of us that believe it, the more chance there is of it coming true.

It occurs to me that this IS the Big Society Dave. This IS a Movement for Change Labour!! Yet how ironic that none of you engage with it? Clearly this is not the kind of participation you were hoping for.
We won't go away. We won't all drift off once you use your privileges to force your incoherent bill through parliament.

We've learnt that we can DO this. We can do it on our own. We can build support and friendships, we can help each other out. We can network and every day that network grows. Every day more people learn about our fight and every day they join our campaign.

If we can do this in just over a year, can you imagine, Dave, how annoying we will be by next Christmas? Can you imagine just what a PR nightmare we will become? Is it not better to just engage with us now, before it's too late? Before you take a step you cannot turn back from? Before you introduce policies that are going to see a steady stream of cancer patients at soup kitchens and wheelchair users begging on the street? Does it really have to be this hard?

We are the Big Society. We are the Good society. We might even be Alarm Clock Britain and the Squeezed Middle - it really is time you considered that. We are a constituency of millions, we are intelligent and capable. It's time you considered that too.

So guys, pour a glass of eggnog, pull up an opiate and give yourselves the most enormous gold star!!

As The Broken of Britain so eloquently remind us - "Alone we Whisper, Together we Shout."

Have the happiest, most joyous of Christmases and every single one of us has the gift of knowing that we're not alone any more.

Wednesday, 21 December 2011

Time to Choose

Good news!!! We hit the target for the research fund!! Yep, It's finally back up and running and has surpassed the £2,000 target!! Wonderful news and quite thrilling.

The research I'm co-ordinating  is very nearly finished, printers are booked, envelope stuffers recruited, designers designing, researchers burrowing, PR team talking themselves hoarse, briefers briefing, analysts analysing and we have pledges from over 150 different constituencies to personally email a copy of the research to their MP on the release date. If you would like to volunteer as "constituency rep" just leave a comment below leaving a name and constituency. All you have to do is email your MP a copy of the research on a certain date at a certain time (to be confirmed) with a covering letter asking them as a constituent to please read it and respond. (Template letter will be provided.)
You can email me on

The response has been overwhelming, and I'm confident we can put together a very comprehensive media response. Again if you would like to volunteer to speak to journalists or make phone calls, leave your name below. Again, email me on

If you live in Sussex, you can volunteer with the envelope stuffing or addressing. (7th & 8th Jan)

If you have a courier firm you can save us some money ;)

If you have design or print experience, please get in touch.

And between now and the next debate of the welfare reform bill in the Lords, (11th Jan) RT everything on twitter, post everything to Facebook and ask people to share. Make as much noise as you possibly can. Keep the emails and letters going to Lib Dem Peers and Crossbenchers

So this is my question. Would you like me to let the research fund run and use the money to maximising the impact of  the research, or shall I stick to the original target?

With more funds we can mail out more copies, make more phone calls (at the moment I'm just using three of my own phones!!) and basically pay for some of the things we would otherwise have to do ourselves, ie driving things to London, sending people to meetings etc.

I will post a full breakdown of accounts once the report has been released so that you can see where all the money went.

At the same time, some may feel that a target is a target and it is unfair to move the goalposts. Please feel free to give an honest opinion.

Please tell me what you think below.


Tuesday, 20 December 2011

The Men in Black

How totally odd my life has become.

I wrote an innocent little post about my own DLA application and then spent 48 hours in the eye of a twitter/media storm.

The DWP press office got at least 300 messages over the weekend, it was the biggest post on Labour List ever, celebrities and politicians were re-tweeting it, articles were written referencing me and twitter was flipping messages at me so quickly, I don't think I will ever be able to reply to everyone.

Some really good publicity came out of it though, and hopefully, there will be more.

The DWP scored a terrible own goal and made it worse by only issuing a very short statement claiming they "do not comment on individual cases" Immediately, twitter bombarded them with all the "individual cases" of fraud they have been quite happy to comment on. They have been asked repeatedly for confirmation that they stand by their statement, but so far, have not replied.

Meanwhile, in a parallel universe, the DLA research I'm working on gets bigger by the day. More to do, important people to bring on board, media contacts to prep, delegation to do, referencing to finish (yuck!)
Had you been a fly on the wall of my car yesterday as I tried to co-ordinate project-chaos from a Peugot 406 somewhere on the M25 while fielding calls from C4 and the BBC about the blog post, you'd have made me a nice sweet tea and sent me for a lie down.

(The irony of all this happening on a trip to hospital did not escape me - fit for work Iain Dunky-Smith??)

Anyway, I've been wondering more and more at which point the Men in Black knock on my door? Maybe I'm getting paranoid, but it's easily done, considering. I wonder if there really is a Department for Silencing Annoying Girlies. or perhaps an Operation Intimidate Bloggers that no-one knows anything about?

I wonder if, as I type, a zoom lense is trained on my washing up from last night? (Thai food take out Mr Pap) Perhaps some private dick having a little rummage in my recycling? You know that bloke I keep seeing in the blue car.....

