Latest Entries »

Petition demands fibromyalgia test be fit to work.

via Petition demands fibromyalgia test be fit to work.

ravenswyrd1:

Sue Marsh has asked that we all share this…Dxxx

Originally posted on Same Difference:

Sue Marsh has asked for this to be shared. What great campaigners want, great campaigners get.

Before I type another word, I’d like to make it clear that I think the idea of an overall benefit cap is ridiculous.

When times are hard, say during recessions, you actually want to spend MORE on social security. It boosts the economy and is the best way of making sure money is spent locally and directly. When times are better and jobs are plentiful you can reform and cut back.

So the very idea of an overall benefit cap is utterly counter-Keynesian and, well totally pointless really.

I’d also like to make it clear that I’m dripping with contempt that Labour are going to support an overall benefit cap, not because they believe it’s a good idea or because it fits in any way with a Labour concept of how to run economies…

View original 522 more words

ravenswyrd1:

Please comment and share… Dxxx

Originally posted on #107days:

Day 3 was adopted by Jill Bradshaw  and Julie Beadle-Brown of The Tizard Centre . They have drafted the following letter. We are now looking for comments, edits or additions for this draft *and* for people who would like to sign it. We hope to gather at least 107 signatures, hopefully more. Please add any thoughts and your name as a comment to the draft. If you exist on social media anonymously but would still like to sign please email us .

Connor Sparrowhawk spent 107 days in an Assessment and Treatment Unit (ATU).  He drowned in the bath.  An independent assessment concluded that his death was preventable.  We have come together over the last months as a collection of individuals who are shocked and outraged by what happened, as a group of people understand that we are all responsible for what happens to vulnerable people in our society.

View original 772 more words

ravenswyrd1:

Great blog about Fibro… EmsyBlog… Dxxx

Originally posted on EmsyBlog:

Fibromyalgia just ain’t cool. And there’s statistical research to back it up.

And I quote:

Respondents [senior doctors, GPs and final year med students] were asked to rank 38 diseases as well as 23 specialties on a scale of one to nine. …Myocardial infarction, leukaemia, spleen rupture, brain tumour, and testicular cancer were given the highest scores by all three groups. Prestige scores for fibromyalgia, anxiety neurosis, hepatic cirrhosis, depressive neurosis, schizophrenia, and anorexia were at the other end of the range.

It doesn’t show it very accurately in that quote, but the most “prestigious” disease to treat came up as MI, and the least was fibromyalgia. Colour me unsurprised. Two of the “popular” diseases occur mainly in men (especially as one of them involves have a specific set of genitals). Two of the least “popular” diseases occur mainly in women. All of the “popular” ones are dramatic conditions…

View original 520 more words

I guess this is a post ive been avoiding really as it’s a subject I try to avoid thinking about at all costs.

When I first became ill I was at the end of my first year of a degree in Studio Ceramics I had my future planed out.  I would make wonderful ceramics by day that would sell for lots of money and I would sing by night in the band I was in that was becoming quite well-known locally… life would be perfect…
But as often happens none of these things happened well not the way I imagined they would…

I did complete my degree through sheer bloody mindedness and with a lot of help from my partner J who had stuck with me despite my diagnosis coming only a few weeks in to our relationship…

But the price had been… becoming rapidly sicker, becoming a wheelchair user and having to give up my singing which was like a dagger to my heart a wound that has never healed… I miss it like you would breathing…

My partner J became my non medical helper at college doing all the things I couldn’t… for example he would take me to college, wedge my clay, prepair my tools, sort out library books take me down the hill to the canteen and back… you get the picture… and because I was so tired when I got home he would clean the house, cook our food, bathe me and all the usual stuff people need help with when they are so fatigued they can hardly move. Learning to cope with someone else doing almost everything for you is soul-destroying, its frustrating, lonely, and heart breaking to see someone you love give up so much of themselves and their lives knowing you can do little or nothing about it..
When you literally can not survive without the sacrifice of another’s freedoms it’s a pill that is really hard to swallow.

