I am republishing here the newsletter from the benefits and work community to help give it a wider airing.

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Find out how to subscribe now. (Open access)

14 heart attacks and failing kidneys – you’ll soon be fit for work

How sick do you need to be before the DWP will admit that you are probably never going to work again?

Very sick indeed if your kidneys are failing, as two recent decisions show with brutal clarity.

Paul Mickleburgh, one of the world’s longest surviving kidney dialysis patients is hooked up to a dialysis machine for five hours, three days a week.  He’s also had cancer and pneumonia and  suffers from spontaneous internal bleeding, brittle bones a twisted bowel and agonising joint pains as a result of his renal treatment.  He’s had four failed kidney donations.

To top it all off, Paul has had 14 heart attacks in the last five years and believes his last attack was caused in part by the stress of trying to deal with the DWP.  Sadly, patients with chronic kidney disease are actually more likely to die from associated heart disease than from kidney failure itself.

In spite of this, Paul has been placed in the work-related activity group,(external link) meaning that he is someone who is expected to return to the workplace in the reasonably near future.  Paul’s request for this dreadful decision to be looked at again came back with the same result – he should be moving towards a return to work.

We hope that Paul is now appealing . . . and that his heart will stand the stress.

More desperate still is the story of Karen Sherlock, a disability activist connected to the Spartacus campaign, whose kidneys were failing and who was waiting to be put on dialysis.  In spite of her very serious condition, Karen was placed in the work-related activity group, meaning that her benefit would soon stop altogether because of the time limit on contribution-based ESA.

Karen spent many months fighting that decision.  Two weeks ago she finally won her exhausting battle with the DWP and was placed in the support group.

This week she died of a heart attack.

According to a fellow campaigner (external link):

“She was terrified. Beside herself with fear. She lived her last months desperately scared that her family would not survive the onslaught it faced.  . . . The system failed her and she spent her last precious moments in this world fighting. For herself, for her family and for others.

“She was one of us. She was Spartacus. And now she’s dead and she died in fear because the system failed her, because cruel men refused to listen and powerful men refused to act.

“She spent her last months fighting for the “security” of £96 a week and the reassurance that it couldn’t be taken away.”

Last month, in a speech to Work Programme providers at the  Institute of Economic Affairs (external link), Chris Grayling the Employment minister explained why the Work Programme is not making the profits for the private sector that had been hoped for.  His explanation as to why the much prized incapacity benefit to ESA transfer claimants – for whom providers get paid £14,000 when they place them in work – are in short supply, touches directly on the fate of Karen Sherlock and others like her:

“We have more people fit for work, and moving to JSA. We have more people needing long term unconditional support than expected. And those in the middle [work-related activity] group, who would expect before too long to be mandated to the Work Programme, have proved to be sicker and further from the workplace than we expected. So it will take far more time than we predicted for them to be ready to make a return to work.”

In other words, providers will have to be patient, but eventually those £14,000 a time claimants will be handed over to them . . .  unless, like Karen Sherlock and an increasing number of other seriously sick people, they die before the bounty can be claimed.

FREELANCE WELFARE RIGHTS WORKERS
Combined with an increasingly brutal benefits regime are cuts in funding to the very agencies who can help claimants fight the worst of these decisions.

In May of this year, the Legal Aid Bill became law. This means that legal aid for most welfare rights, housing, employment and debt issues will be withdrawn completely next year, causing a huge cut in the income of many advice agencies and law centres.

Coupled with ongoing cuts in support to the voluntary sector from local authorities, this means there will be a dramatic fall in the availability of free advice – or indeed advice of any kind – and a considerable increase in the number of advisors who are out of work or working only part-time.

Last October we asked Benefits and Work newsletter readers what they thought of the idea of a website where freelance welfare rights workers could advertise their services.  The response was overwhelmingly positive, but with concerns regarding such things as cost, privacy and the reliability and genuineness of advisors.

After much thought, we’ve now set up a website to take the idea of a freelance service forward.  At the heart of the new site is an Advisors Code of Conduct which we hope will deal with many of the concerns you expressed.

We’d be very grateful if you could take the time to take a look at the Code and let us know your thoughts, by commenting on the Help and Advice Plus blog (external link).

If we do decide to begin the service there will be no charge for at least six months to advisors who use it, whilst we pilot it.

OTHER NEWS
As always, there’s much more news in the members area than we have room for in this newsletter, including:

A protest by disabled workers and a horse outside the offices of Disability Rights UK

GPs at the British Medical Association unanimously call for the work capability assessment to be scrapped

Many thanks to everyone who has sent in news stories over the last fortnight, including: Beverley Hymers, John Pring, Jim Allison, papasmurf, Crazydiamond.

