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Thinking this could be of use to some one… Dxxx

Originally posted on deaeper:

I have been working with a client for the past few months who has numerous medical conditions. This person also looks after his wife who also has numerous medical conditions.

When I first started working with this gentleman it was to advise him on the ESA tribunal that he was going to attend. As I was unable to go to the tribunal with him that I had to arrange for one of our support team to go with him, which also meant introducing him at another meeting.

The tribunal was a success and our client was extremely happy. After a few weeks I had a phone call from this client in reference to three letters he had received from the Job Centre informing him that he had to attend these mandatory interviews.

This gentleman has like numerous other people has developed “Brown Envelope Phobia” and was in a state of…

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Invisible disability comes in many forms… Think before you react… Think how you would feel and how you would wish to be treated… Dxxx

Originally posted on So Bad Ass:

Dear lady who loudly tutted at me using the disabled loos,

I know you saw me running in, with my able bodied legs and all. You saw me opening the door with my two working arms. You saw me without a wheelchair. Without any visible sign of disability.

You tutted loudly as I rattled the handle with my hands that work perfectly and my able voice call to my kids that I’d be out in just a minute.

My lack of wheelchair may have suggested to you that I was some lazy cow who didn’t care. Some inconsiderate bitch who was using something I wasn’t entitled too. (I actually carry a card to explain that I’m entitled to and have a disability key if you’d have cared to ask). You may have seen my face blushing as I caught your eye and assumed I was showing guilt at blagging the…

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The hidden lives of ME

Follow this link to a heart felt video from a young man who’s reaching his limit. He feels his life is passing him by while no one works on a cure… He’s not alone in that feeling… Dxxx video


Excellent points all from our Jayne… Dxxx

Originally posted on jaynelinney:

Yesterdays news was full of the latest findings from Institute for Fiscal Studies demonstrating  the ConDems Changes to the Tax and Benefits system has cost households £1,127 a year on average, and even the Mail concedes this means “poor families have lost the most as a percentage of their income“; and yet despite this, the Government still maintained “UK income inequality is now lower than when this Government came into office“.

I doubt anyone will be remotely surprised at the Coalition disputing the data, this is another example of how this unelected Government has persistently and systematically Lied to the people.

There been countless claims on social and even occasionally in main stream media about the number of people dying as a result of Welfare Reform, and those of us involved in any of the campaigns to raise awareness, need no persuading this is an absolute truth. The situation where respected organisations produce…

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Black Fire

How do you pick up the pieces
When they are shattered beyond repair
How do you hold it together
When no part of our life is still fair

Hope feels like a milestone around us
Dragging you right through the mire
Fear is a pain like a needle
Piercing and bringing the tears

And all we can see is the Black Fire
Insidiously bringing its friends
And all we can do is move forward
Hoping against hope till the end

And sorrow is a place where we live now
Sorrow for all that’s been lost
And all we can see is the Black Fire
Every day lived in desperate fear

And where is the help and the hindrance
Where is the path we can tread
Now we follow on a road so unspoken
And we start all our days filled with dread

And all I can see is the Black Fire
Bringing us down to our knees
And all I can see is the Black Fire
The Black Fire between you and me…


Dedicated to all partners and carers, friends of those with cancer…


New DWP pilot schemes for those with MH conditions… thanks to Johnny Void for this blog post… Dxxx

Originally posted on the void:

work-makes-meThe DWP are currently tendering for a pilot scheme in Scotland which will see claimants on both unemployment and sickness benefits forced to attend training and possibly even workfare under the threat of benefits being stopped.

Around 450 claimants in the West of Scotland Jobcentre Plus District are expected to be forced onto the scheme if Jobcentre staff decide they have “low self esteem; and/or limited capability to manage stressful or challenging situations.”

Unlike the Work Programme, this scheme will not be aimed at people who have been on benefits for a long time.  Instead the tender documents state that those referred are likely to be people whose period of unemployment is less than 26 weeks, suggesting people could be sent from the first day of their claim.

The DWP say they expect 20% of participants to enter an “educational training course” including work experience or sector based work academies…

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Great blog post by Jayne Linney, about how the differing rates between DLA and PIP are effectively a cut in benefit… Dxxx

Originally posted on jaynelinney:

Well I’ve received my PIP award and hooray I’ve ‘scored’ more points than on my DLA and yet, despite this I’ve  been awarded ‘Standard’ rates for both Daily Living & Mobility Elements, to explain how this makes a real difference to me read on.

To get PIP at all, you must score between 8 – 11 points in both daily living / Mobility and to get the Enhanced rate it’s 12 points; the 2 elements are valued differently with

the Daily Living standard rate being £53.00 and the enhanced rate £79.15 per week,

for  Mobility, the standard rate is £21.00 and the enhanced rate is £55.25 per week.

