The Cupboard is Bare....? (Welfare Reform)

I wanted to bring your attention to a post recently made by Matthew on his blog, Indigo Jo Blogs, regarding the reforms to Disability Living Allowance which are about to be pushed through by the government. His feelings on the subject very much mirror my own.

The government state that there is 'no alternative' to making cuts to DLA ... yet when you look below the surface of their proposed reform, the problems are immediately evident - both (more obviously) to the quality of life for people affected by this reform, and (less obviously) for the future financial security of the country. Cutting benefits for disabled and chronically sick people will inevitably cause costs elsewhere to shoot up, potentially costing the country more than the cuts will 'save'. This is ignoring the fact that the disability benefits are the least affected by fraud, (According to the DWP's own statistics, only 0.5% of DLA claims are in fact fraudulent!!!!) and therefore are the least needing of reform in the first place!!!

Matthew says it all so much better than me in my current massively fogged state, so I'd refer you to his post ... excerpt below.

Excerpt from The Mail, Gerada, & The Alternative to DLA My main reason for writing this, though, is to explain why disability benefits are not something we can just do away with by saying “the cupboard is bare” or “we can’t afford it” ... next time you hear a Tory (or Lib Dem) politician tell you “there is no alternative”, remember that there in fact is — wholesale re-institutionalisation. Only, the buildings have been either demolished or sold off, and building new ones will cost an awful lot of money. Caring for people with disabilities or the chronically ill in nursing homes or long-stay hospitals costs more than supporting them to live at home, and is less satisfactory for them as it imposes an institutional lifestyle, even if it does not lead to outright abuse (which it sometimes does). There is, in fact, no way to reduce the disability budget without imposing a lot of extra bureaucracy, a huge institutional care burden, or a lot of suffering (and manifestations such as public beggary) which would prove politically intolerable.

You may also want to follow the #SpartacusReport hashtag feed on Twitter, regarding the report just released by a group of disabled people, based on freedom of information requests, showing that the governments claims that the disabled community was supportive of their welfare reforms, was actually a misrepresentation of the truth. You can read an easy read copy of the Spartacus Report, officially known as the Responsible Reform Report: here.

I'm so thankful to, and proud of, the people who produced this report, and who have done such an amazing job of getting it into the public eye! Two of the main helpers have actually been hospitalised by the effort this has cost them, and several are now extremely ill. It was a marathon and amazing effort by a group of very sick and disabled people, who are amazing activists for our cause!!! I've embedded a video below, posted on Diary of a Benefit Scrounger, asking for our support in keeping the Spartacus report in the public eye, because so many of the team who put this report together have become too ill to continue working on it at this time.




Today I heard that the Lords voted, yesterday, to overturn the one-year time limit to contributory Employment and Support Allowance proposed by the government - this is a major victory for all disabled people in the UK!! Please check out today's post on Diary of a Benefit Scrounger for the latest updates to the Spartacus Report Cause, and info on what you can do to help. :)

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

The Cupboard is Bare....? (Welfare Reform)

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Challenges Ahead!!

Yikes!!! A whole month since my last blog! No apologies - that would be too much of a cliché, ha! Just an explanation ....! The gynaecology appointment a month ago really took it out of me, and between the affects of that, and the need to rest up because I had the cardiology appointment coming up too, I had little choice but to stay more or less offline. I've now had my first cardio appointment, which went ok, I think - but again, the after affects haven't been very nice. My eyes / light intolerance have stepped up a notch and I'm having to wear a mask for at least several hours a day, and the rest of the time I spend in dimmed lighting. My pain levels are pretty bad too, and now not only do my feet go grey and blue when I'm upright, but my legs go grey right up to half way up my thigh!! Kind of scary to be honest. I've really wanted to update you guys on how things are going, so I'm basically going to post the note I posted on Facebook after my appointment, with some additions I've been working on a little at a time ever since. Sorry, no pretty pictures today, and apologies in advance for all the long sentences! I'm just too tired to make it read more easily.


Ok, so - here's the story....


