Wednesday, 14 September 2011

What an outrage!

Apologies for the following blog post that is not my usual type of post, and will be a rather long one.  Please bare with me and take time out to read.  Thank you in advance.

Many of my followers and regular readers may already know of the health problems I suffered totally out of the blue - especially as I was a happy-go-lucky, healthy woman of 38 - when all of a sudden I was told after a routine x-ray for yet another chest infection and pains in my back, I had a tumour in my chest cavity.  I had to have major surgery to remove the tumour , which included having a full bi-lateral thoracotomy on my left hand side - this basically meant that I had an operation to cut my chest open between two ribs, then clamped open while my lung was deflated in order to remove the tumour.  It was actually found to be growing on my intercostal nerve and pushing against my lung - which, if left any longer would start to fuse with lung tissue (according to the surgeon).
Unfortunately, during the operation and because it had involved removing part of my intercostal nerve, I suffered nerve damage and now take a heck of a lot of pain killers each and everyday which still have to be increased in strength from time to time.
During this time, I tried to go back to my full time job but was in too much pain and ended up having to leave work due to ill health.  I am still an outpatient at the Pain Clinic where I regularly have to see a pain specialist and sometimes an aneathatist.  In November 2010, I went to see a rheumatologist who diagnosed Fibromyalgia and Benign Joint Hypermobility Syndrome.


For me, symptoms range from chronic fatigue where by I cannot stay awake for days; lower back pain when standing or after short bursts of activity, pain in my elbow joints, ankles, knees, my left shoulder area (feels like its going to drop off - and is really painful as I write this).  In the morning, if I've had 6 or more hours sleep my body totally locks up and my OH has to lift me off the bed with my hands and get me to a sitting position, then lift me to my feet so I can [crawl] to the bathroom (I won't divulge what I can't do next).  Going up and downstairs is painful - I have to go down the stairs by putting both feet on the same step at a time - I've had to have another hand rail installed. On really bad days, I have to get about the house using a stick, but always take a stick out with me now, and cannot make it around Tesco for example without the pain becoming chronic that I just want to sit down on the spot i'm in at that moment.  Most of the time I cannot drive my car because my ankles and feet hurt, or my shoulder hurts or I cannot turn round enough because of the pain... I used to LOVE driving - and  feel like a degree of my freedom has been taken away from me.

There's more - but you get the general picture.  Back in January, I put in a claim for DLA then in March I had a visit by a Doctor from ATOS - the agency contracted by the Government as part of the Welfare Reform.  The Doctor was in my house for all but 20 minutes.  Made some (very wrong) assumptions (which I am contesting) and came to the conclusion that I was unlikely to be in need of care or have any mobility issues. I was refused DLA and am now appealing - I have got to attend a tribunal in a court house (not one of those big ones though), just to justify why I have appealed against the decision of a Doctor who was probably always going to say I was't worthy.

I have subscribed to a website called Benefits and Work who assist people in getting what they deserve and inform subscribers (or members) of the latest news or legislation that may affect our claims etc.

I received an email today with regard the news of how the government is making underhand movements to pass the reform bill despite the fact that the House of Lords have many questions still unanswered about the governments proposals etc.

Please read the below newsletter from Benefits and Work - it will take two minutes... - thank you in advance.


Urgent call to action
After an incredibly constructive debate yesterday in the House Of Lords the government appear to be concerned about how many Lords had significant concerns about the Welfare Reform Bill, even those Lords who in principle supported the bill had major questions they wanted answers to.


For a bill of this size and importance, convention dictates that the next stage of the bill should be kept in the main chamber of the House of Lords for debate. It's particularly important the bill be continued to be debated in the main chamber as disability access to the smaller committee rooms is very limited and people will not be able to access the committee rooms to exercise their democratic right to observe the passge of the bill from the public chamber.

At 3.30pm today the govermnent are tabling a motion to move the grand committee stage of the bill into one of the smaller committee rooms. Presumably the government are hoping that by moving a bill into the committee rooms it will be harder to scrutinise - there won't be enough space in any of the committee rooms to allow for all the Lords to participate, let alone for us to scrutinise online or attend in person.

This is an outrage - the government are clearly concerned by the level of queries and opposition to the Welfare Reform Bill highlighted by yesterday's debate and wish to quietly sideline it to a committee room where they hope it will pass with less opposition. Tabling the motion for the afternoon following PMQ's is also an underhand trick as it means it will be harder for us to object through the main stream media.

This is our call to arms. This bill affects us, our families and every aspect of our lives, as well as the lives of those currently paying into the system in anticipation of protection should they require it. If we can make enough noise in the next few hours the government will be forced to keep the passage of the bill in the main chamber of the house of lords where it can be effectively and appropriately scrutinised by all.