I exaggerate. No, no, I'm sure a nice little dollop of discrediting would do it eh? I can see the headlines now - "Sue Marsh and her Jammy Dodger obsession" "Disability Campaigner has an aunt who has a sister who eats babies" "Silly girl gets facts wrong" Something like that eh? We've all seen it 100 times. Fortunately, there is zero chance of anyone finding me dogging in Camden or dressing up as a Nazi, so that's OK.

Perhaps I just need a nice little rest.

Saturday, 17 December 2011

The Very Definition of Irony

I am Sue Marsh. Disability Campaigner.

With just 4 or 5 weeks to go to save Disability Living Allowance, I am working flat out on major research aimed at protecting 3.2 Million vulnerable people from losing benefits that they rely on to survive.

I have severe crohn's disease. Probably one of the most severe cases in the country.

I have had 7 major life saving operations to remove over 30 obstructions (blockages) from my bowel.

I take chemo-shots every two weeks that suppress my immune system, ensuring that I regularly have to fight infections. Exhaustion, pain and nausea plague every single day of my life.

I have osteoprosis and malnutrition.

I have had major seizures and a stroke.

Nonetheless, I have just heard from my own Disability Living Allowance application, that it has been rejected. Completely. I will receive no support at all from DLA. Despite claiming successfully in the past, despite only getting weaker and more frail and less able to live independently, my reconsideration was rejected.

The only option now is to appeal. I will have to fill in a horribly complicated appeal form over the Xmas period, wait up to one year to go to tribunal, and probably go bankrupt in the mean time.

The state will pay thousands to hear my appeal.

The only conclusion I can come to is that if I don't qualify for DLA, no-one with bowel disease can.

The reasons they gave for the original rejection were nonsensical and didn't relate to he information I had given on my form. Today, the letter refusing my reconsideration had no details at all.

I honestly thought that sense would prevail. DLA is not (yet) ESA and decisions are usually taken with at least some logic.

So do I carry on fighting for DLA for 3.2 Million or fight for myself? There simply aren't the hours in the day to do both. There's no contest is there? The 3.2 Million must come first. The deadlines are even the same!!!

I just need some help. I cannot clean my home properly any more. I often can't look after my children or even myself. My husband takes more and more time off work to care for me. It costs me £70 in petrol every time  have to go to the specialist hospital 130 miles away from home. I must spend more on good quality food, or I just get more ill. I don't want the world, I just want to survive.

What an utter, utter waste of time and resources.

Thursday, 15 December 2011

Research Fund - URGENT UPDATE

Some of you will have noticed that it is no longer possible to makements to the Research Fund Appeal

It would seem that PayPal have a limit on received funds of £1,900!! Just £100 short of our total!! The government require them to verify accounts that receive more than this in one year

I have submitted my details, but am not sure how long it will take for the restrictions to be lifted. Sadly, I believe it will be 2-3 days, though obviously, if it happens sooner I will let you know.

Happily, thanks to your overwhelming generosity, we have plenty of funds to get on with printing, so we achieved what we set out to do. The research will be produced and when we are able to we can collect the final £100 for distribution costs.

Once again, a million thank yous - for your trust and your support and sorry for any inconvenience.


We Won Something!!!

Last night, Peers voted against the government to support Lord Best's amendment on housing benefit and spare rooms. There's a very good summary here:

The were defeated by a majority of 68!! 72 Crossbenchers, 14 LibDems and even one Conservative! (Lord Newton of Braintree, we salute you!)

Here are the Lib Dem Peers who voted against the government :

  • Eric Avebury
  • Brian Cotter
  • Archy Kirkwood (former Chief Whip in the Commons)
  • Veronica Linklater
  • Ken Macdonald
  • Sue Miller (former Liberal Democrat Home Affairs spokesperson)
  • Roger Roberts
  • Ros Scott (former Party President)
  • John Shipley
  • Trevor Smith
  • Matthew Taylor (former chair of the party’s Campaigns and Communications Committee)
  • Celia Thomas
  • Jenny Tonge
  • Geoff Tordoff (former Chief Whip in the Lords)
Ben Stoneham abstained.

In plain terms, it means people in social housing with a spare room cannot be forced to downsize and the government have to go away and come up with a better plan. This is particularly important for disabled people who may have had adaptions made to their homes to live independently or who need a second room for a carer. 

The Lib Dems originally stopped the government from cutting housing benefit by 10% for the long term unemployed  so this is clearly an issue they are prepared to fight on. It's too early to tell whether this is just an extension of their commitment to protect tenants, or part of a broader willingness, to take policies within the welfare reform bill on merit. 

That's all we ask, after all. That EVERY policy, every proposal is discussed on MERIT and peers vote accordingly. 

Either way, it's a welcome change :)

**Update : The Research Fund raised a spectacular £1,900 so far in less than 24 hours. Please keep donating and spreading the word, thank you so much for your generosity. 

Wednesday, 14 December 2011

Research Fund - Fighting Disability Cuts

For months now, I have been working on vital research. There are only a few of us, all unpaid, all seriously unwell or disabled. 

We have no funding, we are not a charity or an NPO. We do what we do because we are desperate. Because it is our lives being decided in Westminster, our futures in the hands of remote politicians. 

