Attack of the Spoon Pixies

The term "spoonie" is a familiar one to many people working in disability and chronic illness circles. Put simply it describes anyone who experiences debilitating fatigue and has had to learn to continually plan and pace their daily activities. The name comes from the essay "The Spoon Theory", and is an excellent way of explaining fatigue to relatives or friends who just "don't get it"!

In essence energy is represented by a number of spoons. While people who are not ill have unlimited amounts of spoons, for some unknown reason "spoonies" only have a set amount each day. Every activity, be it getting dressed, eating, or going out uses up a certain amount of them. The harder the activity, the more spoons are used up. Once there are no spoons left, you're stuck for the rest of the day! Hence why a "spoonie" has to be so careful and plan their days in advance.

Some spoonies are even more unlucky and their number of spoons varies considerably. Some days they have a lot of spoons and can do a reasonably amount. Other days they have hardly any spoons at all.

Why is this?

We have given this much thought and finally have the answer everyone has been waiting for.

SPOON PIXIES!

Spoon Pixies belong to the same species of creatures as the Tooth Fairy and are a cousin to the Common Garden Gnome.

Like the Tooth Fairy they visit at night when you are asleep.

While the Tooth Fairy takes away a tooth and leaves some money behind, the Spoon Pixie is a much nastier piece of work. It steals spoons but leaves no trace of its visit.

This is why it has (until today) left both patients and doctors completely baffled.


While we cannot prevent visits from the Spoon Pixie a number of suggestions have been made.

1. The first of course is to make sure spoons are carefully locked away before going to bed. 
2. Secondly, it may be possible to stop the Spoon Pixie. Leaving sticky tape beside the bed may prevent it from reaching its goal. 
3. Finally, a much more daring course of action being researched is to actively bribe the Spoon Pixie. In this way it may even be possible for the Spoon Pixie to return some stolen spoons! Leaving coins and shiny objects under the pillow or by the bedside *may* entice the Spoon Pixie into a "spoon exchange". Research in this area is also ongoing. 

We are open to more suggestions.

Please don't come in

EDIT: August 27th 2013.
Jamie Oliver has today launched into a tirade against "poor" families with large TVs. This sadly once again makes this post relevant.

_________________

I hate strangers coming into my flat.

I live in a fairly roomy ground floor 2 bedroom flat. It took me quite a long time to find as I needed somewhere which was wheelchair friendly and large enough for me to get around in.
At the time I was still working and so I wanted it to be close enough for me to get to the office in my wheelchair as public transport would have been a disaster!

I have now lived here for about 8 years. My landlord is a good one and the property is kept in extremely good condition and has been repainted twice since I moved in. I am extremely lucky as the rent was very low from the outset and hasn't gone up much over the years. My neighbours above me pay around £100 more per month for exactly the same flat. (I'm hoping my landlord doesn't find out!).
After 2 years (bureaucracy!) the flat was finally adapted to be almost fully wheelchair accessible (rather than simply wheelchair friendly) with, for instance, a nice level entrance instead of bumping myself at speed up a step with a kerb climber!
Although semi-furnished, while I was working I bought some reasonably nice furniture as well as some luxuries such as my tropical fish tanks, a nice big TV, a games console, a big laptop and a blu-ray player (I'm a bit of a techno-geek!).

I was lucky that I had a well paid job so I was also able to put a bit of money aside during those years so that should any of these things break down, or should I need to replace more essential things like my electric wheelchair, I should be able to do so at least once.
I am also in the very lucky position that other essential items such as cookers, washing machines, boilers etc are the landlord's responsibility, not mine.
The flat is kept clean and (sort of) tidyish thanks to the help of my carers I employ through the direct payments scheme through social services (although I would note that I have to contribute 100% of my so called "disposable income" from my benefits towards my care, which comes out of my DLA care component and ESA disability premiums).

However my illness continued to progress and my disabilities worsen. I eventually had to give up my career 2 years ago and go on benefits. My low rent really came in useful here as it meant that my property still came below the upper limit for LHA (replacement of housing benefit) even with recent changes. (Had I been living in my upstairs neighbours' flat, I would have had to move as LHA would not cover their rent).

