Monday 22 August 2011

Atos moves to shut down criticism

It doesn't surprise me that Atos are threatening legal action to websites that are reporting their displeasure or helping people through the medicals. I can't imagine my blog will attract much attention, but if it does, I shouldn't think it'd take much for Google to take it down. Ideally I'd love to have the opportunity to talk to someone at Google, and have them on side, but being an American company, and this a British problem, I don't see it happening somehow.

As the article linked in the title says, I too think I have only recoded known facts. I'm not sure without checking, and I'm exhausted at the moment so that's not going to happen. The article reports the facts succinctly, thus:
  • Atos Healthcare carries out Work Capability Assessments for the DWP.
  • The contract is worth approximately £100 million per year.
  • There has been a sharp rise in people found fit for work
  • There has been a sharp rise in people appealing that decision
  • 40% of those that appeal, win, rising to 70% with legal representation.
  • Although the decision over “fit to work” lies with the DWP,a government review found that the DWP are institutionally incapable of overriding the Atos Health Care Professionals. The Atos recommendation is, in effect, the decision.
  • Atos employ Health Care Professionals to carry out the assessments. HCPs are a mix of doctors, physiotherapists and nurses. Only people with certain problems will definitely see doctors.
  • Atos use their own Lima computer system to record the patient’s answers. Lima has been widely criticised.
  • The HCP fills in Lima by choosing keywords and statements from a list and then justifying them.
  • An Atos recruiter said “We don’t call them patients . . . We call them claimants.”

Another letter to my MP - an afterthought

I'm not sure why this suddenly occurred to me last night. I kept drafting it in my head and couldn't get to sleep for ages because I was itching to write it. I suspect that because it would be showing a lot of faith in the little sheep who claim ESA and DLA, the idea will be shot down before it even gets anywhere. I hope at least that my MP will read it though ... I want to plant a little seed.


Dear MP,

I am writing to you again in reference to Welfare Reform. Something occurred to me, though I am uncertain of how well it will be received by the minister concerned. When someone is called up for the medical assessment I think they should be able to have the option to postpone it under mitigating circumstances. If they are already going through a stressful life experience, they should be able to state it to the DWP, providing evidence.

I’ll explain why this occurred to me. While as you know, I do appreciate that you cannot comment on my personal experience, I can! And it makes a good example.

When I was called up for the medical assessment I was in the process of a divorce, putting the house up for sale, and recovering from an extreme relapse during which I thought I was going to die. I have read time and again that divorce and moving house are considered to be at the top of the list of stressful life experiences. It was actually the medical assessment I found most stressful. Because of the medical assessment I returned to self harming, and came extremely close to suicide. I apologise for being so blunt. Had I not already been going through three stressful experiences at the same time, it would probably not have affected me as badly as it did.

Obviously I do not believe someone can be excused a medical assessment due to illness. However, being in the process of divorce, or moving house can be easily proved, as also can various other stressful experiences. I am aware that the DWP would be placing trust in people to inform them when they were then available for assessment, however I do not see that this is any different from the trust placed in people to inform the them of when their circumstances change. Personally I am so afraid of being penalised by the DWP that I would not dare to not inform them if my circumstances were to change.

It would be a small almost human touch on the behalf of the DWP to a public who perceives them as treating us as numbers. I would be grateful if you would pass my comments on again.

Kind regards,

Olana.

Thursday 18 August 2011

Sign your life away .. please

Got a bee in your bonnet? Want to kick up a fuss about something, but kind of quietly without anyone noticing? Let's sign some petitions! One of the members on one of the M.E. groups has been doing a grand job of finding petitions about Atos Healthcare. None of them are worded ideally, but if we get enough signatures on all of them hopefully the message will get through to parliament that something needs to be done.

Responsible department: Department for Work and Pensions
The Atos Group should be Terminated. They do not carry out fair assessments, they ask you set questions set by this Government, they don't listen and above all fail in their duties towards people who are genuinly disabled and mentally ill. You as a Government need to listen and stop messing with peoples lives. Otherwise the votes will go the other way.


Responsible department: Department for Work and Pensions
For the chronically sick and disabled, the current system of assessment is inadequate and makes many peoples conditions worse and causes undue stress and upset. I, as a person with primary progressive multiple sclerosis, would ask the government to stop using Atos, who are driven by profit. This obviously creates a conflict of interest. To once again rely on specialist evidence from doctors and consultants as opposed to tick box evidence from non specialist privately employed individuals.


Responsible department: Department for Work and Pensions
Stop the stressful benefit tests to those claimants on DLA (disability living allowance), ESA (employment and support allowance) and for current incapacity claiments and for alll those claiments on passport benefits relating to incapcity benefit. Changes have already been made after the independent Harrington review last year, which concluded the tests were not working as well as they should and needed to be made fairer and more effective. The report noted the "high rate of appeals" against findings, and said that cases overturned by "first tier" appeals between October 2008 and August 2009 were "consistently around 40%".