GUIDE UPDATED
Following new guidance on the use of aids and appliances in relation to the work capability assessment, we’ve updated our guide to claiming ESA on physical health grounds.  We’re also currently working on updating the guides to claiming DLA for children, following the national roll-out of new claim packs.

GOOD NEWS FROM THE FORUM – OPEN ACCESS LINKS
Finally, as always,  a selection of good news from the forum:

Placed in ESA Support Group with no medical assessment
“Thanks to the great information on this wonderful site i was automatically placed in support group and no medical”

DLA middle rate care and low rate mobility and ESA Support Group
“Thank you all once again the guides were priceless in my case”

Migrated from IS to ESA Support Group without medical assessment
“Thank you all at benefits and work for the excellent guides”

DLA success, high rate mobility and middle rate care
“Many thanks B&W, well worth the subscription”

Placed in ESA Support Group and not called for medical assessment
“just wanted to say thank you to this site & the online guides”

Son’s DLA successfully renewed after reaching age 16
“Have used your fabulous guides and my son’s DLA has been renewed for post 16”

From IB to ESA Support Group for 3 years
“I cannot thank your website enough, I studied your information guides and know that this would not have happened without your help”

Moved from IS to ESA Support Group without medical assessment
“I just wanted to say thanks for the helpful guides you offer.”

Indefinite award of high rate mobility and middle rate care DLA on renewal
“Just proves your guides really do work as all I did was follow the guide to the letter”

Transferred from IB to ESA Support Group
“Thanks Benefits and Work”

Placed in ESA Support Group for 2 years
“Thank you to benefits and work for helping me word the form in the correct way”

After 3 years of “hard struggle” placed in ESA Support Group
“a big thank you to you all for your help and advice”

0 points to Support Group on revision
“I am a bit disappointed if I am honest as I wanted to be in the WRAG group.”

Successful DLA claim for high rate mobility
“I couldn’t have done it without using your guide to claiming DLA. I can’t thank you enough!”

You are welcome to reproduce this newsletter on your blog, website, forum or newsletter provided it is properly attributed to www.benefitsandwork.co.uk

You can also read this newsletter online. (Open access).

Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
Company registration No.  5962666

I had been feeling a bit healthier for a couple of months, but seem to have lapsed back somewhat. Over the weekend I had a bit of a flair up which was hard going as we had 3 gigs in a row. They were all pretty well received too. Its difficult to know how much exercise is the right amount as well as keeping mobile and active helps quite a bit but particularly activity’s like driving and using the computer can make seem to make it worse.

Hopefully the bone density test and scan will provide some answers on the best course of action. Having had industrial quantity’s of Vitamin D3 for 9 months the bone should have built up somewhat but others so afflicted say it can take a couple of years to really get fixed, if you have micro-fractures, which is what makes it painful. Anti-depressants might help but my Dr seems to be a bit set against it, though I am not sure why.

The damper and colder weather seems to have made it worse too. Keeping mobile but not lifting anything too heavy with a fair amount of stretching seems to help.

Paradoxically on gig on Sunday night, although I arrived feeling very rough, I was bouncing around like a spring chicken by the end. It was a very physical gig too, and quite energetic, so maybe its the endorphins perhaps easing it?

The cumulative effect is that my mood is quite low,(sort of in the sub-basement really). We are having a band rehearsal a bit later on today, to fine tune a couple of things that are slightly rough in performance. If we weren’t it would be a temptation to go back to bed and stay there believe me.

The sky has that grey cloud cover that I remember from family holidays as a child when we would stay in some leaky caravan park, often in North Wales. We went to Betws y Coed a few times, and everything in memory seems more colorful somehow. Proust and all that don’t you know?

I also seem to have reached a musical hiatus as I have usually been quite busy with writing and recording stuff, apart from Elephant Shelf and the Delta Ladies, but find that I have very little enthusiasm though I did do a rough version of an idea that came into my head as I think it might grow in to a half-decent song, it was really an effort to get on and do it. That I think is a sign of the depression manifesting itself. I do have a routine of practice and learning stuff which I manage to keep going with though.

I think I do need a fairly radical change in the way I do things,as I feel I am on a downward spiral getting used to achieving less and less. Its possible that I need to get to know a few other people. I have plenty of social contact a lot of the time, but don’t have a friend a couple of doors away or a 5 minute drive that I can nip in and talk too, so there is a certain sense of isolation. I also need to start clearing out stuff from the flat as a prelude to selling up and moving. London has not got too much appeal these days and I rarely gig in London so its not exactly critical. I not thinking of moving too far though. Somewhere just outside the M25 would do and there are a few possibility’s.