When I finished my degree I was almost completely dependant on J for everything but I forged forward on to do a p/t PGCE.
It was almost like I felt if I stopped trying to achieve something with my life I would stop living but after a year I started having panic attacks at just the thought of returning for my second year I literally would go white and shake at the thought of all the travel and work I needed to do… not my first experience of mental health problems but the first since becoming sick.
I took a year out which turned in to several as my panic subsided and the mother of all flair’s hit me, I could barely get out of bed and dress and often just made it to the sofa and no further… months turned in to years… after a while I began to recover from my flair slowly making my way back to some kind of balance although even this was nothing like normal but I wasnt constantly dependant just mostly… lol
During this time J got himself a job working evenings so he could be around to help me during the day. If there was an award I could give him he would be buried under the weight of them…

I decided to try college again and get the elusive PGCE two weeks in to the course I found out I was pregnant which although daunting wasnt so hard as the pregnancy hormones relived many of my fibro symptoms and I was used to being tired… my son was born at the end of my first year and was cradled in my arms while I typed with the other for most of my second year.
J was amazing looking after our son and me and working with little complaint…

When I became a qualified teacher I got a job with the local college on permitted work at last feeling like i was contributing to both my local community and to the family…all was good till ESA came along and I was found fit for work which of course im not… being able to do five hour’s a week does not make you fit to do 30… I went self-employed as I was encouraged to do by work choice everything seemed rosy till J became ill with cancer and im sorry some of this you’ve heard before but im getting to it…
Now having been off work for 9 months while getting over treatment and complications having gone back to work we are faced with quite a bit of debt not least of which debt from housing benefit cock ups… but J now faces redundancy which brings me full circle back to being a burden my total monthly income before tax credit or housing benefit is £150.00 I get low rate care DLA wich is £80 odd a month im struggling to get enough energy to work enough in my business to make it pay at all and at the moment it owes me in materials but now im faced with no income to put anything in my business its a horrible catch 22…

During all of these 18 years we have never had any careres allowance nor care support…

Add to this the fact that im waiting for the results of a biopsy…

I have found myself wondering if fighting to work the one morning I now do and fighting to keep my business is fair to J if I was on esa id be on nearly twice what I earn now not because it’s a high paid benefit but because im to ill to work enough to earn anything…

Which then brings back the old ghosts those thoughts you try to hide you dare not admit to anyone because you think they may label you or lock you away… and the reason I try to avoid thinking about how my health effects others… the little voice that tells you, you have been a burden long enough that they would be better off without you. That if you were gone that maybe they could find peace and prosperity, if you where no longer part of that picture… that maybe just maybe its been you draining your loved ones that has held them back… it’s at times like these when your thoughts are dark and especially when you have a potential reason for them to go to really dark places…

That fighting to keep that little piece of independence feels less like inclusion and not being left to languish on benefits and more like the milestone around your neck that will drag you under…
Dxxx

Council Tax Criminal?

ravenswyrd1:

Heres a piece from Michelle about her Day in Court re Council tax… Dxxx

Originally posted on michellekent1:

Today was the day. Yes, it was my turn. My turn to be summonsed to Truro Magistrates Court for non payment of 2013/14 Council Tax. Now, let me be very clear as all the Politicians state…..
“I have NO problem with Council Tax and would happily pay it, ‘if’ I were working”
However, I am not. I am disabled. I have partial sight and Sponylosis to name a couple of my disabilities. As most of you know, last year alot of things changed under the WRA – Welfare Reform Act.
Council Tax Benefit was scrapped and under the Localism Bill powers were handed to Local Authorities to set up their own schemes. To be called CTS – Council Tax Support. So now ALL people of working age, have to contribute to Council Tax.

Whoaaa!!! Most of these people are on some kind of benefit, like myself. I get ESA, some…

View original 1,267 more words

ravenswyrd1:

Very good article onbthe WCA… Dxxx

Originally posted on Vox Political:

Mansel Aylward, former chief medical officer at the Department of Work and Pensions, now director of the (UnumProvident) Centre for Psychosocial and Disability Research at Cardiff University: Architect of misery?

Mansel Aylward, former chief medical officer at the Department of Work and Pensions, now director of the (UnumProvident) Centre for Psychosocial and Disability Research at Cardiff University: Architect of misery?