I saw the registrar (the consultant was really ill with a virus he didn't want to give me, so he just popped in to intro himself then left it to the reg to do the work, lol. I thought that was quite nice of him to be honest. Both the doctors and the nurse who sat in were really lovely, so that helped an awful lot with my nerves! I was so worried that my M.E. diagnosis would cause them to not hear anything I had to say without prejudice. I can't be sure, but I think maybe it was ok - the registrar said that he had a friend with M.E. so maybe that went in my favour!?!

Unfortunately the clinic didn't give me somewhere to lie down when I got there, and I was dumped in a busy waiting room with noise and lights and craziness. Not a good start. I was sitting for so long that by the time they took my blood pressure and pulse, they'd sort of plateaued out and weren't too bad (I don't know about others with Orthostatic Intolerance, but after a couple of hours my blood pressure seems to adapt, though the blood pooling is often still there) and there isn't time in one short appointment to keep me standing for longer than a couple of minutes to take readings. He seemed to take my own recordings at face value though. (he could easily have decided i was either mad or a faker, so...!)

The outcome of the appointment was that he's ordering a tilt table test (Which I'm honestly seriously scared of even though I know it has to be done. It's not just the physical strain of it, but also, I think it's going to be quite triggering being strapped to a table with little or no control - brings up some abuse issues. Blah!) and a 24 hour holter monitoring. Not sure when those will be done - but he's not left me with nothing in the meantime. He's prescribed insane amounts of sodium chloride (Sustained release tablets, 600mg, TWO tablets FOUR x a day - yikes! - Apart from anything else, how on earth will I remember that/fit it in??!!!?? Lol, I can barely remember to take meds 3 times a day, and that's with multiple alarms set on my phone, without which I'd be screwed!!) and said to continue drinking a minimum of 3L of water per day. It's a really high dose of salt that they've prescribed, but because I know it can be tough on your body, I decided to stagger it, starting on a lower dose and gradually increasing. I'm relieved they wanted to start some treatment straight away though, (and I know salt is basically the first line treatment in many clinics, so I was prepared for that) because knowing the NHS it may take a while to get the tilt table sorted. I suppose there's even a chance I could have improved a fair bit by the time I get it. I guess that would be a little annoying because if the tilt table test shows nothing interesting, can they even diagnose me??? But then, that would mean the treatment is working, and I guess that's the most important thing anyway, right? Hey - a girl can hope! ;)


The aftermath hasn't been pleasant, as I said ... and I think it's been worse than after my gynae appointment (not surprising considering a) I was looked after better at that clinic, put somewhere quiet and dark to lie down while I was waiting, and b) I had been still recovering from the first appointment!) but I do feel relieved to have finally seen a cardiologist - sheesh, it's taken long enough!!!!!!!! (I've only been having these symptoms in varying severities for 15 years HA!)

The next few months are going to continue to be challenging, to say the least. I have another gynae appointment this month. My Disability Living Allowance re-assessment forms have arrived, sigh, so I'm going to have to have appointments with an advocate to fill in the forms - and unfortunately the one I normally see has just gone onto maternity leave so I have to be re-referred and have a new advocate assigned! (Mind you, I'm lucky the department is there at all, because last time I saw my advocate, their budget had been cut significantly and she was concerned they couldn't last much longer!) I'm pretty scared about the assessment, because it's hard enough to get through it even without the major shake up going on with the benefits system right now - huge amounts of people are being denied benefits on reassessment, and if I get the wrong assessor, or medic, I could be seriously stuffed!! I have zero trust in the system now, let alone the people actually working within it!

Then we're still fighting social services to try to get direct payments (to pay for Anna to care for me) - they're on the verge of making the crappy decision that I don't need Anna in particular to care for me, and because she lives in the same house, they will only give me money to get an agency carer - which would cause me more harm than good! My GP isn't helping my cause - my social worker has repeatedly contacted the surgery asking for information from her on my condition and how it affects me, but she hasn't bothered to reply!! (And this on top of the fact that she still hasn't organised the vitamin d regime or any of the countless other outstanding things - and we can't even get through to the local patient advocacy office on the phone!) Then of course there'll be the tilt table test at some point, and a cardio appointment on the 20th December, which basically sucks because Christmas is going to be a write off for me after that. Last year I barely made it through a few hours with family and the after affects were awful! An appointment right before that .... I'm not even sure if I'll cope with dinner with my family.