Responsible department: Department for Work and Pensions
Stop the unfair and cruel re-assessments via ATOS for disabled people currently on Incapacity Benefit. ESA is a flawed benefit, and puts terrible pressure and stress on vulnerable people, putting people who cannot work on lesser benefits and applying sanctions. Let disabled people decide for themselves if they can work, they and their carers know best.


Responsible department: Department for Work and Pensions
The undersigned ask that the House debate the notion that David Cameron should apologise for misrepresenting incapacity benefit claimant figures by not including results of successful appeals or those who have been excluded from the process because it is either too distressing for them or because they cannot physically attend an assessment. The undersigned also ask that the debate considers whether French private IT company, Atos' role in assessments should be ended and the process handed over to British medical professionals who are not driven by targets or profits.


Responsible department: Department for Work and Pensions
We are concerned by reports of a high number of genuinely ill and disabled people, including those who are terminally ill, wrongly being declared fit for work by ATOS medical assessors. These errors cause hardship and distress to some of the most vulnerable members of society and cost the tax payer large sums in appeals. We therefore petition the government to look into the process of these medical assessments and ensure that the necessary changes are made to create a fair system that protects the sick and disabled.

Wednesday 17 August 2011

Atos Complaint Form

I'll give them their dues. They got this to me immediately. If you wish to complain to Atos use the following email address: customer-relations@atoshealthcare.com
Say you wish to complain, and give them their name and address so that they can mail the complaints booklet to you.

Having had a quick read through I don't think we actually need the booklet to be honest. I've typed it up so that you can decide for yourselves.




Why do I need a medical examination?
The Department for Work and Pensions ask Atos Healthcare to arrange and carry out medical examinations if they need more medical information about people claiming benefits. The purpose of the examination is to provide a medical opinion about how your illness or disability affects you in everyday life. A fully registered, specially trained and approved health care professional will talk to you and, if necessary, complete a physical examination.


What happens following the examination?
The health care professional will complete a medical report for the office dealing with your claim and the Department for Work and Pensions will use this as one source of information when looking at your claim.


Are you unhappy about your benefit decision?
If you are unhappy about the decision made by the Department for Work and Pensions you may ask them to reconsider their decision. If you want to do this you should contact the office dealing with your claim, contact details will be shown on your decision letter.


Do you have any comments, complaints or suggestions about our service?
We will treat all people who undergo a medical examination fairly and equally. Your views on the service we provide are very useful in planning improvements, so if you have any comments, please do not hesitate to let us know. (Please use the form attached to this leaflet).

We are always very pleased to have appreciative comments, which of course we pass on to the staff concerned. Any suggestions you may have for improving services will be studied with care.


Are you unhappy about your medical examination?
Our responsibility is to arrange your appointment, ask a health care professional to conduct a medical examination and provide a report to the office dealing with your claim.

If you are unhappy with any part of our service, or simply feel we could do things better, please let us know.

We want to improve the service we provide and your comments will help us achieve this.


How do you complain?
> Please use the form attached to this leaflet or you can write or email us quoting your name, National Insurance number and the date of your medical examination.

> If you would like to discuss your complaint over the telephone, please contact a Customer Relations Manager who will be happy to call you back.

Customer Relations Manager
Tel: 0113 2309175
customer-relations@atoshealthcare.com



Who can help you make a complaint?
Anyone working for Atos Healthcare can advise you about making a complaint, including the health care professional conducting the medical examination.

In addition, other people who can help include:

> Citizens Advice Bureau
> Welfare Rights Workers
> A friend of family member.

If someone is to contact us on your behalf, please remember to give your signed consent to that person, either on the attached form or by separate letter.


What will happen to my complaint?
Our aim is to deal with your complaint fairly, consistently and in a timely manner. We will acknowledge your complaint within 2 working days and keep you update throughout our investigation.

We hope to respond to your complaint within 20 working days. However, our investigation may take longer. This is because to conduct a thorough investigation we may need to:

> Obtain a copy of the medical report from the office dealing with your claim.
> Obtain information from the health care professional or other employees involved.

On completion of our investigation into your complaint where it is found that the medical report may contain some inaccuracies, we will notify the office dealing with your claim. Please not that Atos Healthcare cannot change the decision on your benefit or request a further medical examination. This is for the decision maker in the Department for Work and Pensions.


What if I am not satisfied with your response to my complaint?
Please contact the Customer Relations Manager, explaining which parts of your complaint you feel have not been dealt with to your satisfaction. The Customer Relations Manager will arrange for a senior manager to personally review the investigation into your complaint and undertake a further investigation, if appropriate.


Is an independent review of my complaint possible?
Yes, when our investigations are complete, you may request that your complaint be referred to an Independent Tier.

The Independent Tier is independent of Atos Healthcare. Their role is to review how we have handled your complaint, how we conducted our investigation and ensures that we have responded to all the issues you raised.