We do it for the people who can't fight for themselves, for those who may not even know what is being done in their name. We do it for the people who have shared their stories of fear or desperation or hardship. 

We have given our time and what precious energy we have to presenting evidence and testimonial to politicians who have been all to often, unwilling to listen.  

Now, time is running out. We have just a few more weeks to present our research to MPs, Lords, the media and the public. We need to get our work to the printers, we need envelopes, we need stamps. We want to make sure that every parliamentarian has the evidence in front of them before they vote for the final time, before they pass the welfare reform bill. 

The vote will abolish the Disability Living Allowance, I must try to stop that. The voices of the sick and disabled have not been heard. I have to change that. People are suffering every day. 

Please, give what you can afford. Do NOT give more than you can afford. £1 will get us closer to our target. £3 will pay for 6 MPs or Peers to see our work. £20 will mean that 100 parliamentarians with the power to change the bill have all the evidence they need to make a balanced decision. 

I've never asked you for money before. I wouldn't be asking now if I didn't think this could make a real difference. 

Thank You. 

Click Here to Donate

Update : WOW! We have already raised nearly £600 in less than 3 hours!! Thank you all so very very much. I wanted to share some of the comments that people have left as they are so very touching. 

"I'm sorry I don't have the time or the spoons to campaign with you guys anymore. It hurts me that I can't, but I've been working since May (self-employed, choosing my own hours, not too much a week, pretty much a dream job for a spoonie) and it's been draining me far too much. So here, have some money, and please use it to keep fighting for the DLA that allowed me to start working in the first place."

"I thank you with all my heart for the work you do especially as you are so ill yourself. No words can express my appreciation. (Partially sighted, chronic cervical spondylosis and ESA time limit anxiety sufferer!)"

"Now we see the true Big Society in action. People who despite being ill and impoverished are helping each other. I can only give £5 but I feel it will help - not only financially but as a symbol of the strength we have when we support each other and work together. I am so proud to be a part of this and to see people's kindness and generosity. Thank you."

"Glad you finaly asked for help, lets us feel like we are also supporting even if we cant do as much as you!"

"I've followed your campaign everyday since the beginning. I don't have the energy to get involved so I am glad to have this opportunity to do a little bit to help with what you do."

Tuesday, 13 December 2011

DWP - No Hawkers or Circulars - (Not Even Xmas Cards from Disabled People)

There is no other explanation. The DWP are simply aiming to score as many own goals as they can before Xmas.

Today, a delegation from the Hardest Hit including the RNIB and UK Disabled People's Council attempted to deliver a Xmas Card to the Department for Work and Pensions signed by nearly 24,000 disabled people, their carers, families and friends.

Whoever they tried to hand it to at the DWP (Scrooge?) repeatedly refused to take it!! Suddenly, Downing Street were involved, The Disability Alliance, Lords on Twitter and any other number of influentials went into a spin.

Disabled groups reacted with astonishment and outrage. Maria Miller, who cannot open her mouth without stuttering the claim "We work closely with disabled groups" (Though there is no evidence of this whatsoever, some say she has just been wrongly programmed, and they are ironing out this software glitch.....) wondered for a while if her cover had been blown.

Rest assured though, the DWP say:

 Re  petition – simple misunderstanding. DWP always happy to accept any such petitions. Spoken to Disability Benefits Consortium inviting them back. We work closely with disability organisations and disabled people 

Phew! That's OK then, cos for a second there, we thought they weren't interested in hearing what we have to say. Oh wait.........

Now it's Real. First Cancer Patients, Now Government slash benefits for Disabled Children

Last night, the House of Lords failed to support an amendment put down by Tanni Grey-Thompson, the most successful paralympian of all time, to protect the benefits of disabled children once Universal Credit is introduced.

You can read more here but effectively, under universal credit, all but the most profoundly disabled children will only get half as much support. Child Tax Credit additions for disabled children will fall from £52.21 per week to £25.95 per week - a loss of £1366 per year, or £20,000 over the course of a childhood.

You might wonder what possible argument a government who promised to "protect the most vulnerable" could possibly make for this change. I myself was fascinated to see how on earth they had justified throwing disabled children to the wolves.

Ready? OK, if they didn't betray disabled children, it would just have to be disabled adults. After all, disabled children have parents to look after them. What's more, if they didn't cut money used to buy wheelchairs and incontinence pads for disabled children, they wouldn't be able to afford to address the hideous failures of ESA (Employment and Support Allowance or sickness benefit) and ensure that all those who qualify for long term support, get it.

Could there be a more disgusting example of divide and conquer? Each man for himself. The image of a Victorian gent throwing a handful of pennies on the floor and leaving the cripples to fight it out amongst themselves comes to mind.

And remember, this is no longer theory.

I've been writing about these issues for 18 months now, sadly my blogs have often contained doom and gloom predictions of horrors to come. Well last night they started to come in a first blaze of in-glory. The Welfare Reform Bill is now at Report Stage in the Lords. These votes will almost certainly decide what becomes law and what doesn't. For disabled children, now it's too late.

Shame on us.