But this is where things all start to go a bit pear shaped.
Newcomers to my flat are not at all impressed.
It is far too "nice" for someone on benefits, even disability benefits.
They are perhaps unaware that it is the landlord, not myself who pays for the decorating of my flat.
It perhaps doesn't occur to them that I NEED more floor space and that my electric wheelchair cannot negotiate most properties. Furthermore if I DID move social services would have to pay out to readapt whatever property I moved into with new ramps etc...
They certainly don't know how much my rent is, nor that for whatever reason it is very low and I am simply very lucky.
It doesn't matter, nor would it probably occur to them that not one of the expensive items here were bought with benefit money and that I would NOT be able to buy these things today or if I had been on benefits all my life.**
In fact it usually does not occur to them that I may not have been on benefits all my life but worked until just 2 years ago. Total shock and surprise normally greets the "revelation" that I used to have a "proper" job.

I very unusually had to use an agency carer today I had never had before. She said "what a nice flat" I had. After looking around she pointed out that although I was sick "I had a lot of expensive things around me". She then asked if I was on benefits and added she "assumed I don't work?..."

THAT is why I hate new people coming to my flat. I am now ashamed and feel the need to justify having the things I do, even those I worked hard to get and bought with my own wages.

This particular carer was perhaps out of line, but isn't she just saying what many people think but just don't say?

It keeps me wondering what people are saying behind my back.
Paranoid? Maybe. Realist? Probably.


**Not that I think people who have always been on benefits should not be allowed to budget and save up for something nice, but in my case I would certainly have budgeted very differently and probably bought slightly different items on the income I am on today.

Long in the tooth

I think I'm going to lose a tooth, or maybe two.

My only chance to avoid this will be to drag myself to the dentist on Monday. Unfortunately I have started a flare and have been flat on my back in bed for the past 5 days. I can't sit up for more than a few minutes, am in horrible amounts of pain, even shakier than usual and other symptoms are playing up which I don't care to mention here. Right now I can barely get to the toilet, let alone out the front door.

Another thing to consider is that dental work is far from easy for me. I have to go to the hospital for it because in the words of my last "real" dentist: "we can't do any treatment on you here because we don't have resuss equipment". This hasn't bolstered my confidence much. Furthermore I have to increase my steroids before even routine treatment such as fillings and regularly have flares afterwards. I am supposed only to have treatment if I am feeling "well" (this is a very relative term).

But overriding these considerations is the inescapable fact that I have 2 teeth which now need urgent treatment.

I already had to cancel my hospital appointment with my consultant gastroenterologist last Friday. I had been on a 4 month waiting list. I will now have to wait a further 5 months to see him. This of course is dependent on me not being in the middle of a flare at the time of that next appointment, otherwise I will have to wait another 4 to 5 months.

I am in the same situation with my teeth. Monday's appointment (May 14th) is actually a cancellation from back in January, which itself was a cancellation from November. In the mean time the holes in both teeth requiring work are getting noticeably larger.

You see, the NHS has a policy whereby any patient who "wilfully" cancels an appointment goes straight back to the back of the waiting list, no matter what the reason. I have pleaded with doctors, consultants, managers and receptionists but to no avail.

The net result of this policy is that the very sickest patients, those who may well, ironically, be too sick to go to hospital, face sitting through the waiting list not once but twice or even three times. By the time they see the doctor the problem is far more advanced and they are even sicker. It is a vicious cycle. Some of the permanent symptoms I have today are due to these delays.

I don't have to lose these teeth. Under a good system I would have been given an appointment when my November flare ended and would have been seen in December. They would have been fixed by now. Instead I face completely avoidable bad dental health.

Likewise I could have been offered an appointment with the gastroenterologist when this flare ended. rather than a 5 month wait. Who knows how much worse things will get in that time or whether irreversible damage will be done?

While I understand that missed appointments cost the NHS a lot of money, penalising chronically ill patients must equally cost the NHS a lot of money in the long run and that is without considering the human cost. I know for a fact that while waiting for one of these delayed appointments, the health problem has reached crisis point and I have ended up being dramatically hospitalised complete with blue flashing light ambulances (although most annoyingly I have always been unconscious at that point and would like to register my profound disapproval of missing such an exciting event).

Surely it shouldn't be difficult to identify those who might miss appointments due to genuine serious last minute health issues. Those patients should become high priority and offered appointments as soon as possible. This would avoid further deterioration of already precarious health.

In the mean time I worry about Monday and the future of my teeth if I don't go and my general health if I do. It is a catch 22 with absolutely no way out.

EDIT: It is now Sunday morning and I am (*whisper*) feeling tentatively a little better (ie I was able to stand up without immediately falling over and I have made it into the daybed in the lounge rather than stuck in the bedroom). I doubled my steroids 3 days ago in the desperate hope that in a fight against time and illness flare the meds might win. Please keep fingers crossed and cheer on the steroids!