This differs greatly from the old DLA which had three levels of award, the rates which are/were worth  for care

lowest rate – £21.55

middle rate – £54.45

highest rate – £81.30

and for the mobility component

lower rate – £21.55
higher rate – £56.75

I believe…

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Hello again Folks… It’s been a while again I know…

Well where are we now… When last we spoke, J was waiting for his big ops that where going to take him back 100% and hopefully solve the amazing no bendy knee problem… J was due in on the 14th of October 2014… Which was cancelled… To make way for an emergency… He was re scheduled for the end of October… So he dutifully said goodby to us yet again and went up to Oxford to prepair for the surgery, something which took a great deal of courage. It was to be a big surgery to remove his prosthetic knee and bones and replace it with a antibiotic cement prosthetic version for six weeks while they tried to eradicate his bone infection and then a second op to replace it all… Which would hopefully not only get rid of the infection but also get the very expensive but non bendy knee bending…

He arrived the day before and went through all the pre op assessments and tests that they couldn’t do before hand, because we live so far from the hospital, prepared as best he could, had his last meal so to speak and tried to get some rest before the big day…

Day of the op came round I was doing everything I could not to freak out down here so far away and trying to focus on work, yes it was a work day for me… Only to receive a text from J saying the Dr wants some more tests done before he does the surgery… Fair enough I though he needs the most up to date information…
Two hours later I finish work, not knowing if J was in surgery or not and drive to my mums to pick her up before going home because, well honestly I really didn’t want to be alone while my partner underwent such serious surgery so far away… J phoned when I got home…

His surgery had been canceled less than an hour before he went in… His orthopaedic surgeon and plastic surgeon had just been to visit him and had explained that they didn’t think the surgery was worth the risk of further infection and potential further loss of mobility. They where worried that he was potentially infection free and thought that further surgery may give him another infection, that might get out of control. That unless they where sure he still had the infection or had some other reason to go in they where not prepared to put him at risk for possibly little improvement in his mobility. The high risk of another bone infection, that are notoriously difficult to get under control and cure, out weighed the other potential benefits….
Could they not have decided that 8 months ago before we lived off his redundancy money because it was pointless him getting a job?…

So he was coming home… Grrr and phew all in the same breath…

His doctors decided to take him off the two different antibiotics he had been on for eighteen months and wait and see if the bone infection re surfaced… His GP is testing him regularly and he has had a slight increase in his infection markers but we won’t know for some time if it’s significant…

So J came home relived he hadn’t had to go through more extremely painful surgery but frustrated that he would be more significantly disabled than expected for the rest of his life. However grateful that as a cancer patient in remission… thankfully still no new tumours have been detected… Touch wood… He still has a life to lead.

So now has begun the next journey for J, which is the journey back to work, and although his leg doesn’t bend and is still very swollen and painful he feels he can’t put his life on hold any longer, he needs to get a job… The ESA 365day rule dictates that we can’t afford not to… But what job, doing what? His previous experience had made him realise that most employers are not interested in employing someone with his health history or his disability, despite what the government says, he has come to dread that moment when in the job application process he has to disclose what he has been through knowing that far from thinking how tough and amazing he is to have survived all he’s been through, they will just see him as an employment risk and reject his application before he even gets a chance to talk to them…

So I suggested he went to see our local JCP disabilities specialist a lovely lady who I have had help from in the past, we made an appointment for later in November… In the mean time J found a job he was convinced he could do, cleaning in a local supermarket p/t… That was soul destroying for both him and me as I had to make him realise he couldn’t do manual work on his feet any more. All the jobs he has had in his life have been on his feet physical work. With the help of our physio, the lady who realised J had something more than a knee strain in the beginning, we managed to get him to realise he couldn’t be on his feet working like he had been in his previous job even part time, because of the strain it would put on his already not very well leg. But he also can’t do a sit down job because his leg loses feeling after sitting in a chair with out his leg up after only a short while… And like J said in a fit of frustration one day…


I didn’t know but said lets wait to see ŵhat the JCP have to say…

I understand his frustration and I know it’s not all about his leg or his job but it’s also about suddenly being dependant… And being dependant on the person that you used to be the carer off, and who used to be dependant on you… must be very hard… I know it is for me…

The ESA 365 day rule is trapping people in to financial dependency on their partners leaving them with no financial independence from people that they may have difficult or abusive relationships with. This rule that states that a person on NI contrabution based ESA, can only receive Employment and Support Allowance for ill health for 365days regardless of how many years they have paid in to the pot. Must after this time be assess for income related ESA a fact they won’t tell you about… your money just stops, you have to request a reassessment for income based. Will only be awarded Income related ESA if the family income is below £7,000 a year. £7,000 a year for two people and in our case three people to live on… My working tax credit takes us over the top of that thresh hold despite my business making zero income for another year. But only just. Because of the tax credits we also do not qualify for school meals for our son and lots of other little bits and bobs that can make the difference. We are left three people living off the wage from a few hrs teaching and our tax credit…
Robbing Peter to pay Paul is becoming a way of life except Peter has no money either😊…