There is a a lot of redundant stuff that needs to go though…

I worked out that over all the websites and music sites that I have material for download on I have about 195 different songs (excluding stuff with Elephant Shelf and the Delta Ladies) and instrumental works available as downloads, that over the last ten years or so. My first download was on line around 2000 though I had my first website in 1998. I did my first digital recording around 2003, when I got my first decent PC. On one level I think I may have gone as far with it as fiat allows for the present and a change of scene/environment is necessary.

I might even paint something again, I am rubbish at the visual arts but have enjoyed the process in the past.

What I would really like to do when I move is have a room where I can put all the studio stuff, as presently it occupies about 1/3rd of my lounge and its becoming a bit impractical to do stuff without tripping over things

My older sister has been in hospital having a bowel cancer op.

She has been quite unfortunate with health generally having had thyroid problems from the age of 16 and a lot of other problems in between.

We are not generally on speaking terms these days as she has a very low opinion of me.  She recently emailed my other sister and expressed a view along the lines of how unfair it was that we had not been afflicted with cancer so far. We have several incidences of cancer in the family, (including my father who died a couple of months after taking early retirement at the age of 63), so there is no guarantee that I have escaped it.

She had a fairly successful career in nursing then health visiting and finally as a lecturer at Old Street until medical retirement, she also had a daughter in fairly good health and was married and has a very comfortable house too. Her husband died of cancer a couple of years back. Out of us 3 siblings she was the successful one, with the proper education and so forth. She also gets a very generous pension, which to be fair she worked very hard for.

I did a lot of odd jobs for her a few years back, I think perhaps she has forgotten all that. I hope that the op works out for her of course. Its very difficult to deal with the level of resentment that she projects on to us as she perceives that I and my other sister lead charmed lives. The reality is that for me the last 10 years have been have been the only point in my life where I have succeeded in anything much really. Getting 1 decent decade out of 5 is not that bad going really though.

Phew, a bit hot for me, but nice to see the sun.

More of the usual stuff really. Some pretty good fun gigs, mostly Delta Ladies duo gigs that went very well and a few at new venues that have got us repeat bookings so that’s pretty good so far.

I also have a date for my bone scan which will answer a few questions with luck. I am still getting a a bit of pain but less frequently and the more we gig the more exercise I get I suppose that must help.

Last night we returned to what used to be our home turf at a place called the Harringay tavern in Crouch End, it was a slow start but the second half was quite lively and even got a few people singing a long to some of the original tunes. We also told a few shaggy dog story’s and got a laugh or two which we do quite a bit on gigs now.

Latest bulletin from my sister just out of hospital is that (“I caused them considerable trouble over the last few years”). This is a truly remarkable achievement having not seen them for about 7 years or so, and I can only attribute this to my ability to channel the dark side of the force. Perhaps also attempting to play New Orleans style Piano also gives you the power of voodoo, though I am not convinced as none of these attributes has yet allowed me to win the lottery.

Not too bad a month so far a few good gigs and the sun is shining a little, so I am making the effort to take a little more exercise to help ease the back problems and stuff. Touching wood my back seems capable of withstanding regular accordion playing now so I am starting to work up a few more tunes on it, and its not seeming half so alien as it was at first. Its not an instrument to play after midnight on a quite night though as it kicks up a fair old racket that makes the violin seem quiet by comparison.

This year seems to be whizzing past at hell of rate thus far but with plenty of interesting stuff going on. I need to get back to the DR’s soon to see how the old bones are progressing as well. I am building up a bit more stamina but some of our duo gigs have been mini-marathons with often more than one encore. Once you have gone over the 2.5 hour mark it can get a bit knackering.

Saturday night we were at the Global Cafe in Reading. We do play one other venue in Reading regularly called the retreat but this was a new one for us with a younger audience than our usual demographic. We will be back there later in the year and its a really nice place to perform in. This year could be our buzyiest for gigs by the look of things mostly with the Delta Ladies. Doing a 2 hour plus show as a duo is quite demanding at times. We are also going to be putting some new material in to soon as well. So we need to learn that.

Currently we have two albums almost finished. One is the Elephant Shelf Album and the other is an album of swing standards. Once those are out of the way we need to start recording the Delta Ladies Album. Not much time to get bored by the look of things.