Frustrating!


I feel so overwhelmed by all this happening in such a short space of time, and I have no idea right now how I'm going to cope with it all. But really, I have no choice but to cope, so I'm just trying to take it literally one day at a time. I'll try to keep posting as and when I can - though that's going to be further complicated because I have to send my laptop back to the company I bought it from because it's all but died. I should be able to borrow my mum's sometimes but it's just that extra step that'll make it harder to get online. I just hope it can be sorted swiftly!!


I'd love it if any of you guys who haven't yet joined me on facebook would connect with me there too - that way I can keep in touch a little easier - just click the link on the right sidebar & send me a friend request with a note letting me know you came in through my blog. :)

I hope you're all doing ok - I've missed spending time with you all! xxx

Reader Question for People With POTS : Which treatments have worked for you, and which haven't??

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

Challenges Ahead!!

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UK Disability Benefits Stress

So many of us in the UK are bracing ourselves for stress, upheaval and financial problems because of the new changes to the benefits system underway right now - even those of us who have already been awarded benefits aren't safe from these changes, as reassessments are being issued to many sick & disabled people. I wanted to write a post about it because it's such a huge issue for us all right now.

I've had major problems myself over the years with both claiming and keeping my benefits - for example, I had to go to appeal and then tribunal to get my Disability Living Allowance award, because the doctor the DWP sent out to see me didn't 'believe in ME' and lied about me, and was completely prejudiced against me on the medical form. (He went so far as to call my ME consultant the 'so called Professor'!!) Thankfully when I, at great pain to myself, appealed the decision and took my case to tribunal, it was overturned - and the DLA agency & the doctor in question came out looking a little silly! I've had a constant battle since then, though, just to keep the benefit, but I've been lucky enough to have found an advocate from a welfare rights department in our local government. How long I'll have that, I don't know, as their funding is under review (yet another knock to those who are genuinely sick!) - but it's been invaluable up until now!!

With the changes going on in the system, I like many others, are feeling the strain. I'm so afraid that my benefits will be reviewed and taken away - particularly because of how my illness is viewed by so many in the UK - and that I'll have yet another fight on my hands that I'm not well enough to fight. I think it's absolutely wrong what the government are doing ... and so many people and families are going to be so terribly affected by these decisions. I find it appalling that so few politicians stood up for the rights of disabled people in their constituencies while the debate was ongoing!!

It makes me so angry, too, that the people who falsely claim benefits are causing so many problems for people who are genuinely sick and disabled!


I wanted to highlight a service I've found which helps people in the UK with claiming disability benefits, and who fight for the rights of disabled people in this country, and write resources and news updates on what's going on in the UK benefits system : Benefits & Work.

There are two things I'd advise anyone applying for benefits or having problems getting the benefits they are entitled to, to do & that is to join Benefits & Work, and to find out if there is a welfare rights advocate service in your area. Finding an advocate is particularly important for people who are too sick to fill out their own forms. My advocate comes to my house and fills out the forms with me - and is able to accompany me to court hearings, etc, if needed. It's made a massive difference to my life having someone fighting my corner in this area!! If there is no specific welfare rights service near you, you can also go to the citizens advice bureau for help - but fair warning, they can sometimes be difficult to get an appointment with, as they're so busy and understaffed. Most CAB's aren't able to do home visits, either, which can be difficult for those of us who are severely ill.

Reader Question: What has your experience of the UK benefits system been like?

You can find help with applying for UK disability benefits at Benefits & Work!

You can follow Benefits & Work on Twitter to be notified when they release new articles & web content.

You can now find Benefits & Work on facebook - click like to follow them and to promote the cause to your friends & family. :)

You can also visit the Benefits & Work Forums to get help & information, & to discuss current issues with disability benefits with other members.


Below is a sample of the Benefits & Work newsletter, which keeps us up to date with things going on in the UK. You can sign up for it for free on their site.