There is one more session before Xmas. Then 4 sessions after Xmas, then the final no-going-back vote to pass the bill. There is still time to lobby peers. There is still time to stop the time limiting of ESA. There is still time to oppose PiP and abolishing Disability Allowance. There is still time to fight Clause 52 and housing benefit changes that will leave thousands of sick and disabled people at risk of homelessness.

In a week where the government suggested all cancer patients undergoing chemotherapy ought to be assessed to see if they can work or not, I can only wonder where this will all lead. I can only hope history is no guide  the future

If I can find any tiny silver lining, it is that we only lost by 2 votes. That is the closest vote I have seen so far.

2 votes. 2 Lords. 2 letters, 2 emails, 2 tweets.

There is still all to play for, but sadly disabled children just fought the last stage of their fight. And lost.

Sunday, 11 December 2011

Cameron's Terror - No Election needed if Coalition Fails

The blogosphere and Twitterati are fizzing and sparking with excitement today.

It seems Mr Clegg and Mr Cable are furious about the EU fiasco and might even stamp their feet a bit.

Clearly, this has led to much discussion of elections. Will Hutton in today's Observer now feels the coalition cannot possibly last until 2015.

I have no opinion. A party that has already moved so far on issues that would have seemed impossible before the election is no longer one I can possibly read. They are already supporting an economic plan that is failing, just as they said it would before the election, a tuition fee rise that is hurting, just as they said it would before the election and the privatisation of the NHS (again something they opposed before the election).

Nonetheless, the point of this post is to share a little democratic procedure.

There would not need to be an election if the coalition falls apart. In fact it is quite unlikely that there would be. 

The fixed term parliament act, passed on 15th September, 2010 as part of the coalition agreement, changed the way elections can be called. This is from the parliament website :

"There are two provisions that trigger an election other than at five year intervals.

  • A motion of no confidence is passed in Her Majesty's Government by a simple majority and 14 days elapses without the House passing a confidence motion in any new Government formed

  • A motion for a general election is agreed by two thirds of the total number of seats in the Commons including vacant seats (currently 434 out of 650)
To translate, if Clegg, Cable et all jump ship, all parties have 14 days to form another government. Effectively, Labour and the Libs with a few "others" can form a government and no election will be called. 

To simply call an election randomly, and dissolve parliament, the coalition changed the rules. Now, 66% of MPs would have to vote against the government in a vote of no confidence. Translating this means that, effectively, it is not possible in practise to get the required vote. It would mean every Labour MP, every LibDem MP, every "other" AND a further 91 Conservative MPs prepared to vote against their own government.

So, to all the commentators and talking heads arguing over whether the Conservatives could win a majority now or indeed, whether Labour could, it is irrelevant.

Liberal Democrats could simply leave the coalition and form a government with Labour, the Greens and others. All they have to do is vote against the government in a vote of no confidence.

Whether they would or not is another matter, but according to law, that is the process. 

It seems almost no-one knows this. All are discussing a possible election.

One things is utterly sure however. Mr Cameron knows it. Mr Clegg knows it. And so does Mr Miliband. 

Saturday, 10 December 2011

Time Limiting ESA - Template Letter to Lords

Yesterday, I asked you all to write to a Lib Dem peer and plead with them to vote against time limiting ESA to just one year.

Template letters are certainly less effective - many parliamentarians won't open  more than one or two of them. However, they are better than not writing at all. For every peer who receives 5, 10, 50 template letters, at least they get to see the strength of feeling people have over an issue.

If you don't have the confidence to write your own, please use this one. Peers might also remember that I write for disabled people. Many cannot write a letter themselves. Due to physical or mental disabilities, I have often had comments from those so very grateful that a template letter I have provided allowed them to engage democratically.


"Dear .........................

I am writing to you in the hope that you will vote against time limiting ESA to just one year in the coming welfare reform bill Report Stage and Third Reading.

-700,000 people with serious illnesses and impairments will be affected by this policy, many losing any right to an independent income.

-The means test is set at just £7,500 per year, meaning that a partner must support an unwell or disabled loved one if they earn more than this.

-Families already overwhelmingly living in poverty will lose £4661 per year. This is three times as much as higher rate taxpayers will lose in child benefit.

-This policy only affects working families and savers as it only applies to those who have contributed NI or have savings over £6000.

-It is a disincentive to work  and will only encourage families to break down

-The only justification ministers have given for this policy is that "We can't afford it" Sick and disabled people with limited capability for work are conflated with jobseekers as ministers claim ESA must be brought into line with JSA

-Ministers admit that 94% of those affected will not have found work by the end of the year. They also insist that it is irrelevant whether or not they have recovered.

-People with serious, lifelong, and degenerative conditions will all be affected by this. People with MS, Cancer, Parkinsons, Bowel Disease, Kidney Failure, Heart Disease, Lung Disease, Schizophrenia, Bi-Polar and many many more conditions will lose benefits, left in limbo until they are judged unable to do any kind of work at all,.

At your annual conference this year, Liberal Democrat members voted overwhelmingly to oppose an "arbitrary time limit" on ESA. Please, please, stand by the wishes of your grassroots and of your party and oppose this cruellest of measures.