So the appointment for the JCP specialist rolls round, and she is as lovely as ever and tells J about a re training scheme he can do which he may be able to do from home but would most likely be a thirteen week residential course up in Plymouth as there are no centres closer to us that are doing the courses… We have many colleges and a university in Cornwall… Go figure… Or he can go on to work choice who will be able to help him look for work or go self employed or both… But agrees finding a job he can do will be tough…
We come home not much uplifted it has to be said… Me trying to be positive says well think about it at the very least we can go up to Plymouth to see what’s on offer… We’ve made it through the last few years what’s thirteen weeks… J just looks on with a face like thunder not at all impressed…

So at this point I decided I need to look for more work, obviously it needs to be something I can manage with the Fibro and ME, nothing to physical, to emotionally draining or requiring to much brain use as the effect on my cognitive skills that thinking has is huge… (No giggling) So I start looking… And I find a p/t job working for the SU at the local Uni, working to ensure the students get all they are entitled to… I think mmmm might be possible… But it turns out that the hours clash with my teaching so I don’t go for it in the end…
A few weeks later via another campaign I’ve become involved in saving the contemporary Crafts Course at Fal Uni… #saveourcrafts @saveourcrafts. I hear about another job vacancy one that involves teaching ceramics to adults and kids and folks with disabilities, that seems right up my street. It’s a bit far to drive being in StIves but I think we’ll I won’t know if I don’t try, so I decide what the hell I’m gonna try I’m not the best thrower, I’ve not thrown on the wheel for years but I know how to teach it… But I decide to run it past my boss first, I can’t afford to lose the little job I have. As it so happens I had an appraisal scheduled for the following week, so I get to the end of my appraisal which was glowing by the way… 😊 Lol… And I ask her if the college would mind me having a second although technically third job and she says no not at all but I must add that staffing levels at the college are like the Mary Celeste and if you want more hrs you can have them… So I said yes… Obviously needing to build up slowly but yes…
We went on to talk about other things including J… I had to disclose J’s cancer way back in 2011 when he fist got ill because it might have effected my ability to work. Caring for cancer patients being what it is…
We talked about his op that never was and his employment problems and she suggested he come to work for the college basically doing what I do… He’s got the same degree as me, he has experience as a carer and a non medical helper all he would need is a teaching qualification which he could do while teaching, and we don’t care if he teaches from standing up, sitting down or moving about and we already know about his health problems… I was gobsmacked, astonished but very grateful that not everyone sees disability as a problem. She gave me some info to see the college career adviser and told me to get back to her if J was interested…

Needless to say J was interested…
We had an appointment with the careers adviser and apart from J having to wait till next September to start a PGCE its all looking kinda good… He will need to do some voluntary work and shadowing but assuming that all goes ok it’s looking promising…
And here’s where I need advice he needs to do the PTTLS course first or what ever the equivalent is (it had a name change) Preparing to Teach in Life Long Learning Sector… And that is a thirteen week course that is not funded… It’s going to cost around £600 for him to do it and we are so beyond broke its not funny… How do we fund it? Has anyone got any inside funding knowledge that might help?

So this is where we are… Is there light at the end of this very dark tunnel or am I just seeing things….

Hugs to you all Dxxx
Ps to see the whole story so far select the access to work category and scroll to the bottom…


Festive thoughts from Jayne Linney… Keep up the good fight people… Dxxx

Originally posted on jaynelinney:

In this my last post before the festivities kick in I want to take a look at a quick overview of the Truth Campaign and our reasons for pursuing it.

It all began on April 14 2013, when Debbie Sayers and I wrote an open letter, to Esther McVey regarding her persistent misuse of facts and statistics, we sent this with over 800 signatures, including 4 MPs, a month later. On the back of this, we started our first petition (27/5/13) to the Work & Pensions Committee demanding they :Hold IDS to account for his use of statistics.

We eventually received a response from the DWP correspondence team to our letter, which failed to even acknowledge the questions we had asked, but she did reply to Michael Meacher  and Tim Loughton MPs, who had supported our letter with the same reply.

By June 12 our first petition had hit the magic 100,000 signatures…

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Sue Marsh on #IDS

Sue Marsh has chipped in on the issue of IDS and his inability to tell the truth with an excellent open letter to John Bercow. Please follow the link to her blog as WordPress decided I wasn’t allowed to reblog or comment on her blog… I must have been a naughty girl at some point who knows… please go vist her blog and read the open letter… Thank you Sue Marsh for this excellent contribution to the truth campaign.. Dxxx


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