A Sample of the May Edition of the Benefits & Work Newsletter


Forced labour scheme begins

As what is beginning to look more and more like a war on claimants hots up, last month saw the introduction of a forced labour scheme. (Members only article). 

Many thousands of claimants will be obliged to work for up to 30 hours a week for a month for no wage whatsoever. There is no limit to the number of times claimants can be forced onto the scheme. Those who fail to comply will lose their benefits for 13 weeks for a first offence and 26 weeks for a second offence.

The scheme is aimed at JSA claimants, but with so many people likely to fail the new work capability assessment, that may well include thousands of sick and disabled claimants who are deemed not to be trying hard enough to move into work.

The propaganda war is also becoming more vicious and ill-informed as the DWP feeds easy to misinterpret figures to the press and then looks the other way as hate-provoking misinformation fills the tabloids.

For the claimants on the front-line, there's also the shocking news of the lack of disabled access at many Atos medical centres, which most claimants are obliged to attend for their work capability assessment. An astonishing one in five centres don’t have disabled access and Atos lists just one dedicated disabled parking space for the use of around a million claimants a year.


Fighting Back


The government aren’t having it all their own way, however.  Below is a quick round-up of  anti-cuts actions over the coming month that you may want to support.


A national week of action against Atos is scheduled to begin on 9 May with a picnic and party in Triton Square, home of their head office, at 2pm.

On May 11 thousands of disabled people, their friends and families will be holding a march and lobbying parliament to protest at cuts to benefits and services.

The Justice for All campaign, which is fighting to save free legal advice, is holding a day of action on 3 June, which they are hoping members of the public will take part in. 


PRESS

Radio 4’s You and Yours programme is working on a report about the work capability assessment which may at least present a more honest picture of what is really happening to sick and disabled claimants.  As part of the feature they are hoping to talk an Atos health professional – anonymity assured.  If you are one of the Atos staff who read this newsletter, why not contact You and Yours in confidence?

You and Yours are also hoping to hear from people who have received a reassessment letter and are awaiting a medical or who are appealing an ESA decision.  More details here.

Elsewhere, a freelance journalist writing a piece on the forced migration from incapacity benefit to ESA for One in Four, a mental health service users magazine, is keen to hear from anyone who went through the Aberdeen or Burnley pilots or who is going through the reassessment process now.



New Resource for Professionals


Welfare rights expert Mark Perlic – who has provided free resources for this site in the past - is publishing an updated ninth edition of the invaluable DLA and AA caselaw pack in June of this year and is currently taking advance orders.  More details from this flyer.

Mark is also running DLA and AA case law training days in Birmingham and London in September and October of this year.  More details from Mark’s website.



Good News From the Forums


Finally, in spite of the all those bank holidays over the last  few weeks, we’ve still heard from a number of members with good news about their claims and appeals.

Double tribunal triumph as Atos medical report “wholly discredited”

“I came out of the Tribunal with 15 points for the ESA and an award of DLA Higher Rate Mobility and Middle Rate Care and I have to admit an immense feeling of euphoria!”

“Thanks to the information and help guides available on this fantastic site . . . the ATOS medical report was . . . wholly discredited.”


Support group and highest care DLA on initial claim

IB and ESA appeals won

From WRAG to support group on appeal without attending hearing

Award increased to higher rate mobility and middle rate care on renewal.< From lower to higher rate care and lower rate mobility on appeal for 10 year old

Support group on initial claim

Successful DLA appeal

Successful IB appeal

WRAG on appeal

ESA from 6 to 21 points



Pass It On

You are welcome to reproduce this newsletter on your blog, website, forum or newsletter.

You can also read this newsletter online.


Good luck,

Steve Donnison

Benefits and Work Publishing Ltd
Company registration No.  5962666

If you’re not already a member, find out how to subscribe to Benefits and Work and give yourself the best possible chance of getting the right decision.

I'd love to hear your reply and I know it'll be valued by other readers too! I always try to respond, please just be aware that it can take me some time to find the energy to do so as I've been particularly ill recently and struggling to get online. Thanks for reading! :)

UK Disability Benefits Stress

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