We are relying on you to help us. Only Liberal Democrat peers can provide a majority and ensure that a one year time limit on sickness benefits is not made law. Please, you promised to protect the most vulnerable and if ever a policy hit the most vulnerable the hardest, then it is time limiting ESA.

Many thanks



Here is a link to Lib Dem Peers. Simply click on it, pick a letter of the alphabet at random, and copy and paste in the letter. 
The more you can do, the more we can persuade. Thank you.

Finally, please keep up the pressure and RT, share on Facbook, email to friends and feel free to cross post this. 

Friday, 9 December 2011

Time Limiting ESA - We MUST stop it

It seems that the Conservatives are simply not willing to give an inch on Time Limiting ESA.

Just to be clear, this means that if you have worked and paid national insurance contributions you will face an assessment. If that assessment finds that you are indeed unwell, but may be able to do some work at some point, you will only qualify for support for a year.

At the end of that year, no matter how ill you remain, if you have a partner who earns just £7,500 or more, or limited savings, you will lose all ESA. All of it.

Those with long term, serious illnesses, mental health conditions and learning disabilities are likely to be the worst affected. Sickness benefits as we know them will become a thing of the past. Just 6% of new claimants will qualify for long term support, the rest will have just one year.

I have written about time limiting extensively here (click for article)

The government accept that 94% will not have found work at the end of that year. They accept that they will not have recovered. They simply say "We can't afford it"

The only way we can now stop the government from going ahead with this most horrifying of policies is for Lib Dem Lords to vote against it. 

Earlier this year, Lib Dem grasroots members voted for a motion and amendment at their conference opposing an arbitrary time limit for ESA. The vote was overwhelmingly in favour.

Here is the amendment in full :

After C. (line 25), insert:
D. That vulnerable cases like this, where a welfare recipient’s income is threatened ,should qualify
for free legal representation.

Delete 2 (line 35) and insert:

2. Liberal Democrats in Government to oppose an arbitrary time limit on how long claimants can
claim contributory ESA.

In 3. (line 36), after ‘representation’ insert: ‘and expert advice, and for Government to reconsider
the exclusion of welfare benefits casework such as this from the scope of legal aid.

After 3. (line 36), add:
4. A presumption that ESA claimants with serious and uncontrollable life-threatening conditions
should be allocated to the support group rather than the work related activity group.

5 A review of ATOS performance in delivering the Medical Services Agreement contract with
DWP in respect of the quality of medical assessments.

6. Effective contract compliance for contractors carrying out ESA eligibility assessments to avoid
poor performance, and a presumption that in future ESA eligibility will be carried out by the
public sector or non-profit organisations.

Once this vote was carried, opposing the time limiting of ESA became Liberal Democrat policy.

Today, I'm asking all of you - Liberal Democrat or not - to write to a Lib Dem peer and beg them to oppose the one year time limit. Here is a list of Lib Dem peers

Simply click on a letter at random, pick one and write to them. Beg them. Explain it to them. Feel free to send them my articles. Remind them about their conference pledge. 

They're our only hope. If they support the Conservatives on this, despite the wishes of their members, 700,000 people will be affected. People with Parkinson's, Bowel Disease, MS, Cancer, Heart Failure, Kidney Failure, Lung disease, Schizophrenia, Bi-Polar and any other condition you can think of. 

Please, write today. Then write again. Pick another peer and then another and keep writing until after Xmas. 

Very early in the New Year, Lords will vote on this issue for the final time. It is only this vote now that stands between time limiting ESA becoming policy. 

Please, if you've ever sent one of my letters, every RTd an article because I asked, every written to your MP, every written a blog post or an article, please, do this. Keep doing it until the day of the vote. Tell everyone and ask them to write too.

The welfare reform bill is almost law now. We don't have very many opportunities to make a difference. Let's make a difference over this. 

**Feel free to re-post, share, RT and generally make sure that everyone knows, thanks. 

The following articles may help:

Thursday, 8 December 2011

NHS Waste - Ask the Patients

Funnily enough, I didn't set out to be a welfare warrior.

This blog was actually supposed to be about the NHS. I hoped that my 28 years of NHS in-patient  experience might provide some solutions for positive reform. If you want to know where the NHS wastes money, just ask us patients.

As of yesterday, my medical team have advised me to stop taking the chemo-shots. They don't seem to be doing anything to control my crohn's disease, and because they are such strong immuno-suppressants, I get every last sniffle the boys come home from school with and diligently nurture them into a chest infections or flu.

I've been ill for months and I'm getting so run down it's now dangerous.

Unfortunately, I've just had a delivery of the injections.

They cost the NHS £1000 each. Yep, every fortnight, I plunge a cool grand into my tummy via syringe. That's 24k a year.

I have 4 innocent looking little needle packs glaring at me from the fridge, sending my natural thriftiness into spasm. That's 4K of NHS budget. In a minute, I will have to take the boxes from the fridge, open each one, and squirt the equivalent of my entire yearly income down the toilet.

No-one else can use them you see as they might have been tampered with. (They weren't) Or stored at the wrong temperature. (They weren't).

