I mustered all my energy….

So I took the brave step …. I had contemplated leaving ringing them for a couple of weeks…. but to be honest I needed to get the ball rolling….

I read through the letter again…. I needed to have a few things to hand to help the process…. standard stuff … but in my somewhat foggy state evade me at times….. plus I wanted to write down anything I needed to remember…..

So all bits of relevant things gathered together just easy to hand …. deep breath… make sure I ring the right number…. don’t want to inadvertently ring the wrong one and cancel my claim….. I do wonder why they would actually want you to ring them to say you don’t need help anymore….. given they are quite threatening in the letter about you must contact them …. anyhoo I digress ….

I have pen poised an ready for action….. I think to myself maybe a cup of tea would be good at this junction…. my voices particularly Bonny Tyler ish today…… I realise that I’m implementing the avoidance tactics…. so I give myself a little talking to…. I mean how bad can this be …. yes I’ve managed to get myself in a bit of a spin….. but tea has saved the day…. onwards Mcduff ….

Right phone in hand …. off we go…. I’m prepared for Vivaldi’s four seasons…… my call started at 11- 43 …. so we are off….. it’s not Vivaldi’s 4 seasons… it’s green sleeves so much better I feel…. so a couple of press this number… an hey presto a real human…. the chap I spoke to was lovely… went through things slowly… was helpful and respectful… explaining the process… what would happen next … plus the timeframe….

I can’t tell you how much I dreaded this initial call…. but am thankful that it’s over an the next process is the form filling….

I’m going to blog about how this is impacting on my day to day …plus how the impending assessment will affect me…. given this process is going to take valuable energy….. I genuinely want people to understand the impact this has on us….

I can absobloodylutly tell you I’m not in a happy place ….. this process can’t be over soon enough for me ….. thank you for reading this … hopefully others who are going through it don’t feel so alone …. love an light ❤️

So it begins…

My journey to be able to live… I’m being asked if I want to continue to get the help because I’m to sick to work… in truth I’m to sick to actually achieve daily functions … I’m talking about eating food an getting dressed.. let’s not discuss the washing situation.. or hair washing…

I’ve been waiting for this letter to drop on the mat for over two years… this is me going from (DLA) a lifelong award because of my illness to PIP the new benefits for the disabled…. it’s broken down into how much extra help you need to have to function in the real world… well in theory….

So I will explain at a later date because this blog is going to chart my journey…. how the process is causing real and serious harm to people….

I’m a fairly tenacious person.. I don’t let things affect me to much … but I’m going to be honest…. this has me feeling sick to the pit of my stomach… why you ask… I mean everyone says if you are genuinely ill you will be fine … just tell the truth… ummm that’s the rub …. it would seem that no matter how long you have been sick or how sick you are … or how much support you have .. or how many doctors you see ( I’m mostly to sick to go to the doctors) it makes no difference….

So I’m playing the waiting game now… I have to ring the DWP to tell them I definitely need to continue to receive help as I’m to sick to work… I will write more as things happen…

I did actually notice that I’m slightly relieved as the process has started… so the impending doom has lifted.. I’m in it now… it’s a rollercoaster…. can you imagine how it feels…. I know I’m not alone… thousands have gone before me …. but at this moment i feel very alone….

Thank you lovelies for listening to me … onwards and upwards ❤️

Karina Hansen 8 (updated): the aftermath continues

valerieeliotsmith

GOOD NEWS: I originally published this post in June 2018. I am re-publishing it today (10 August) as there has been an encouraging development since then. Thank you to Bente Stenfalk (see below) for the updated information. Original post follows the update.

20161208_142745_resized Karina in November 2016 shortly after her return home

UPDATE August 2018

On 9 July 2018, psychiatrist Dr Charlotte Emborg visited Karina at home. Dr Emborg was appointed by the court in Holstebro to make an independent assessment of Karina’s health and her capacity to manage her own affairs. It appears that Dr Emborg’s provisional report indicates the following important points:

  • Karina does not suffer from any psychiatric illness
  • She understands the role and purpose of her court-appointed guardian and she would like him to be removed from her case
  • She is capable of managing her own finances

As a result of…

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Karina Hansen 8: The Aftermath Continues

It’s truly shameful the way she has been treated… thanks for the update Valerie x

valerieeliotsmith

20161208_142745_resized Karina in November 2016 shortly after her return home

Regular readers of this blog will already be familiar with Karina Hansen’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of myalgic encephalomyelitis (ME) patients generally. For new readers, and those needing a more detailed reminder of her story, there is a full summary at the end of this post.

Karina is a young woman from Denmark who became ill with the severe form of ME as a teenager. She was being cared for at home by her family but, in February 2013, she was forcibly removed by the state authorities and confined in an institution for three and a half years as a de facto psychiatric patient.  Her family members were not allowed to visit her and she was subjected to highly inappropriate treatment.

She was eventually allowed to return home in

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One letter details the fierce opposition to another of Theresa May’s government appointments

We defiantly need to stop him…

Mr Topple

PRESS RELEASE:

Over 65 Deaf and Disabled People’s Organisations, campaigners and mental health professionals have signed a letter opposing the appointment of Professor Sir Simon Wessely to lead the independent review of the Mental Health Act as announced in Theresa May’s speech at this year’s Conservative party conference:

“Dear Prime Minister,

We are writing to urge a reconsideration of the decision to appoint Professor Simon Wessely to lead the independent review of the Mental Health Act as announced at the Conservative Party conference on 4 October 2017.