BADD2012: You can type, therefore you can work

Today is #BADD. No, not  "Being A Dastardly Disabled" but "Blogging Against Disablism Day".
I've known this day has been coming for quite some time.
I like blogging.
Recently I've had some really lovely comments about my blog. It even appeared in the Guardian Social page (shameless plug).
So where is my brilliant blog I hear you ask?
Nowhere.
You see, despite being able to type coherently at my laptop and therefore (according to most Daily Mail readers) perfectly able to get a job, I have been too ill to sit (sorry, lie) down and write something.
I HAVE tried.
I admit it hasn't been helped by the fact that I was assisting in the "We are Spartacus" response to the government consultation on PIP. But please note the key word "assisting", not "writing" as was the case for the Spartacus Report itself. That honour goes to the fantastic @narco_sam.
Thirty minutes of "assistance" and 3 hours of rest. This has been my schedule for the past 10 days or so.
Yet because I am able to write a paragraph like this I am judged by a large part of the population and deemed a scrounger. "You can type. You can spell. You can write well. Surely there is a job you can do?" they cry.
I would respond to this. I really would. I would explain about the pain, the memory, the concentration, sitting up (or not), wheelchairs, oxygen, bowels, seizures, emergency hospital admissions... But you see, my 30 minutes are up and I have to go and rest.

When "the vulnerable" have everything to fear.

Many disabled people are currently living in fear since the welfare reform bill became law. Some benefits are due to be replaced with stringent new criteria which mean that many disabled people will no longer qualify for support. With social services cutbacks many will be left with no help whatsoever.

I am not quite in that position. I am among what the government likes to call "the most vulnerable" (a term I personally hate and would never use). Currently in receipt of the highest levels of disability benefits and having easily passed the new dreaded draconian Work Capability Assessment I am in the support group of what is called ESA and am not expected to be able to work again. Having seen the criteria for the new benefits it is clear that even being as harsh as possible, I should easily qualify for the highest rates of these too.

With the government having promised that the reforms will see more support diverted to the "most vulnerable in our society", you would therefore think I have nothing to fear.

You couldn't be more wrong.

I currently live independently.
As I live alone I receive an extra payment called SDP (severe disability payment) which helps cover the extra costs of care and disability.
However a large portion of this and my other benefits goes to social services and in return I receive direct payments, money with which I employ carers to help me with every day tasks such as getting dressed, washed, eating, shopping, etc.
My LHA (Local Housing Allowance) is upgraded to a 2 bedroom rate so that carers or family can stay when my illness is so bad that someone needs to stay overnight.
My flat was adapted 8 years ago so that it is wheelchair friendly.

When the changes start coming in next year, all this will go.

a) SDP is being abolished completely.
b) The 2 bedroom allowance is no longer guaranteed.
c) I will continue to have to pay most of my benefits towards my care. I cannot manage without it.

I calculate that I will be around £80 per week worse off (around half from SDP and half from LHA).
At first I might be ok. Apparently there will be a transitional protection as far as SDP goes, which means I will only be £40 worse off and might be able to get that together somehow. As time goes on however, that will be eroded by inflation and benefit freezes.

The second big issue is : I cannot manage without a second bedroom.
Even if I could, there are no wheelchair friendly 1 bedroom flats available for rent privately (I've been looking). As far as social housing goes there is little wheelchair accessible housing available and in any case I am not allowed a bungalow until I am 50, ie in 17 years time!

So I either have to go into non wheelchair accessible accommodation without provision for my carer or go bankrupt!

The only other solution is for me to go into a care home at the ripe old age of 35. Ironically this will cost far more than if I were to stay put and continued to be paid benefits.

Before the election David Cameron said "If you are sick, disabled, frail, vulnerable, or the poorest in society you have nothing to fear" 


Sir, please look me in the eye and say that now.

EDIT: On April 20th the following article was published explaining that cuts in Worcestershire are to change social serices policy and would henceforth push disabled people into care homes. I rest my case.

Open letter to the Opposition: Where are you?

The Welfare Reform Bill is now law.

As a result of the Welfare Reform Act, DLA is to be scrapped. Its replacement, PIP will be denied to an estimated half a million disabled people, left with no support at all.