They can't go back to the manufacturer or the hospital to help some other disease riddled wretch. I can't recycle them in any way. They won't even make very nice Xmas decorations.

Clearly there are simple solutions : 1) Don't send me four at a time. 2) Allow them to be used by someone else.

But for these 4 shots, there is nothing else to be done. I can hardly bring myself to do it.

When I was in hospital last time round, I was fed by central line with something called TPN (Total Parenteral Nutrition) Setting up the bags of feed is a devilishly tricky procedure and the feeds themselves cost a fortune. Around £1000 and you need one every day. They too must be refrigerated at the correct temperature and only have a 24 hour shelf life. They are mixed specifically for each patient's nutritional needs. Custom made, pre-digested enzymes and lipids, yum.

On three occasions my TPN went to waste. That's another 3K right there. One went to the wrong ward, one was left out of the fridge all night and one just didn't get put up in time.

If I were in charge of the NHS, it is these utterly senseless puddles of waste that I would crack down on. Surely there's a few billion to be saved in that idea George?

Wednesday, 7 December 2011

Did Freud "Mis-Speak"? Hansard think so. Do you?

On Tuesday 8th November, the welfare reform bill Grand Committee debated Time Limiting ESA to one year.

Bns Hollis (Lab leader) pushed Lord Freud (Gov sponsor of the bill) to provide a financial breakdown of how much the measure would cost.

In reply, Lord Freud seemed to say, quite clearly,

"Well my Lords, you can see the process here clearly as you move through the bulge of effectively, stock, taking on the transfer from IB to ESA....."

As you might imagine, twitter (we were live tweeting the debate to a wider audience) immediately exploded with indignation. "Did he just call us STOCK?" one person asked and many tweets followed, astounded to hear us referred to in such inhumane terms.

Stock - what does it make you think of? Cattle? Commodities? Perhaps when discussing human beings there are worse connotations.

Well, it would appear that the Hansard report has this transcript,

"My Lords, one can clearly see the process here, as you move through the bulge, of stopping as you take on the transfer from IB to ESA."

This now makes no sense at all. I am assured that the job of those transcribing for Hansard is to make sense where they believe someone has spoken in error or where the grammar is not clear. With this in mind, perhaps they simply could not discern Freud's meaning and changed it to this garbled phrase.

However, it seems rather coincidental that a word that caused such offence, such fear and shock, should be the very word unavailable for posterity.

I'll leave you to judge. You can watch from 17.43 and decide for yourselves.

Monday, 5 December 2011

Care in the Community

Nothing politicised me more in the 80s than Care in the Community.

My brother was a rising mental health nurse star at the time and talked of little else for years. My family heard in graphic detail how Institutions up and down the country were closed and residents placed in the community with little or even no transitional support.

The idea was important and progressive, but as with so many policies, the implementation was often shocking.

DLA - Disability Living allowance was the scheme put in place to provide for the daily living costs disabled people faced to allow them to live "in the community" at all.

The Independent Living Fund provided extra support on top of DLA to just 21,000 of the most profoundly disabled people in the country. It amounted to an extra £300 on average, per month to allow someone to live in their own home,  saving the state many thousands more on care they would otherwise have had to provide in residential centres.

Today, this government are scrapping DLA and the Independent Living Fund (ILF). DLA will be replaced with Personal Independence Payments (PIP) and the numbers claiming will be reduced by 20%. They are cutting the lower rate of DLA care payments altogether. It is not yet clear whether or not the ILF will be replaced at all.

Under Universal Credit, Iain Duncan-Smith's new flagship welfare reform policy, seriously disabled children will only receive half the amount they do now.

Children disabled from birth will no longer receive contributory entitlement when they reach adulthood. This will seriously limit their ability to live independently from their families.

Sickness benefits for those who have paid into the system will be limited to just one year for most, limiting the ability of those with long term conditions to live independently, making them utterly dependent on family or a partner to survive.

All of these cuts are proposed by Mr Duncan-Smith's department.

Today I read that Mr Duncan Smith admits that Care in the Community was a "£100 Billion Failure"

Those with mental health problems, he says, did not get the community support they should have done.

Well, Mr Duncan-Smith this is horribly true, and nor did the physically disabled. Your proposals, when taken together, represent the single biggest attack on independent living to them in recent memory.

I haven't even mentioned the cuts to social care happening up and down the country. The single biggest threat to dignity and support the disabled have faced.

Mr Duncan-Smith your weasel words on Care in the Community belie your actions. Cutting almost every vital aid to independent living will only send us back to the 50s. You acknowledge the problem. Now address it.

DWP get sums wrong on ESA - By 1 Billion!!

DWP's billion pound mistake on sickness and disability benefits: government forced to revise up forecast spending on ESA

The independent Office for Budget Responsibility has said that spending on Employment Support Allowance will be £1bn higher in 2014/15 than previously forecast by the government. It says that this is because fewer people are expected to be assessed as 'fit for work'  and more people are expected to be given unconditional support than the government had previously assumed.

This is a major revision to DWP's earlier forecast of £9.7bn ESA expenditure in 2014/15.