If we know anything at all about the Work Capability Assessment for sickness and disability benefits, we know that it doesn’t work. In fact, it kills. There is a wealth of evidence proving this, and if any readers are in doubt, please take a look at the other article I am publishing today, MPs tell their own Atos horror stories.

Much has been made of this fact, without properly – in my opinion – addressing why it doesn’t work. The apparent intention is an honourable one – to help people who have been ‘parked’ on disability benefits back into work, if it is now possible for them to take employment again, and to provide support for those…

View original 1,534 more words

Thursday i had the dubious good fortune to be looking through twitter during and after the #WOW debate…
I came across some long and varied tweet between several campaigners and Mr S and as you might of guessed there was plenty of mud slinging. Some of which i felt was way more extreme than was necessary or healthy and probably has had lasting consequences for at least one participant. ..
Anyway what struck me apart from all the completely out of proportion accusations where several interesting views of Mr S…

Firstly Mr S is convinced all campaigners have been sending death threats to ATOS… personally I can say that I don’t think any of the campaigners I know would do that, least i would hope they wouldn’t after all despite their involvement I believe the fault lies with the DWP even if ATOS are complicent and should be held accountable. Death threatening the company and staff is counter productive to getting public opinion on our side… Most of us have been to busy helping individuals and trying to effect useful change at the DWP to engage with individuals at ATOS.

Secondly Mr S seems to think that all people who are not paraplegics or born with some form of life limiting physical or mental disability are not disabled and are therefore workshy… as someone with a hidden disability/illness who works and runs my own business  as well as having a disabled partner who also works full time in a skilled job it would seem that that assumption is on shaky ground… and this evening I was just celebrating with a friend who has had to give up a job because of her ME who has been successfully employed by another employer full time but more suited to her needs before she has had a single day unemployed… So maybe Mr S is showing his prejudice in demanding to know why we want money taken from the ‘real disabled’ (his words) to fund people he perceives as workshy when people who are chronically sick can and often are to sick to consider working in an employment market that has little understanding of their needs and no intention of employing them… and the so called mechanisms designed to help disabled people in to work to manage work and to retain work function so poorly see my previous blog about Access to Work here… But those of us who can find such employment are more than willing to do so if our health allows…
Sometimes having work and being willing to work still doesn’t always make it possible for you to actually work…

Thirdly Mr S seems to think that the WOW petition and other campaigns are about shutting disabled people away out of sight… or in one of his more colourful responses thinks we campaigners want all ‘real disabled’ people ‘gassed’ to leave more money for the ‘fakers and workshy’… this shows a deeply disturbing truth and I think fear that Mr S has… could it be his agressive defence of the welfare changes is his way of kinda wearing camouflage… hiding in plain sight from a system that is destroying disabled peoples lives… im on your side so dont attack me im a ‘real disabled’ person…

And his oppinion about us couldn’t be further from the heart of what campaigners want, in fact what we are fighting for is exactly the opposite…
We absolutely believe those that are well enough and who can and want to work should get as much support to do so as possible but thats not what the Work Capability Assessment does. It doesn’t say ok what work can you do or what work would you like to do and what do you need, how can we support you to be able to achieve that ambition… The WCA asks can you work on any or all jobs whether appropriate or available and even hypothetical jobs that may or may not exist… and it does it in a way that is hostile, unsupportive, adversarial, terrifying and damaging to both self esteem and mental well being, having a devastating effect on the claimant… There is little provision to help those found fit to actually get the work they can apparently do and no safety net if after trying work they find they cant do it or get sicker or have new disabilities develop.They just have to reapply and go through the whole nightmare again… I fully expect cases of WCA/PTSD to be recognised in the coming years…

I say all this from experience the only support is through the work related activity group which doesn’t apply if your found fit for work and even if do end up in this group the system is so badly floored you might fare better out on your own… As a Job Seeker there is the Work Choice option which i talked a little about in my previous blog… but it is far from successful and if it fails you have to start all over again…

Simply put the WCA tests for the wrong thing in the wrong way and will therefore never achieve its goal… assuming that is, that the goal is not just to cut the numbers and save money… if its about getting the disabled and those with chronic illness back in to work where possible then it has to start with the right question. Which in many ways is not a question at all but a dialog individual and tailored... what work can you do or would like to do and how can we help you do it…