Can I take my complaint further?
Atos Healthcare provide medical services on behalf of the Department for Work and Pensions. If you continue to be dissatisfied with the service provided by Atos Healthcare the office of the Department dealing with your claim can provide contact details of Departmental Chief Executives.


Please note: The Independent Tier is not able to comment on the outcome of your claim to benefit. However, where appropriate, the review will include a medical assessment by an independent medical practitioner about the quality of the medical report provided to the Department for Work and Pensions.


About you
(If you are a representative please provide details of the person you are representing, their authorisation and contact details for yourself.)

Title:
Surname:
Other Names:
Date of Birth:
National Insurance Number:
Contact Address:
Daytime Phone Number:
Representatives Name (if applicable):
Authorising Signature:
Your Signature:
Date:

Please tell us your comments, complaints or suggestions overleaf.



Tell us your comments, complaints or suggestions




Please continue on a seperate sheet of paper if necessary.

Tear off this form and hand it in or post to your Customer Relations Manager, Atos Healthcare, Block 1, WingG, Government Buildings, Otley Road, Lawnswood, Leeds, LS16 5PU


Monday 15 August 2011

"ATOS Doctors Could Be Struck Off"

This article has raised my hackles once again. As usual I have copied it below, in case the article is removed from the website.

The part about the doctors is actually fairly short, and probably just an attention grabber. I'm not sure whether the doctors are under investigation for improper conduct during the medical assessments or with their own patients. 

In light of something I have noticed in this article I am quite glad that I had not actually got round to making the complaint to ATOS about my assessment yet.
Citizens Advice told the Observer it was compiling a dossier showing the problems being faced by those assessed by Atos staff, who can be nurses or physiotherapists in cases where there are no potential neurological disorders.
So ... why was I examined by a nurse? M.E., or CFS as I am signed off with by my doctor, is classed as a neurological disorder by the World Health Organisation. As such we should be being examined for neurological disorders. Evidently ATOS does not consider M.E. to be a neurological disorder. Do they know something they would like to share with the rest of us?
The rest of the article simply enraged me. I have read time and time again many accounts similar to the few described in the article. The article, whilst being on our side, does seem to make it sound like they are one off cases. They really aren't! Anyone who lets their assessor know that they got to the medical on their own steam is automatically disqualified. I know the assessors make you do things that you find painful from personal experience too. I really need to make that complaint!

"Twelve doctors employed by the firm that is paid £100m a year to assess people claiming disability benefit are under investigation by the General Medical Council over allegations of improper conduct. The doctors, who work for Atos Healthcare, a French-owned company recently criticised by MPs for its practices, face being struck off if they are found not to have put the care of patients first.
The Observer has found that seven of the doctors have been under investigation for more than seven months. The other five were placed under investigation this year following complaints about their conduct.
It is understood that the majority of allegations concern the treatment of vulnerable people when the government's controversial "work capability assessments" were carried out, but the GMC refused to comment on individual cases. The development will add to fears over the pace and radical agenda behind the government's welfare-to-work policy, which led to protests in Westminster in May by thousands of disabled people. It will also raise concerns about ministers' commitment to Atos Healthcare, which was recently granted a three-year extension on its contract.
The government has repeatedly publicised figures showing that the "vast majority" of claimants for employment support allowance (ESA), which has replaced incapacity benefit, are fit for work. But four out of 10 of those who appealed the decision by Atos - whose parent company is run by a former French finance minister, Thierry Breton - to deny them benefits are successful on appeal, a process that costs the taxpayer £50m a year.
Last month Atos, whose staff assess around 11,000 benefit claimants a week, was savaged by the cross-party work and pensions select committee after it found that many people had "not received the level of service from Atos which they can reasonably expect".
MPs further claimed that a combination of the company's conduct and the test itself had prompted "fear and anxiety among vulnerable people".
One GP who attended an Atos recruitment fair told the Observer she feared doctors could become "agents of the state" who were deprofessionalised by involvement in a system that did not make patient care its first concern.
Campaigners for the disabled seized upon the development, claiming the government needed to go back to the drawing board. Richard Hawkes, chief executive of the charity Scope, said: "If the government wants to get disabled people off benefits and into work then it needs to get its assessment right. The test should be the first step on the road to employment. But disabled people's confidence in the work capability assessment is extremely low – and today's news will send it to rock bottom.
"The test is massively flawed. Now it appears that it is being carried out by a large number of doctors who are under serious investigation."
Neil Bateman, a solicitor who handles ESA appeals, said on two occasions his clients had been successful because, among other reasons, the doctor assessing them had qualified in Romania and registered with the GMC but had not been licensed to practise in Britain.
Citizens Advice told the Observer it was compiling a dossier showing the problems being faced by those assessed by Atos staff, who can be nurses or physiotherapists in cases where there are no potential neurological disorders. It said it regularly found inaccuracies in many of the medical reports featured in ESA appeal papers that could affect people's chances of receiving benefits. It also found a lack of consideration for those being assessed.
A spokesman said a barrister who was unable to practise because of cancer and lymphoma had described the assessment as being like an "interrogation" led by a computer. The assessor moved the client's legs, which caused her great pain, even though the client had warned that this would happen. In another case a claimant with learning difficulties who went for an assessment was found fit for work because he had found his way to the assessment centre on his own.
When asked about this by Citizens Advice, he reluctantly explained that he had got up very early, taken the bus to the town centre, and then kept asking passersby for directions. He couldn't follow their instructions, so he would show the letter, walk in the direction they pointed, then ask again until he arrived.
Two doctors employed by Atos have already been taken by the GMC to an independent panel for adjudication on their fitness to practise. Dr Alexandros Mallios, who it was claimed had not carried out a proper examination of his patient during an assessment, was cleared by the panel last October. Dr Usen Samuel Ikidde, who qualified in Nigeria, was given a formal warning in January, to lay on his records for five years, after he was found to have worked for Atos while on sick leave from an accident and emergency department.
An Atos spokesman said: "Atos Healthcare is committed to providing a high-quality, professional service and requires these standards of all its employees. While we cannot comment on individual cases, any complaint made about an employee is taken extremely seriously.
"In addition to our own rigorous internal investigations we will co-operate with any external investigation to ensure all facts are properly established and the appropriate action taken."
The Labour government introduced work capability assessments in 2008 when it replaced incapacity benefit and income support for new claimants with employment and support allowance. The government has accelerated the changes and started retesting all 1.5 million incapacity benefit claimants to see whether they are eligible for the new benefit.
A GMC spokesman said: "We can and do take action to remove or restrict a doctor's right to practise if there have been serious failures to meet our standards."