The OBR says ''ESA changes have resulted in an increase in expenditure of £1bn by 2015/16 *

They go on  to say 'The latest administrative data suggests that fewer people than previously assumed will be judged 'fit for work 'as a resut of the initial ESA work capabability assessment and reassessment of incapacity benefit cases, and more will be placed in the support group.This accounts for four fifths of the increase.'

That sounds a bit wonkish doesn't it? Trust me, this is fascinating news! What it means is that the government has to find a billion pounds more than the Chancellor included in his calculations to spend on Employment Support Allowance. And what that means is that a billion pounds more has to be spent on ESA mainly because the DWP will not be able to find as many people fit for work or 'work-related activity' through their work capability assessments as they'd claimed.

So although they aren't saying this explicitly, the DWP would seem to be admitting that their previous assumptions about how many people were able to work were grossly exaggerated. This implies that thousands of sick and disabled people have been wrongly denied ESA over the last three years and thousands placed in the Work Related Activities Group who should have been put in the Support Group and given unconditional support

It's not hard to see the reasons for this change. Since the first report of the Harrington review of the WCA last year, many more people have been placed in the ESA support group than previously, and fewer found fit for work. It is clear now that the WCA has been a disaster, driven by lazy assumptions about claimants and spending targets plucked out of the air.

However, the government is still going ahead with its plans to time limit contributory ESA to just 12 months for people in the WRAG and to deny contributory ESA to people who have been disabled from childhood.

*in fact, their tables show the increase is £1bn by 2014/15 p.146-7

**x-posted from

Sunday, 4 December 2011

Welfare reform will reduce poverty? Purleeease

This is just a little memo to myself really.

According to the government

""Our reforms will move 350,000 children and 500,000 adults out of poverty."

This is clearly such utter twaddle that I wanted to make sure I could come back to them in 2015 and remind them of yet another lie. 

Perhaps no coincidence that just yesterday I read that they were thinking of re-defining poverty altogether. After all, if you haven't got a hope in hell of meeting a policy objective, the best thing to do is move the goalposts eh?

Dear UN : SOS!!!

The quite excellent John Pring at Disability News Service dug up this murky little nugget of breathtaking cheek from our delightful coalition.

It seems that the government had to prepare a report for the UN disability convention. Apparently, the report was meant to describe

"measures that are being taken to implement each of the articles of the UN Convention on the Rights of Persons with Disabilities."

However, in a dazzling piece of collective amnesia, our very own UK government didn't seem to think it necessary to mention the eye-watering level of cuts to disability benefits, services and support. 

Despite an "Initial Report" running into a zzzzzzzzzingly epic 126 pages and an even more lengthily off-putting "Annexe" of 167 pages, there appears to be nothing at all discussing the impact £9.2 billion of cuts will have on disabled people's "rights"

One might think that up to 600,000 people losing Disability Living Allowance, for instance, might, you know, impact on how Disabled people erm, Live? That abolishing the Independent Living Fund might, well, have some impact on how Independently we can Live? That cutting Access to Work might make it, erm, harder to, well, Access Work? Cutting Social Care might make the care we receive a little less Social? Capping housing might, well, lead to some people losing trifling little things like, THEIR HOME??? Never mind the astonishingly sinister Disability Denial of ESA, where nearly 2 million people will miraculously be found "Fit to Work" after all, simply by pressing a few buttons on a LIMA computer screen? 

I can only hope that whereas misinformation, distortion, omission and double-think seem to be perfectly acceptable in the UK, the UN will take a rather more "Real-Life" view of our rights. 

SOS UN : UK disabled people here! You can skip the 293 pages of fantasy our government just sent you if you like. Send food packages!! Send tents! Send Peacekeepers! 

Friday, 2 December 2011

Government Cancer PR Disaster

Oh yes, I forgot to say.

You know how I often point out the fact that if you have IV chemotherapy you qualify for unconditional ESA support, but if you take chemo orally, you don't?

Yup, it's that tough. Despite the fact oral chemo or radiotherapy can be just as physically devastating as IV, one meant you got unconditional support, the other meant you had to attend work related interviews!! Yup, seriously. No, I'm not making it up.

As you can imagine, Macmillan Cancer Support campaigned pretty hard on this issue, pointing out that the system was clearly unfair.

Well, after due consideration, the government appear to agree. It is, they conclude, clearly unfair that the scrounging IV chemo and radio patients are getting off scott free. Therefore, the government suggest they will all now have to face work related interviews.

Yup, seriously. Yes, you did read that right.

Anyone undergoing chemo or radiotherapy for cancer should not be considered unfit for work, according to the government. (Unless they have less than 6 months to live, great ole softies that they are)

I can't even think of a snappy conclusion. I literally do not know how to put that into words.

If however, the government are actively looking for ways to create the biggest PR disaster of all time, then surely this will be a top contender?

Feckless Parents - Oh IDS, you Tool!

Today, a headline in the Telegraph screams :

"Feckless parents would only spend extra benefits on themselves, says Iain Duncan Smith"

He goes on to argue that giving benefits to parents of children living in poverty is self defeating as it only re-enforces dependency, creating yet more of the "perverse incentives" this government are so convinced exist. 