What you can do to help is this:
Please post copies of this blog onto your facebook, your twitter, stumbleupon, wikio etc. Please email it to everyone you know, please talk about this on your own blogs. Email or phone your MP to register your objections, email or phone the house of lords to explain your concerns, email or phone the media, local or national and explain that whether or not people are in favour of this bill, that it is a fundamental democratic right to have it debated in the main chamber of the house of lords where there is space for all who wish to attend and observe. Highlight the injustice and hypocrisy of the governments behaviour in trying to sideline this important bill into a room too small for all the Lords to attend and certainly too small to allow those in wheelchairs, or with guide dogs, the very people most affected by this bill to be able to observe from the public gallery.

If we make enough noise before 3.30pm today the government will have to drop this underhand tactic and the Bill will continue to be debated in the main chamber of the House of Lords where everyone who wishes to can attend and observe.

UPDATE 13.30
The email addresses to contact are:

anelayj@parliament.uk – this is the chief whip to whom you should send the email and cc it to the others.
bassams@parliament.uk – opposition chief whip.
freudd@parliament.uk – David Freud


You can read the original post on the Broken of Britain blog.

Does this affect you or your family or someone you know?  Please pass it on for their sakes as they may be the next one to suffer from the governments decision or like me, have a visit from a Doctor from ATOS who is there to prove you don't need help, not to see that you get it.

Thanks for reading this very unusual and pictureless blog post - it isn't my usual kind - but something that is really important to me.


I haven't been able to blog since my previous post due to the very problems I mentioned in my opening paragraphs.  The very problems the Doc from ATOS didn't acknowledge but affect me on a day-to-day basis.  So much so that I don't know what I'm going to wake up to - and to avoid having to be helped out of bed and to the bathroom and sometimes off the toilet - I tend to only have four hours sleep - because the better the nights sleep I have - the worse I feel the next morning.  I go to bed at silly o'clock then get up about 4 hours later with my son for school - then spend the rest of the day falling to sleep.  This affects my day to day life and has now impeded on my hobby of crafting and cardmaking.


Thanks again for reading - I'd love to hear from you if you have a comment on the above.


Paula x x x

7 comments:

  1. Paula this is dreadful and i'm sorry to say i think it happens regularly. i think the day to day living that you face each day should have been told to all thos greedy politicians who had two house, moats duck houses and idiotic stuuf like that as they were locked up, whic would have been the correct thing to do but i only know of 1 who was. i don;t know what to say as its atrocious. louise xx

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  2. its a disgrace paula. i had a similar bad experience myself after having severe post natal depression and suffering a breakdown after having my little boy in 2008. i was diagnosed with 'agoraphobia' but still didnt qualify for an assessment in my home. i was told if i didn't attend an appt (30 mins drive from my home) i would be entitled to nothing! after months of treatment i managed to attend the appt with my husband (which was extremely stressful for me), the assessment was appalling and didn't assess my needs in the slightest - not surprisingly i was then refused any benefits. my gp was appalled and helped me appeal but i did not feel able to attend court so i was forced to accept their decision.
    this but an enormous financial strain on me and my husband as i worked full time as a nurse and earned 50% of our household income.
    i am very lucky that i have managed to return to work and manage day to day (i have by no means a normal life, but am grateful for what i have).
    michelle. x

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  3. oh paula its one thing to be told you have a tumor and go through major surgery and come out the other end with continuing issues, but its something else when people that dont know you, dont see your pain to justify that you cant have the help you so deserve
    it angers me, it really does, it also frightens me to a degree
    i hope you get your answers in the court and the outcome is good for you
    as for the government - please dont get me started!!!

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  5. Sorry I deleted the first comment cause I had more to say!
    Damn it why can't these people get it through their heads that we aren't lying about the disability or the pain! I went through a similar problem when I had face cancer and had to have extensive excision of the tumors, scraping of my skull, and 8 hours of reconstructive surgery to make me look human again. I had issues with the 5th and 10th cranial nerves and take meds for the neural problems and pain from the damage now. I was diagnosed with FM and CFS/ME last year and went through the same problems you have been going through and appealed the Social Security Admin here in the states to the the disability started. I saw 2 SSA doctors and a psychiatrist that said that they could see I was unable to function normally and I finally was approved and told that the SSA feels I have a severe disability that qualifies me for benefits. That was after a year of fighting them they finally came around. I hope none of them or their families gets the disorder and has to go through what we do. I hate it that I can't work, can't drive, shop, go to games, travel etc like I used to. It has really rocked my world!

    I hope you get your disability benefits soon!

    Vickie

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  6. Oh Paula...words fail me my lovely! The sad thing is that I am not surprised by all of this :-( I cannot begin to understand how you are feeling let down by the 'system'. That doctor should have stayed at least an hour...and why can't they just take a GP's letter anyway????? The 'system' is sooo messed up...there is a man living along the road from me who has a 'bad back' yet I see him lifting heavy shopping, bending etc with no trouble & he gets fulls benifits grrrrrrr!!!! I truly hope that you get your benifits soon as the stress is certainly not helping you. HUGS xxx

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Thank you for your super scrummy spangly comment and for spending your valuable time letting me know what you think...

Crafty hugs, Paula x x x

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