Tuesday 9 August 2011

Recording not allowed

Pfffft.

For months we've been recommending that people record their ATOS Medical Assessments, because of how badly the assessors are misrepresenting what happens. It seems that they are refusing to allow assessments to be recorded, unless we go to rather extreme lengths to do so. I know that some people have successfully recorded their assessments. Whether they did so clandestinely or informed their assessors I do not know. I suspect that the guidelines for recording assessments have come out as a reaction to people like myself advising others to record them. I also suspect that the reason they are being unreasonable is because they already know that their assessors are misrepresenting what happens. Very frustrating.


The below is taken from a post on Where's the Benefit:
"In a response to a Freedom of Information request made at the end of 2010 the Department of Work and Pensions provided the official guidelines to ATOS staff regarding recording of assessments. The most important parts are quoted here.
"Such a request can only be agreed with the prior consent of the HCP, and then only if stringent safeguards are in place to ensure that the recording is complete, accurate and that the facility is available for simultaneous copies to be made available to all parties present. The recording must be made by a professional operator, on equipment of a high standard, properly calibrated by a qualified engineer immediately prior to the recording being made. The equipment must have facility for reproduction so that all parties can retain a copy of the tape. The responsibility for meeting the cost of the above requirement rests with the claimant"

"It is for Atos Healthcare, in conjunction with their legal advisers, to determine the action to be taken in the event of a claimant making an audio or video recording without the prior knowledge and consent of the HCP, or without ensuring that the safeguards defined above are in place"

"If you suspect a customer of trying to film or record an assessment the following action should be taken

Advise the customer that such action is not permitted, explain why not, and ask them to switch the device off. If the customer refuses to comply:
  • The assessment should be suspended
  • Inform your site manager and/or medical manager immediately" "

Monday 8 August 2011

Annoyance

I've been participating in surveys for The Office Of National Statistics over the last few months. I don't mind. I don't think I'm interesting, but I do like surveys! Last week the lady interviewing me told me that her niece had had M.E., and that she is now better. Knowing people with M.E. and knowing what families are like I'm guessing that she probably isn't completely better, that she is now working again and people around her are taking that to mean she has magically recovered. I hope she's coping ok whoever she is. During the interview the lady listed my health problems, at the end she said that I had a health problem listed as 'other' but she couldn't work out what it was. I said that was the M.E.. She said she had put that under the mental health section, so I explained to her that it isn't a mental illness, it is a neurological condition. I really don't understand how people can think M.E. is a mental illness.

It made me realise that quite probably the reason my parents refuse to acknowledge my illness, refuse to talk to me about it, and don't mention to any of their peers that I'm ill, is because they probably consider it to be a mental illness too. My real mother is mentally ill; they probably figure it runs in the family. 

So, on Friday I sent my step-mother a text message saying 'You know CFS is a neurological / immune condition, not a mental illness, right?'. I've not had a reply. I'm not really surprised to be honest. But that doesn't make it any the less hurtful.

When I started working with one of her artists, I had mentioned in an email to that artist that I'm ill and have to work within the confines of that illness. She responded saying she hadn't realised that I was the one with MS. I had the embarrassment of explaining that I was not actually the one with MS, that that is my sister, and that I have M.E.. Thankfully this artist is aware of M.E. and understands it quite well (she has Lupus herself). I was so embarrassed though. Not only at having been put in that position to start with, but also by the fact that it made it rather obvious that my own family don't consider me to be ill.