Under this scheme, among many many issues consider just the following:

• People who can move just 20m will lose their high rate mobility benefit, will be stripped of their car, yet still face an inaccessible public transport system.
• People unable to bath or shower will be stripped of their personal care benefit as long as they can wash their face and under their arms. Personal hygiene does not seem to matter.
• People unable to dress and undress themselves do not qualify
• People who are incontinent no longer qualify for help to clean up clothes and bedding, regardless of whether they need it.
• People requiring assistance to cook will no longer qualify for help. No information on what they are supposed to do is forthcoming.

Against a backdrop of social services cut, these disabled people will get no help there either and will now be left entirely without support.

Where are you? Why are you not speaking out against this inhumane treatment of disabled people?

As a result of the Welfare Reform Act, a working family who has to support a disabled adult unable to work now receives £100 per week less compared to an equivalent family supporting a child. This is despite the disabled adult having faithfully paid their National Insurance contributions throughout their working lives.

Families with disabled children have just seen their benefit almost halved.

This was done despite the fact that a third of disabled people already live in poverty.

Where are you? Why are you abandoning working disabled families and disabled children to sink even further into poverty?

The Independent Living Fund is closed to new claimants. Its continued existence is under threat. Social services are restricting care to all but the most disabled, cutting care to those who already receive it and increasing cost contributions to a point where people are unable to pay. As a result, many disabled people face an uncertain future and a possible return into institutions. Others already live in dangerous conditions and poor qualify of life through lack of care. This is only set to get worse.

Where are you? Why are you not fighting for the reinstatement of ILF? Why are you not fighting for ringfencing of adult social services care money to safeguard disabled people's independence?

Disabled people unable to work face a test unfit for purpose by a company unable to fulfil its obligations with a third of test centres remaining inaccessible. Seriously ill people with cancer, MS, parkinsons, strokes and heart disease, not to mention debilitating mental health conditions are being found fit for work and face a jammed backlogged appeals process.

Where are you? Why are you not insisting the system be fixed before rolling it out to all claimants?

A disabled person still classed as unable to work can now nonetheless be forced to work for free. Unlike healthy young people, this will be indefinitely.

10,130 disabled people have already faced sanctions, with around 45% handed out to those with learning difficulties or mental health illnesses making them 50% more likely to be stripped of benefits. This is 50 times the amount of sanctions handed to non disabled people and reports are coming in that they are often targeted as an easy way to meet a sanctions quota.

This will only get worse as the workfare programme is rolled out nationally.

Where are you? Why are you leaving sick and disabled people to a system without hope and which will punish them unfairly?

For the past few years disabled people have been the target of a concerted effort from the media and the government, portrayed as scroungers and fraudsters, with misleading statistics released and quoted as “evidence”.

As a result hate crime is rising. In the past year alone disability hate crime has risen by 20% against a backdrop of an overall drop in hate crime. Many disabled people report living in fear.

Where are you? Why are you complicit in this instead of standing against it?

Disabled people need change. They need hope. They need representation. And they need it now before it is too late. WHERE ARE YOU?

Spartacus: The Responsible Reform Report

It is now a couple of months since I co-authored what became known as the Spartacus Report as the main author Dr S.J.Campbell. The results were beyond our wildest hopes. The Responsible Reform report is thought to have played a part in the government defeats in the House of Lords votes as well as in obtaining the concessions in parts of the Welfare Reform Bill. But perhaps most importantly, hundreds if not thousands of disabled people came together in a way we had not foreseen. Many feel less alone and still more are now taking a far more active part in fighting these reforms. I see disabled people all over the net proudly announcing that they are "Spartacus".

This makes it all worthwhile. It is well known that many of the Spartacus report creators are very ill as a result of all the campaigning, the most famous of whom are naturally Sue Marsh and Kaliya Franklin who have been tirelessly active for the past 18 months.

What is less well known is how the Responsible Reform came about and how close Spartacus came to never happening at all.

I would first of all like to thank the group of people who placed the FOI (Freedom of Information) requests which enabled us to get hold of the 500 odd group responses to the DLA consultation. Without this forward thinking step nothing would ever have happened.

This data was then passed on to Sue Marsh who started to look through it and recruited a few volunteers to assist. I became one of these quite by accident having offered to help after she mentioned she was doing a "research project" in one of her blog posts.
Over the next few months people simply read the data and tried to sort through it in an ordered way. However most of the volunteers fell by the wayside.

On December 06th all hell broke loose. I received a panicky email from Sue saying we still had half the data to go through but only a week and no volunteers left.
This was "crunch time". I doubted Sue could manage on her own. On the other hand if I offered to help I knew it would be a mammoth task and my health would suffer hugely. I spent 3 hours wrestling with myself before winning through and saying I would do it. It was a very close call. The Spartacus Report probably nearly ended there and then.