My fourth observation is more worrying and yet for me the hardest as I hate criticising personal choice and believe that every individual is entitled to their opinion assuming it doesn’t hurt anyone else… but reading the comments on twitter Mr S made to several activists and campaigners I found myself deeply disturbed that Mr S thought it was appropriate for an adviser and self proclaimed voice for disabled people to speak to members of the public in this way… to accuse them of terrorism and to accuse them of murdering ‘real disabled’ people and wanting them gassed. Is deeply hurtful, I was shocked that anyone would think that of people I know who are passionate about the lives of disabled people being about choice and inclusion and I was shocked that someone who says they want the best for disabled people could be so far off track and so hurtful… I think the tweets from Mr S should be investigated by twitter by the police as he must have come very close to braking both the rules and the law…
As a disabled working person and a human being who tries to see the good in all things I was disgusted and appalled by his behaviour on Thursday and call upon the powers that be to investigate his twitter activity…
Dxxx

ravenswyrd1:

Follow the WOW debate here if you cant streem it lve…Dxxx

Originally posted on Vox Political:

Today's the day: The WoW Petition is being debated in Parliament today, having won the support from MPs necessary to trigger a debate.

Today’s the day: The WoW Petition is being debated in Parliament today, having won the support from MPs necessary to trigger a debate.

George Hollingberry

11.46am Liz Crow on Twitter: 15% of disabled people’s health affected “a lot” or “quite a lot” by lack of money http://iaf.gd/8sz #InActualFact#WOWFeb27

11.44am The WoW petitioners want the truth revealed, because they believe no civilised society would allow people to be treated in this way, Mr McDonnell concludes.

11.43am The result: Poverty for many. Inability to heat homes. Difficulty feeding the household. Humiliation. Suicide. Disabled people feel hounded by the media, politicians and the government, just for being disabled.

11.43am Demos/Scope study concludes that disabled people will lose more than £28 billion and will bear 13 per cent of the cuts.

11.42am “Disabled people are disproportionately hit by the bedroom tax with 72 per cent of affected households containing a disabled…

View original 1,417 more words

Hi peeps this is a post about Access to work inspired by Kaliya Franklin’s blog post

The ‘Scrounging Scum’ to ‘hard working, tax credit claiming, socially acceptable scrounging’ journey 

But it’s also a way for me to get some stuff out there so it’s not only in here anymore… *Warning* it will be long…

As most of you know I have Fibromyalgia among other things…

In 2009/10 I first realised something was going to happen to my Incapacity benefit… that I would at some point in 2010 be reassessed for something called ESA… Having a fluctuating condition, I quickly came to realise, having listened to accounts of the process my friends had gone through that it was unlikely  I would get through as I had been working on higher permitted work for three years so I started to look for alternatives.

I came up with the idea of starting my own business as a designer maker and keeping the teaching job I was doing… So I signed up for work choice that was a rocky road to say the least they where just not set up for self employment… My business has yet to make any money… sigh…

During this time I made my first application to Access to Work… to find they couldn’t help with my job because I had found it myself and hadn’t used Job Center Plus to get it so I fell at the first hurdle.

Next came the application for help with my business… I phoned Access to Work to start the ball rolling but because I was with Work Choice they wouldn’t accept my application and re directed me back to Work Choice. Work Choice said they didn’t deal with Access to Work and knew nothing about it… Fell again at the second hurdle…

In October 2011 I went P/T self employed, I had no funding and no stock so spent the winter months making work as and when I could afford materials and doing small local craft shows.

Towards the end of my first year in which I had made lots of work and had managed to go to several craft shows I decided I really needed support from Access to Work so contacted them again. This time they passed me to an adviser who asked to have details of the travel I expected to do in mileage and cost as well as time I might need a support worker and approximate cost along side any equipment needs I might have, I came off the phone thinking how am I going to work all that out… I was at a bit of a loss…

During this year my partner  J had developed a painful knee and had been in and out of hospital for tests and scans, some of them in Oxford, we live in Cornwall.