It also showed that when my sister was diagnosed with MS my step-mother did the 'woe is me' story to anyone and everyone she knew. I completely expected this. She's the sort of person who tells everyone what she is doing for other people all the time; my sister having MS would be perfect for this. The fact that she did not do this regarding me having M.E. shows that she really has no idea what M.E. is. Anyone who does understand M.E. would be very sympathetic. You'd think that having two sick daughters would get her even more sympathetic ears wouldn't you! 

As silly as it sounds, having someone who draws attention to herself in that manner would actually be very useful; she'd be educating people, whether they particularly wanted it or not, regarding M.E. as she poured her woes upon them. The fact is, obviously, that she did not look into M.E. at all when I was first ill. Again, this does not surprise me. As a teenager my bestfriends mother had M.E. (and sadly, still does); my parents always described her as being weird. A complete lack of empathy or understanding.

The thing that annoys me most about this though, is that if it were one of her own sons; my step-brothers, she would know all about it by now. She'd probably be volunteering in an advocacy group. She has full belief in her sons. They cannot put a step wrong. Me on the other hand; every single thing I do is wrong. They've always told me that I 'make up stories' (I have never ever done so). They still say this to me as an adult belittling things I say as if I were a child. I believe they think that M.E. is just a story, in my head.

I really want to hate my parents for their attitude, but there again I keep wanting to believe that they'll change.

Tuesday 2 August 2011

Contrast! ... Tuesday 2nd August 2011

Yesterday was just basically a really really bad day. It started off ok. I rested for the morning, reading a little and dozing a little, until I got up to go to see my counsellor for an appointment at 2pm. My appointment with him went pretty well .. it's what happened right afterwards that was problematic .. in fact, I wish he'd been there!

When I got back from G's at the weekend there was a card on my doormat from the postman stating that I had a parcel at the depot to collect. So, I decided to park in one of the roads near the post office and go get it. Except, when I parked, I hit the kerb, and my tyre went straight down. I think it burst actually. I stood by the kerb and stared at it for a few moments, then figured that it wasn't exactly going to go anywhere, so I decided to go and have my prescription filled and pick up the parcel before I did anything. I texted G, Ian and Brian asking what I should do.

For some reason Ian's odd answer was that I should buy a cheaper car. This I didn't understand. Brian was otherwise engaged with various daughters, but he at least managed to commandeer the Tesco delivery man and rescue my shopping for me. And G, whilst at work, said he'd come and help me, but because he is so far away I told him not to. I don't want him to have to make up several hours at work later in the week after all.

I do have AA membership, but I was told that they won't come out just to help you with a puncture. Plus it would presumably take them a while to get to me; I was expecting the Tesco delivery and worried about getting home in time for it. Plus I was just around the corner from ATS, where I knew a very nice guy worked. So I decided to go to ATS and see if someone could help me change the tyre. Unfortunately the nice guy wasn't there.

I was walking with my stick. I was exhausted from having gone to the chemist and post office, and then walking through to ATS. I was shaking really badly, and knew that if I didn't eat anything I'd probably pass out or collapse or something. The guy said he'd be able to help in ten to fifteen minutes, so I forced myself to go over to Morrisons and buy a Snickers. It didn't help much.

One of the mechanics went to my car with me. He fiddled around for a bit and then said that he couldn't get the spare tyre out. So I drove my car, on the burst tyre, back round to ATS. He still couldn't get the tyre out. He said that the bolt holding it in had seized up or something like that. He said that my only option therefore was to purchase a new tyre. I looked at him and said 'do I have any choice?'. I was told not. So I told him he'd better take the payment before fitting it, since I really wasn't sure I had enough money in my account. He took the payment, fitted the tyre, and sent me on my way. I actually felt so giddy and sick after this that I should probably not have driven home. I drove carefully.

When I spoke to G he was disgusted at the price I'd paid for a tyre. £108. You see, I do not know anything about cars. The workers at ATS knew this full well, since the very first thing I had said to them was 'I've got a puncture and don't have a clue how to change it!'. So, I had no idea whether £108 was an average price for a tyre or not. All I knew was that they had told me I had no choice.

So, G phoned ATS a little later, asking them for a quote on a tyre of the same kind that I had had, and was not surprised when he was told that he could have one for £60. He then asked them why they had sold his girlfriend a tyre for £108, and told them he was going to complain to head office. I've written a letter to go alongside his.

I'm not quite sure how he feels about it, but I feel embarrassed. I feel really really stupid. I feel stupid for getting a puncture in the first place. I wish I could park properly. I also feel stupid for having been conned. And I feel disappointed that someone I asked for help took advantage when they could see how ill I felt, and I had specifically told them how bad it would leave me financially.

I was very teary eyed last night. Exhausted, but in such a way that I couldn't actually rest. So I settled down to working on my family tree a bit. And surprisingly woke up this morning feeling quite positive, having shaken yesterday completely off during the night.