We will be back at one of our favorite gigs in a couple of weeks at the Bellvue in High Wycombe and strangely it will be coinciding with their beer festival. How spooky is that then 😉

“Heavier-than-air flying machines are impossible.” (Lord Kelvin, president, Royal Society, 1895)

“I think there is a world market for maybe five computers.”
(Thomas Watson, chairman of IBM, 1943)

“There is no reason for any individual to have a computer in their home.” (Ken Olsen, president, chairman and founder of Digital Equipment Corp., 1977)

“The telephone has too many shortcomings to be seriously considered as a means of communication. The device is inherently of no value to us.” (Western Union internal memo, 1876) “Airplanes are interesting toys but of no military value.” (Marshal Ferdinand Foch, French commander of Allied forces during the closing months of World War I, 1918)

“The wireless music box has no imaginable commercial value. Who would pay for a message sent to nobody in particular?” (David Sarnoff’s associates, in response to his urgings for investment in radio in the 1920’s)

“Professor Goddard does not know the relation between action and reaction and the need to have something better than a vacuum against which to react. He seems to lack the basic knowledge ladled out daily in high schools.” (New York Times editorial about Robert Goddard’s revolutionary rocket work, 1921)

“Who the hell wants to hear actors talk?” (Harry M. Warner, Warner Brothers, 1927)

“Everything that can be invented has been invented.” (Charles H. Duell, commissioner, US Office of Patents, 1899)

15th February 2012

The video from the Cambridge folk Club gig Delta Ladies gig has come out fairly well. Although though it was not a huge attendance the audience is quite responsive and the playing is OK so that will hopefully help with the profile. I am rather pleased about that. The present relief from the cold weather is also a blessing and its supposed to last until the end of the week at least. I used not feel the cold to much, but this year has been something else. February is traditionally my moping around month and this year has not been any different so far. Yesterday was a typical day, a couple of hours on the piano in the morning then over to N London to do some over dubs for one of our recording projects where we are adding a guest player. Then off for an Indian meal (starters only) and a quick drink and a chat at one of the venues we play that’s also our local by proxy, though its a long way from here. they were having a Valentine themed evening, but it seemed the same as usual to me except our favorite ale had just gone off. In bed by about 3 then up at 09:30…

One of the Uk’s fastest rising ethical fashion designers Ada Zanditon’s new collection Aw12/13 Simia Mineralis shown at London Fashion Week Somerset House this week February 2012. Music is by North London’s Elephant Shelf – a new tune in retro clothes ‘Ooh Bop Sh’Boogie’

The phrase feeling the cold in my bones has finally found meaning for me, being out a couple of nights recently where the thermometer hits -6C has been an experience, and one that I shall try to avoid in future.

We had two gigs this weekend, one at Cambridge Folk Club on Friday where the audience was a bit sparse possibly due to the Arctic conditions though they seemed to enjoy it. We videoed the gig to use for promotional purposes so that was a plus. I didn’t feel were were connecting with the audience as we did the last time we played there but we got some good feedback in between sets.

Saturday night we were in St Albans and had a lively night in one of the many pubs that has live music and we had a good crowd and played a very lively set.
just as we arrived I got a full on back ache that spread to my ribs and shoulders and had a very uncomfortable first set, but things eased a bit by the second set perhaps due to a pint of real ale consumed in the first set. We had a few friends in the audience that night so it was quite a jolly affair by the end.

A woman we have met at our gigs a couple of times, asked what we expected to be doing a in few years time, as in how would we be developing our music career. I managed to stifle the urge to say “Hopefully not starving, if we are still alive”.

She was talking about using project management techniques, and I waited whilst she went through the whole spiel. I then explained that I was no stranger to gant charts and that forward projections are pretty irrelevant. A bunch of semi-geriatrics is not likely to get signed to a record deal and there is no Mr big waiting around the corner with a fist full of dollars or even a pocket full of 50p’s. She did also ask if we had a manager, and in my experience unless they are also taking on the role of investor there is virtually nothing that they can do that we can’t do for ourselves, or are all ready doing.

A couple of years back an independent producer offered to do a record with us. He seemed to think we had money to burn and that we would tip some on his personal bonfire. A lot of people are so desperate to get heard that they are willing victims for this sort of stuff. He told us our songs were weak and he being a songwriter could write better ones for us. Now there’s a surprise ! If you have a product that people want they will pay you for it but a lot of the music industry at the bottom works by taking your money and the deal you get satisfies your vanity but nothing else.

Now anyone can get music on Itunes and everything else worldwide, but you may only sell a few pence worth. A lot of people still get sold on the fantasy of course…

A bit of madness from the first Elephant Shelf Album…

More Elephant Shelf Live at BATF 🙂