Then J was diagnosed with bone cancer (2012) a very rare one and he had to have a serious operation to remove his knee and a big chunk of his upper thigh bone and some of his shin bone and have them replaced with prosthetic metal implants the upper rod almost reaching his hip and the lower rod going half way down his shin bone… (*try to remember this description for later)

Access to Work and pretty much every thing else was forgotten at this point, though I kept my job going as I realised my two and a half hr job and my P/T business would soon be the only income we would have.

Just before his op I contacted Access to Work as I realised I was going to need help because not only would I need to keep my job but my Partner would no longer be able to care for me or my son I was going to have to do it all…

When I phoned my adviser there was a message saying he no longer worked for Access to Work and I should contact the main office… I had to start all over again… I phoned and was told an adviser would phone me back…

They never did…

After the op J came home it had been hard coping on my own with a little help from social services, while he was away but having him home was hard to as he could hardly walk and was on a lot of pain medication…We settled in to a routine when two weeks later he developed symptoms of a tummy bug… I had to fight the GP to get him to come out… My partner was rushed to hospital with pneumonia and two blood clots on his lung, he was in hospital for another week…

Christmas was just round the corner so I had to do some craft fairs as this is one of the busiest times of year and I needed to try to make some money…. Once again I considered contacting Access to work but I just didn’t have the time. J was still on Statutory Sick Pay so we where doing ok…

January  2013 came and J started to feel cold all the time we thought it was just the weather, then he lost his appetite after a few days I said you need to see the Dr, so we booked an appointment… The morning of the appointment J collapsed in the kitchen his leg had gone very red, I rushed him to the surgery and the Dr saw him straight away… she called an ambulance which we had to wait an hr for they where all busy… in that hr J went from sick to very sick and in extreme pain… when we got to the hospital they kept him in A&E for several hrs, then suddenly started rushing about giving him meds they thought he had an infection… over the space of the next ten days we nearly lost him a couple of times he was delirious with the pain because they couldn’t get it under control even with very strong meds and their was little to nothing I could do to help except be there as much as I could trying to share his pain… he had two wash outs to try to get the infection under control… they basically opened up his scar and jet washed the tissue and prosthetics to get the muck out… it didn’t work and he got sicker again… at this point they transferred him to Oxford, I knew how sick he was and how close it had come to losing him so this was really hard as I couldn’t go with him… I had to try to keep things as normal as possible for our son and try to keep my job going… He was in Oxford for a further twenty odd days and had another wash out… The bone infection specialists devised a treatment of combination antibiotics administered via pick line, which started to work and he started to recover, we managed one visit while he was there but it was very hard on us all being so far apart…

J was in hospital for just over a month, leaving me to manage on my own… just as I need to be doing my tax returns lol… it doesn’t rain less it pours…

When J came home he still had the pick line in and had nurse visits every day to administer his meds… they sent a large box of meds with him id never seen so may boxes of injections and tablets, our kitchen trolley looked like a chemist shop… he was very weak and it took a lot of time for him to recover but the med combination worked and he eventually started to pick up and they removed the pick line and put him on meds by mouth…  a combination of two antibiotics twice a day specialised ones to combat the bone infection that likes to live on prosthetic implants… He’s still taking them now a year later…

By this time it was April 2013 and J’s SSP ran out and he applied for ESA, he was very quickly sent an ESA50 (within a couple of weeks) we went through the process of gathering his info and sending it off (exhausting)… the new crafting season was beginning… I had been trying to make new work all this time but it was difficult to get as much done as I would have liked… the notion of Access to work crossed my mind again but to be honest it seemed like more work than I could handle having to do all the leg work myself just wasn’t possible…

I had also started the Stats Campaign with Jayne Linney during the last couple of months as I needed a way to channel my anger and frustration at our misfortune and the treatment of the disabled…

In July J Drs decided his knee wasn’t bending as well as it should , as he could only bend it 35 degrees… So they decided to do a Manipulation Under Anesthetic (MUA). This was done in Oxford again and was supposed to take three days… unfortunately the op went badly and his scar was torn open and his quads tendon was damaged this is the one that keep your thigh muscles in place with out it your muscles would be like a rubber band rolled up round the top of your leg… our physio is good at graphic descriptions…lol  they had to open his scar up and repair the damage… he was in hospital for another week…