The sun was shining. I don't know why, I just seem to always feel better when the sun shines. So I decided to have a bath. And while the bath ran I tidied up my eyebrows and bleached my moustache. I can't afford to have Marie sort them out for me now, so figured I should do it myself. I don't look too bad.

Having completed my bathing process I took a phone call from our estate agent. He was asking me whether we would consider £92,000 on the house. The answer was that I knew Ian would not consider it, but he could speak to him if he wished. It seems that the man who came to view the house last week, telling me that he was looking at it for his father, was actually a builder looking at it on behalf of the previous viewers we'd had. I am quite offended at the clandestine approach. But to cut a long story short, we got the offer for £95,000 from them eventually, so have accepted. 

Soooo, now it gets real. It should take about eight weeks for the sale to be finalised. That's eight weeks to pack my house, and work out what we're going to do with everything in it. I think I'm going to G's, but I'm still not entirely clear on it. I'm still in shock a bit. Not really taking it in. The enormity of everything is overwhelming me. It's the end of one life, and the start of another one. I am scared of both.

But hey .. the sun is shining, and the house has sold!

Monday 1 August 2011

Shoot the medical messenger

I'm actually tickled by this one! I've taken it from a link on one of the forums, who have taken it from the ME Association website ... who have taken it from the Sunday Times. You would think that the Sunday Times would have someone with a medical background proof read their medical articles. Apparently not.

This article has been written in response to the piece on Radio4's Today program. Once again they have completely ignored the part by Dr Shepherd, instead focusing on Simon Wessely's interview. And of Wessely's piece, they have focused on one tiny part, the part that annoyed me the most as it happened; the assertion that people with M.E. would rather have an incurable biomedical illness than a treatable psychological illness. For some reason they assume that the reason many people with M.E. are upset at all the research money for M.E. being put into psychological research, is because we do not wish to be labelled as being mentally ill. It seems to have failed to register with them that most people with M.E. are already on anti depressants, suffering from depression, or anxiety. Most of my M.E. suffering friends suffer from at least one psychological difficulty. None of us have any shame in admitting to it though. We simply do not feel that M.E. is also a psychological illness.

But I digress. You will notice that the writer of this article does not actually know the difference between a psychological condition and a neurological condition. I am guessing they think 'it's in the head' pretty much sums it up.

Taken from thefreedictionary.com:
Noun    1.    psychological condition - (psychology) a mental condition in which the qualities of a state are relatively constant even though the state itself may be dynamic; "a manic state"
Noun    1.    neurological disorder - a disorder of the nervous system.

And just to be clear:
nervous system n. The system of cells, tissues, and organs that regulates the body's responses to internal and external stimuli. In vertebrates it consists of the brain, spinal cord, nerves, ganglia, and parts of the receptor and effector organs.

In other words ... it has a biomedical root.

So, after having ceased laughing at the obvious faux pas of this creative writer, I was then perplexed as to how he could ascertain that "some sufferers cling with grim and livid determination to a non-existent biomedical explanation". Read that again; he knows that M.E. has no existing medical explanation? Can he share with us how he knows this? The evidence? The research? Pretty please.

His whole article is written in such a tone as to make fun of people who suffer with M.E.. This is serious and I shouldn't be laughing. I really do hope that most people reading it will see that he obviously does not know what he is talking about; he made a huge mistake in showing his ignorance regarding mental and neurological conditions, and The Sunday Times slipped up badly in not having an expert proof read the article. I am saddened that anyone can think it fair to make fun of a serious condition; I only hope that when The Sunday Times receive a plethora complaints regarding his idiocy that they revoke his payment for doing so.


‘Shoot the medical messenger – see if that’ll cure you’, Rod Liddle in The Sunday Times, 31 July 2011
by tonybritton on July 31, 2011


From The Sunday Times, 31 July 2011 (comment piece by Rod Little)

Shoot the medical messenger – see if that’ll cure you

Medical experts who put forward controversial ideas should investigate their theories and not give in to ‘extremist’ sufferers

They are hopping up and down with fury at the ME Association, the organisation that helps people suffering from what used to be known as “chronic fatigue syndrome” but now, for politically correct reasons, is known as myalgic encephalomyelitis.

Actually, I say they’re hopping up and down, but given the nature of their affliction, they’re probably sitting quite still, really. I meant hopping up and down as a figure of speech. Either way, they’re very angry. The problem was an interview on the BBC Today programme with a leading researcher into the causes of chronic fatigue syndrome, Prof Simon Wessely.

He believes the illness, which results in debilitating tiredness, aches and pains and so on, probably has a neurological basis.

As a consequence, he has received menacing phone calls and even death threats from “extremist” ME sufferers. So too has another researcher, Prof Myra McClure, who says she will now have nothing more to do with the whole business because she’s fed up with being abused.

It seems that those who suffer from ME, which used to be known as yuppie flu, do not wish to be stigmatised as malingering mentals, which is what they fear will happen if the illness turns out to have a psychiatric rather than biomedical basis.