As it turned out we still had a month left. I went through all the remaining data as fast as I could and summarised it. A delighted Sue pointed me towards the Government's response to the consultation and asked if I could have a "quick look" and note down any discrepancies.

After a moment of pure disbelief reading the government's report I set to work. By this time I was extremely ill and could only work 15 minutes per hour. I was pushing myself to the limits to get it done knowing that if I didn't no one else would and it would all be in vain. I sent the result to Sue whose response was "crikey it is a bloody thesis!". This now forms the backbone of the Spartacus report: the section dismantling argument by argument the government's response to the DLA/PIP consultation. Sue was so excited by it she decided to pull out all the stops, deciding that we finally had something that could upset the government.

My job now thank goodness was ended for the time being and I retired to bed for a full 5 days.

Over the Christmas period Sue now recruited and coordinated other people to add to the report and turn it into the finished product, notably Declan Gaffney who wrote the statistics section. Sue herself wrote the executive summary and the press release. Kaliya was brought in to write a conclusion and others came in to help with editing, formatting and the important job of checking details, finding quotes and regulations. These include Mason Dixon, Leigh James, Sam Barnett-Cormack , Rhydian Fon-James, Dawn Willis and a few others. It is a sad indication of the times that these last wish to stay anonymous for fear of repercussions from the DWP or others.

Sue Marsh and Kaliya Franklin then used their extensive media contacts they had painstakingly build up over the past 18 months to prepare for the release of the report. With the help of the other Responsible Reform contributors they planned their attack.

At this stage the wider disability community finally got involved although secrecy was still kept. Funds were needed for the printing and distributing of the report to all the MPs and peers ahead of the voting. It is a measure of the trust people have in Sue Marsh that the £2000 required was raised within 24 hours of an appeal being launched on her blog despite the full details of its purpose being kept secret.

Other people also got involved in a more practical way, volunteering to print, post and help in any way they could. Others volunteered to be constituency reps and contact their MPs on the day of release.

Finally the Responsible Reform Report was launched on Monday January 09th and soon became dubbed the Spartacus Report. I opened my own twitter account as Spoonydoc and joined the other authors and helpers in making as much noise as we could. It worked! #spartacusreport trended all day on twitter and received support from celebrities such as  Stephen Fry, John Prescott, Alastair Campbell, Billy Bragg, Val McDermid, Kate Long, Julie Hesmondhalgh, Sue Perkins and Tim Minchin. It is now said to be the most successful social media activism ever.

Disabled people everywhere appeared to finally find their voice. The Lords found themselves deluged by emails pleading to fight the Welfare Reform Bill. This added to the work already done by other disability groups such as DPAC, black triangle, and various charities started to count.

The government was defeated by no less than 7 amendments in the House of Lords and concessions were made on other issues including the roll out of PIP.

As for the Spartacus Report, initially ignored by the mainstream media, that all changed.  Sue Marsh appeared on Newsnight, and others including Kaliya Franklin appeared on numerous radio shows. Perhaps most importantly disability was finally shown in a positive light with supportive articles from newspapers traditionally full of "scrounger" rhetoric such as the Daily Mail. I would like to thank Sonya Poulton for her efforts in this. However the effort of all this had by now as we know taken its toll on the likes of Sue and Kaliya.  I myself am still recovering from writing the report itself two months on. Seriously ill, I have been unable to resume any disability campaigning at all and am finding it frustrating watching others work themselves to the ground without being able to help them.

Disappointingly the government resorted to "financial privilege" to overturn these defeats and push ahead with its bill. Now back in the Lords, further amendments to the Welfare Reform Bill have been won and more concessions awarded, but the future still looks bleak for many. However we must remember that it is better than it could have been.

The fight though must continue. And it seems that many disabled people want "Spartacus" to be a part of this.

Astonishingly what started as a report into a fudged government consultation has now become a loose informal disability movement.

My hope is that "Spartacus" will help by giving every disabled person assistance, ideas and opportunities to do their bit however small. Because that is the only way we can hope to win this.

If you think it is impossible for you to help, a simple example is signing Pat's petition and asking people you know to do so too.

Some wonderful people have come forward to help "Spartacus". They have written a simplified version of the new draft PIP criteria for instance. They were also involved in helping Sue write the briefing for the Lords ahead of the voting on Tuesday February 14th.

There is a Facebook page for people who want to be involved as well as a website hub for information and ideas so that everyone can do something.

Have a look. And become "Spartacus".