When he came home he wasn’t allowed to bend it for a few weeks and had it in a full leg splint… at the end of August a year after diagnosis he was allowed to start physio and began to bend it in a bending full length splint…

In Sept 2013 over two yrs since his first problems J went back to work, still on two crutches with a full leg splint…having never heard any more from ESA, he hadn’t been placed in either group and hadn’t had a WCA… J’s work offered a sit down day job, as part of his reasonable adjustments because his job involved standing for eight hours (*remember the description of his prosthetics) and walking about but they assured him they would find him a sit down job and on days as he could no longer ride his bike to work to get to work on the evening shift. He would be allowed a graded return all of which sounded possible… The works Drs assessment stated this was how it should be done…

We contacted Access to work about his transport and mentioned he’d need a in work assessment…

J started work and was put straight back in to his old job…

On his feet for the half a shift he was doing and they supplied a chair on wheels that J found dangerous to maneuver with one leg as it was like paddling with one paddle he kept going in circles… this continued… J complained that he couldn’t do the job… his work just said your not using the chair enough and that he was his own worse enemy… all this was done on evening shift… Slowly his hr increased to full time over a month, so did his pain and swelling, preventing his knee from bending at all… In September J applied for Personal Independent Payments… here at the tail end of February we still have heard nothing from the DWP about his PIP application…

Access to work sorted paying his transport but failed to do an in work assessment…

We phoned… they said we needed to re apply… Aaagghhh… We reapplied weeks went by nothing… We where told they couldn’t contact the company to do the assessment, J told them not to bother… he had lost hope, hope that they could help and hope that the company he had worked for over ten years would let them help because they clearly didn’t care about the pain and damage they had caused him… he got really low… so did I but I couldn’t show it…

In November we went to London to visit Parliament… :)

January 2014 came and we learned that we had been massively over paid by Housing Benefit despite offering to give them everything they needed and giving them everything they asked for , the same week J was told he was up for redundancy, just five months after getting back to work and being tortured by his boss who happily told him one day ‘I had a bit of knee trouble once it got better”…

During this last year our son has been assessed for sensory issues and is now being assessed for Autism… his OT thinks we have to work a lot harder as parents than someone with kids that don’t have his problems. As parents of an only child we thought all kids where this difficult… bless him we are still fighting to get him the help he needs at school…three years and counting…

and then my computer died… :(

So we have had no assessment for ESA, limited help from Access to work and no news from PIP… and plunged in to huge debt by HB…

The support system for helping the sick and disabled work… doesn’t work!

Now it’s close to a new crafting season… Do I apply for Access to Work?

I know this was long I make no apologies, some things just have to be said out loud, I never want to forget what theses past two years have been like because it drives me to fight for others.

I want to say thank you to the staff of Tralisk Hospital Truro a hospital that often gets bad press but saved my J more than once and me and our son in the past, and The staff of the Nuffield Tumor team and the Bone infection Unit for saving J from the cancer and the bone infection… with out the NHS J would not be here…

I want to thank J family and my family for all their support and help this would have been a lot tougher with out them…

To his boss and his company I want to say Agghhh you ass holes… but I doubt ill get the chance… :) And just so there are no doubt about the pain they caused him ive just found this lovely pic of his prosthetics… its not the full leg which is a shame but you get the picture…

J's Prosthetics

J’s Prosthetics

There are new things a foot… the stats campaign is ongoing… I’ve started a new Fibro campaign with fibrogirl called for the moment FibroMe ForAction, and I’m working on something I think might have been over looked, I need to work on that…

Thank you for staying with me I need to go wipe away my tears there hasn’t been much time for them in the last two years and I needed to acknowledge in some way how crappy its been so I can move forward… J continues the meds and is slowly getting stronger… I’ve been in a massive flair since Christmas and quite low but I’m beginning to come back so watch out IDS I’m not done with you yet… Dxxx

PS i believe the National Service Bill gets its second reading tomorrow lets hope it dies…

Follow

Get every new post delivered to your Inbox.

Join 111 other followers