On the ME Association website they don’t actually threaten to kill Wessely; instead you are left with the impression that he is pursuing this line of inquiry for mysteriously infernal purposes, and that he knows nothing about anything, and that he is part of a conspiracy with the whole psychiatric profession and the Today programme, especially Sarah Montague, and the government to cover up the real truth about chronic fatigue syndrome.

Indeed, such is the foaming paranoia on this site that you begin to suspect that if ME does have a neurological basis, it’s probably going to be the least of their mental worries.

The truth about ME, they assert, is that it is the consequence of some sort of weird retrovirus. In other words, it’s a proper illness, which we’ve caught from someone or something; it’s been given to us, it didn’t originate with us.

It is a peculiar and distressing, if not untypical, reaction from people faced with a mysterious and incurable disease. As Wessely himself says, in blank incomprehension, they would rather the disease be the consequence of a retrovirus that could possibly be fatal than be the result of a neurological disorder for which there is at least a form of palliative treatment.

No matter what evidence is marshalled by the likes of Wessely, some sufferers cling with grim and livid determination to a non-existent biomedical explanation; they assume, one supposes, that if it is primarily a mental condition then they have sort of brought it on themselves, and are in some way to blame for their affliction (which is a nonsense, of course).

Their denials and paranoia remind me a little of the reaction of some parents with autistic children who resist with fury the suggestion that this distressing condition might have been brought about partly as a consequence of assortative mating, as suggested by Prof Simon Baron-Cohen, rather than through mercury floating around in the atmosphere or the water pipes, or indeed the MMR vaccine.

The now wholly discredited MMR theory certainly served the psychological requirements of some unhappy parents, being not merely a clear cause but one that was imposed on their offspring by government diktat.

Baron-Cohen, meanwhile, received a lot of flak for this theory but, as he puts it, just because it is controversial doesn’t mean it should not be investigated.

Either way, some people seem to be terribly protective of their ailments, over which they believe they have a sort of droit de seigneur. Research of which, in their ignorance, they disapprove is seen as part of some plot to do them down and consequently underplay their suffering, and they decide its proponents must be vilified.

Sunday 31st July 2011

ADULT CONTENT: Only the last paragraph, which isn't particularly explicit anyway :)

I've spent the weekends at G's. It's been an emotional and confusing weekend.

On Thursday evening G made a comment on the phone that really upset me. He'd been drinking, and presumably had forgotten that the exact same comment had upset me before. He called me a typical Southerner. Don't get me wrong; I am in no way ashamed of being Southern. It upset me that he can use something integral about me as an insult, something I cannot change, and upsets me that he thinks being Southern is a bad thing to start with. He says it's just banter, but to me it is not, and he has to learn that. So I spent Friday feeling upset and hurt; obviously he was at work so I couldn't speak to him about it, and I wasn't sure whether he even wanted to see me after the way I spoke to him.

Then during the course of the day I spoke to my dad on the phone. A threefold upsetting phone call. First of all, he and my step mother were supposed to put a little money in my account. They had, but the amount they had put in was not the amount I had expected. I am struggling so extremely badly for money at the moment, and had eaten only an Angel Delight on Thursday, and nothing at all on Friday, because I'd basically run out of food. I was upset at what seemed like their trying to get away with giving me less money than had been agreed. Secondly, when speaking to my Dad it was apparent that he was somewhere extremely noisy as I was struggling to hear him. I asked him where he was; eventually he told me he was on a train. When I asked where he was going he kept changing the subject. They were on their way to my nieces birthday party. I don't expect to be invited; they live several hours away from me after all (and I can never remember when any of their birthdays are). But it upset me that my Dad was very obviously trying to hide it from me. I really don't understand why he, or my family, has the impression that I would make a fuss about something like that, as I have never ever done so. And finally, the most upsetting thing, is that my oldest brother Mark, and his wife Gill, are getting separated. They've been together since I was at least 7 years old. That's over 25 years. I am in shock. I could not fathom what had happened. They've always seemed the happiest, most well formed couple I've ever known. My mind was reeling.

So, when I got to G's, I was rather pensive. I was still a little upset at him, not sure how I was going to be received, and had the conversation with my Dad on my mind. I don't think I could have been much fun to spend the evening with. G went out to try and buy some chocolate, but the shop he went to was closed, so he was out for over an hour searching for chocolate (bless him). While he was out I had a panic attack; I tried very hard to fight it, but ended up scratching and biting my left hand quite badly. When he returned I cried on him and spoke with him about my Dad upsetting me. I think we then watched a film. If we did, I couldn't tell you what it was. I'm fairly certain we were sat on the settee though. He tends to sit. I lie with my head on his lap. I find it very hard to sit comfortably in a normal seated position; something he's been very accepting of thankfully.