A review is needed to address mental health injustice, yet Wessely’s body of work on ME (or “chronic fatigue syndrome”) demonstrates his lack of honesty, care and compassion for patients. His unsubstantiated claim that ME is driven by “false illness beliefs” has led to patients being labelled as hypochondriacs, treated with contempt by some in the medical profession and stigmatised by society. His…

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PAUSE-REVIEW-REFLECT: towards a bigger picture?

Clear and concise.. thank you Valerie for helping so much … rest and enjoy x

valerieeliotsmith

January 2017 - a new world order? January 2017 – looking for the RESET button.

PAUSE

This year will bring some changes which mean I need to step back from my research and advocacy work. This work has covered a number of different topics and this is reflected in the sub-heading of this blog “Law and health; due process and civil society“. However, my main focus has been on issues facing the international community of people who live with the illness myalgic encephalomyelitis (ME) – sometimes also conflated unhelpfully with the condition “chronic fatigue syndrome/CFS”.

I have lived with ME since 1981 (possibly longer) and began to learn about its history and pathology from 1989, when I was first diagnosed. In 2009, I started increasing the scope and range of my research and in 2012 I set up this blog in order to publish my work on the so-called “Secret Files on…

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Karina Hansen 7: Update and Urgent Appeal

And so to getting help.. let’s stop doctors thinking they are able to get away with this kind of treatment.. donate if you can lovelies xxx

valerieeliotsmith

KarinaHansenStockPicRegular readers of this blog will be familiar with Karina’s horrifying story (as detailed in my series of posts) and with the often appalling treatment of ME patients generally.

For new readers, and those needing a reminder, there is a full summary at the end of this post.

********************

The current situation (December 2016)

On 17 October 2016, after three and a half years of involuntary detention as a de facto psychiatric patient in a Danish clinic, Karina Hansen (pictured above left from her schooldays) finally returned to her family home from which she had been forcibly removed in February 2013.

Karina is very happy to be back at home. She and her family are gradually adjusting to their changed circumstances and trying to process everything that has happened to them. However, it is inevitable that the traumatic events of last few years have taken an enormous toll on…

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Getting about…the least of his worries!

Wonderfully executed… disability isn’t about a set of criteria.. it’s about human beings…

Carole...

http://www.telegraph.co.uk/news/politics/9263502/Iain-Duncan-Smith-Im-not-scared-to-light-the-fuse-on-disability-reform.html

images (3) This article has been playing through my mind overnight.  

Especially these sentences:


“It’s not like incapacity benefit, it’s not a statement of sickness,” Mr Duncan Smith says of the benefit. “It is a gauge of your capability.
“In other words, do you need care, do you need support to get around. Those are the two things that are measured. Not, have you lost a limb?”

“But, can he guarantee that every person in a wheelchair will still get this benefit?
“Yes,” he says firmly before adding: “But, again I can’t jump the gun and say it, but my assumption is yes.”

Now I want to add something to this…

From this I get the impression that they believe being in a wheelchair is all about the ability to ‘get around’ Living with, caring for and speaking for my paraplegic husband I can quite categorically state that ‘getting…

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Alem Matthees: how an Australian’s FOI request busted open a UK science scandal

It’s great to see FOI uncovering the lies ..

ME Australia

by Sasha Nimmo

In September 2016, Queen Mary University of London (QMUL) was compelled to release the data from the 2011 PACE trial, a trial which examined the effect of graded exercise therapy and cognitive behavioural therapy against standard medical care.

West Australian Alem Matthees was one of many people who wanted a closer look at the information from the study.

In March 2014, he filed a UK Freedom of Information Act request for the data, but Queen Mary University of London (QMUL), the institution that sponsored the PACE study, denied his request. On 18 June 2014, Matthees requested an internal review, but QMUL again denied his request. On 15 Dec 2014, he filed a complaint to the Information Commissioner (IC). In October 2015, the IC ruled in Matthees’ favour that the researchers were required to release the anonymised data of the study. QMUL appealed but again lost their appeal in…

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Professor Steven Lubet’s Letter to Simon Wessely.

Breath of fresh air…

Utting-Wolff Spouts

We had to provide a link to this superb letter written to Simon Wessely by Professor Steven Lubet concerning the PACE trial and the former’s enthusiastic support of said study despite its innumerable flaws,

http://www.thefacultylounge.org/2016/11/an-open-letter-to-dr-simon-wessely-defender-of-the-pace-study.html

We particularly like the paragraph,

‘You compare the PACE Trial to an ocean liner plotting a course from Southampton to New York, and express satisfaction that it made the trip “successfully across the Atlantic,” despite course corrections along the way.  But surely you realize that a randomized controlled study is not supposed to have a fixed destination, but rather should follow wherever the evidence – or the current, to maintain the metaphor — leads.  You thus virtually admit that the PACE Trial was always intended to reach a particular result, and that adjustments along the way were necessary to get it there.’ 

Especially pertinent re Wessely as his extreme bias towards the biopsychosocial model of…

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