Immediately, the entire country sees Wayne and Waynetta, blowing their cigarette smoke into a cot, spending their giros on cheap booze and a wrap or two of coke. Perhaps reclining in front of their 50" plasma screens with a nice cardboard pizza and a couple of tinnies. 

My HUUUUUGE issue with this kind of angle is the millions of "good" "hardworking" families who never had a fag in their lives. Never go on holiday. Never go to the cinema. Never have money for the school trips all the other kids go on. Many work, but their wages still do not insure them against poverty. 

All the while politicians just see an amorphous mass of scallies, all the time they allow headlines to reinforce their prejudice, we will continue to see "scrounger" headlines, continue to see rising hate crime and division.

Presumably, ministers will continue to be "perplexed" at just why the media print things in the way that they do. 

Thursday, 1 December 2011

So how am I?

I'm ill. Three little letters. Ill. A word so short, you might miss it if I say it quickly. A word so subjective, you will not know what I mean.

Bit-of-a-sniffle ill.
Depressed-and-hopeless ill
Need-a-bit-of-attention ill
Would-death-not-be-better ill

Which one did you think of? What does ill mean to you?

I start from a base of Already-pretty-damn-ill. But that's my "fine." I run to the loo, wearing the hall carpet down as I go. 5 times, 8 times, 12 times a day or more. It makes me weak. Dizzy. Exhausted. Sometimes, after lunch, the need to just sleep is so strong I try closing first one eye, then the next in shifts. I shake as I make my toddler his lunch. Stumble as I carry it in to the lounge. Stars dance and float in the corners of my eyes as I bend to open the washing machine or haul myself wearily from the car.

Occasionally and embarrassingly, I shout out in pain. I might be in a restaurant or a cinema. My vocal chords would appear to get no advance warning. Otherwise I forget the pain is there. A dull backdrop to school nativity plays and boring committee meetings.


But when does "endurance" become "normal"? Oh...... years ago. Sometimes, I spend an hour or so, my face perplexed, wondering just why I've had such a bad day. Friends, with the luxury of objectivity ask me gently if I was up in the night. I nod. "When did you last eat - and keep it down?" I think.....

And the treatments. A parade of pointless poisons. In my case anyway. One made me vomit all day, every day. Another gave me headaches so bad, my consultant feared they were the precursor to a brain tumour. Steroids gave me osteoporosis. Innocent little white drops, dissolving my bones. A calcium sacrifice to the Great Intestines, because nothing matters more than keeping me alive. Bowels rule everything.

And the last option. The real red-button treatment. Sterile little packs, delivered to my door. To be refrigerated. Sharp little needles full of stingy, cold, syrup that I jab into my belly every fortnight. Like a little bit of AIDS. They weaken me. My pesky little T Cells that are supposed to defend me from germs just won't take it easy you see. In my body, they never switch off, turning on me, attacking me, gnawing away at me until something bursts or fills with poison.

The pre-filled syringes make these T Cells lazy, encourage them to take a day or two off. Trouble is, all the other germs get the same memo. A cold, a flu, a chest infection, a virus. Like teenagers who's parent's have gone away for the weekend, the message spreads - Party! Sue's immune system, don't be late!

Which is worse? The constant crohn's or the constant infections? Does it really matter? The results are the same. Dave still has to respond to my SOS when I can't remember my own name through the fever and can't physically get to the kitchen to make the boys their lunch. He still has to risk his own job and rush home to care for us all.

I'm still sitting here, all alone, propped up on pillows, too weak to even have a bath. I'm still looking at the same bedroom walls, too sick to get up and draw the curtains, to let a little light flood in. I'm hungry and a bit cold, but there's still no-one who can wave a magic wand, drop their own lives and come and make me a cup of tea or a hot water bottle.

I'm still sad. I still feel defeated and a bit useless.

I have to tell you today, because tomorrow, or whenever this latest viral-intruder stops thrashing me in his jaws, I will report breezily that I'm "not too bad". I'll look a little thinner, my eyes a little darker.

But today, today I can't even muster denial. Today I know that it won't be long before the bedroom-days get more frequent than the school-run days. Today I realise that my ever constant family and friends are already planning hospital contingencies and compassionate leave. Today I wonder.... just for a flicker of a second..... how long my frail, ravaged little body can stay on the right side of "miracle" Tomorrow, I will believe the answer is forever.

Today, I can't pretend that my 7 yr old is just going on a "play date" after school. No, today, my mind tells me oh so clearly that I'm using up another favour, calling on another chunk of goodwill. Today, I can't pretend that my toddler going to nursery all day is just an "adventure".

No, today I can see that I'm losing the battle. Again.

And of all the ironies, of all the thoughts I am left here with, alone with too much time, I remember that this is a battle the most privileged, the most powerful don't even believe exists. It is a battle politicians believe can be overcome. If I just tried a little harder, dealt with my destructive "illness behaviour," I too, could be a fully paid up, financially productive member of their version of society.

Now isn't that bizarre? And even a little bit sinister?