Yesterday was a lot better. I've been a bit off over the whole weekend, worried about Mark and Gill. I have probably tired him out with my ponderings on the matter. His internet connection is still not up and running, so we went up to the garden centre to use their free wifi. It doesn't work. So then we went into Market Drayton with the intention of seeking the library, but ... I think we forgot! We bought some food from Asda, went home and had a barbecue. I had to lie down for over an hour, as I was feeling particularly poor.

I wish I understood why it is that I perk up later in the evening. It seems to be a fairly common CFS trait; being nocturnal. If G and I do live together in the future, I am really not sure how he will cope with that throughout the week. At the moment he is fine with it at the weekends. So, late last night we were playing a board game (Outburst), after going up to Audlem for a quick walk through the village.

Today I spent mostly in bed. G went to work to use the Internet, then he went to the shops. I didn't get up til 3pm this afternoon. While he was out I prepared my bags to return home. I discovered in doing so that he had locked me in the house. Being confined to a space is a significant panic trigger for me, so I had to fight another panic attack again. I found the key to the back door, went out and lay on the slabs, but there is no gate or path out of the back yard so the feeling of confinement is still apparent. When he returned I asked him to not lock me in anywhere again; apparently I was not particularly polite in doing so. 

We went up to a nursery near where he lives and bought a couple of plants and a planter thingy. He's very keen in turning his back yard (all 8' x 10' of it) into my fairy garden. He's stuck one of the fairies on top of the wall. The fairy couple we have put in a tub that was already there and planted a few Lobelia around it. In the planter we bought today we planted the rest of the Lobelia and some .... erm .. I can't remember what it's called. He's swept the slabs so that it looks a lot cleaner and pleasant out there than it did. It's starting to take on the character that he'd like it to. I wonder if he'll still sit out there of an evening when he finally quits smoking.

I went upstairs to rest again before coming home. But he decided to come and join me for 'relations', not to put too fine a point on it. Over the last few days I've noticed that he's been struggling a little with himself in relation to asserting dominance. That is to say, I've noticed that he's missing S&M play. I can feel it boiling within him. I have not mentioned it to him myself, but he's mentioned it a few times. Once or twice he's said that he misses the sadist in him. But he has also said that he is not sure whether it is still there when he is with me, and that he doesn't wish to hurry that part of our relationship if it is there; we still have a lot to learn about each other, and that learning is very important for that level of trust. I can feel his frustration so much that it's tangible at times though; this evening being one of those times. He was a little rougher with me than usual, which is fine by me. I can't help wondering though, how do play partners get to know each other as well as he suggests they need to without knowing each other and learning each other the way that we are?

A good bit from the radio

There was a lot of fuss about M.E. on Friday. There was an awful interview on Radio4, which was then repeated on Radio 5 Live. It seems that 5 Live did another bit later on though.


And because I know that link probably won't be live forever, I have transposed the interview below. Interjections from the interview are marked with '>'.

I was 12 and a half when I was first diagnosed. Prior to that I was fit and healthy and happy and I believe psychologically stable; cycled to school, school rugby, academically doing reasonably well, and since then I suffer from severe headaches, severe muscle pain, severe exhaustion, brought on by physical activity or mental activity which is reading, using computers and so on. It is incredibly debilitating. I have to use an electric scooter and stair lift. I have a carer from social services to assist me with personal care. So life is incredibly difficult and I am in no doubt that it's a physical illness. I know some people have done things like CBT and so on, and have improved, but I think as Dr Shepherd pointed out earlier on, ME has become an umbrella term for a lot of illness and I think a lot of people with ME would argue that if you do CBT and get better completely perhaps you didn't have ME to start with.

> CBT being cognitive behaviour therapy.

That's it yes.

> What was the trigger for you?

It was a virus called, don't laugh, Coxsackie B4

> Wow

They recon that half the town of Aberystwyth had the virus. They tested a lot of children in my comprehensive school, a lot of them had it. And for reasons they're still not sure of, a large per centage of people in Aberystwyth came down with ME at that time.

> Do you think there is an imbalance of funding for research into this disease, condition, however you might describe it?

Er disease, yeah we'll go with that. Yeah, it would appear so. I think one of the things that is confusing, for example, at the moment in the US and the UK, people with ME are not allowed to give blood. Now, obviously, someone with a psychiatric condition would not pose any threat to the population  by giving blood. So if people with ME are not allowed to give blood, then obviously the medical authorities are very concerned that ME does have a  physical and therefore contagious element to it, so surely the bulk of the research should be going into finding out what the physical causes of ME are.

> Finally, we had a text earlier from someone saying 'ME, it's just an excuse for lazy people to take a couple of years off work'

Yeah, you do get people like that. I'm afraid ME is a serious and debilitating illness. I would love to live life to the full, I would love to be working, climbing mountains and doing all sorts. I get very very frustrated, and life is extremely painful and extremely difficult and I wish it was very different. But for a lot of people with ME that is the reality of life. Acceptance from the medical profession, which we get from a vast number of doctors, is valued, and the thing that we want is for people to help and funding to be given to try and find some way of assisting us practically.