Saturday 19 November 2011

GPs to no longer sign people off sick

This is a long article (click title to view), and I have a lot to say about it, so I'll just give you a few snippets below. I like my snippets recently don't I!
People should be signed off for long-term sickness by an independent assessment service and not GPs, a government-backed review says.


The review also calls for a new government backed job-brokering service, to find work for people cannot stay in their current job because of their condition.


If the recommendations are accepted people who are signed off sick would also be put on to Job Seekers' Allowance, instead of Employment Support Allowance, for a period of three months.


"What the GPs say is they don't have time to do an in-depth functional assessment and nor have they had any training in occupational health so we think it's providing a new unique service that both employers and GPs need."


And welfare reform minister Lord Freud said: "We just don't get adequate help for people early enough when they need it and what we are creating in there is an incubator for lifelong idleness for far too many people."


He (Dr Richard Vautrey) said: "If what is being described is a proper health, occupational health assessment at an earlier stage in the patient's illness then that would be helpful.


"But if it turns out to be a punitive process just to try and save money without the best interests of the patient at the heart of the process then it will fail."
So, just to summarise for you, in case it is not clear from the above; the latest government proposal is to stop peoples personal doctors being able to sign them off long term sick from work, and to put the responsibility on a new body, which as yet does not exist. This body would consist of occupational therapists, who no doubt will give you a twenty minute assessment which does not give them any true insight into your condition at all, just like the Atos assessments. It would not in fact surprise me if they employed Atos to do it.

Why on earth are they making a fuss about 300,000 people being off work sick? That's a drop in the ocean compared to the unemployment figures. Perhaps if they focused on creating jobs, bringing markets back to this country, and preventing JSA fraud the country would be in a lot less dire straits; and they could stop picking on the sick and disabled!!

Seriously, the population of the United Kingdom is approximately 60 million. 300,000 being ill long term is less than 0.5%. I would say that was almost a miracle in itself.

Where do they think all of these jobs for the sick and disabled are going to come from? If they cannot employ the nearly 1.5 million who are claiming JSA, how do they think they will find jobs for people whose health is unreliable.

I may have been ill for ten years, but I've seen how all of this works; if you're ill at work, you get penalised. You lose out on bonus's and those with poor sickness records are the first to be made redundant. Why would employers take on someone who is uncertain when they'll be in work, or how much they can do, someone completely unpredictable, when there is a healthy person equally qualified that they can employ?

The most ridiculous thing about this is that our GPs know us the best. It did not say as such in this article, but the news item on the television last night apparently said that many GPs feel pressured to sign patients off long term sick when they should not. This, I can understand to a certain extent, as when you are familiar with someone it is human nature to not wish to do them any harm. There in lies the error though; if your GP cares about you they would not sign you off as long term sick, taking you out of the work place, and earning better money, if it were not necessary.

I know for a fact that my own GP feels a lot more pressure from the government to have me returned to work, than he does from myself to sign me off sick.

Well, as one of my friends says, this may simply be an exercise in keeping the public happy again. Show the public that the government is doing what they want, then actually do nothing about it. I hope he is right, as these measures would lead to even further suicides.

Friday 18 November 2011

Diagnostic Blood Test for M.E.

I'm frequently disheartened by the lack of interest the scientific field has in M.E.. Sometimes though there is a glimmer of hope. There is progress. It is slow, and it is not well publicised, but it is happening. I was very excited at the Rituximab study a few weeks ago. Now there is this!

A bloody test that will potentially identify those who have M.E., and also possibly identify those who will respond to treatment with Ampligen.

"Four genes were identified by Multivariate Regression that separated CFS patients from the normal control group.


"Chronix and Hemispherx are currently planning to [...] identify how different persons with CFS can respond to Hemispherx’s experimental drug Ampligen®.


"Ampligen® is an experimental RNA nucleic acid being developed for globally important debilitating diseases and disorders of the immune system."

I've got M.E. I'm not a benefits cheat

It is with a little sadness that I share this article. It was written in August 2010, so well over a year ago now, and things have not changed at all. It's quite a long article, and it's well written, so I can't really nick bits of it to share with you. If you're interested in how people with M.E. (and similar illnesses) are treated, then I would indicate to you that you can click the title of this blog post to read an article that describes perfectly what myself, and various others, have been and are repeatedly going through.

It is a personal account, describing the process and the writer's personal experience. It is because the process is so badly flawed that many people with M.E. have to rely heavily on other conditions they suffer with in order to actually claim ESA. I'm now kind of wondering how I got through, since my assessor completely ignored my back problem all together.

Thursday 17 November 2011

National Union of Journalists Speaks Out

The National Union of Journalists today released a statement asking journalists to stop calling disabled people scroungers. You can click the title of my blog post to see the whole article, but there are also some snippets below.

I personally find it interesting that it states the rate of Incapacity Benefit fraud to be 0.3%, and the rate of Disability Living Allowance fraud is 0.5%. 0.3% being the lowest benefit fraud statistic. Given the demonisation I've personally felt from people I have met and people I know, it is evident that the press coverage of benefit fraud has indeed lead the public to believe otherwise.

"Over the last few months we have seen a continuous drip-feed of stories which have promoted a range of inaccurate and generalised accusations against disabled people with long term health conditions. As a result disabled people have faced greater hostility from the public, with many claiming that they have experienced hostility, discrimination and even physical attacks from strangers.

"The Work and Pensions Select Committee on Incapacity Benefit have themselves criticised the Government for the language it uses when it releases and comments on official statistics on the incapacity benefit reassessment programme resulting in some media using terms such as "scrounger" and "work shy". 
"Rather than offering constructive support to disabled people, certain stories and features have portrayed disabled people as unsustainable, unproductive and even not disabled at all, but profiting from fraudulent benefit claims"

I've not personally experienced violence, but hostility I have. In fact, one of the reasons I left a dating site earlier this year was the number of people who had a go at me when they discovered that I am incapacitated. The most hurtful incident was Easter Sunday (long time ago now). Having spent Easter very sadly alone I went to the Chinese take away to get something to eat. A new person working there asked me if I had just finished work. I said that I had not. He then asked me what I do. I explained that I do not work at present. I didn't even say I was ill or claiming benefits, but received a mouthful from him asking whether I just intend to live off benefits for the rest of my life. He then had to answer the phone, otherwise I'd have given him a mouthful back and asked for a refund. 

I agree with the NUJ. The media is deliberately stirring up hatred against the disabled and incapacitated. I cannot begin to imagine why. There is a lot of benefit fraud happening. People claim Job Seekers Allowance with no intention of actually working again. Everyone I know who claiming sickness or disability benefits, would much rather be healthy and working. 

One of my friends summed it up beautiful recently. He has Cystic Fibrosis. He is on high rate mobility, and therefore has help with costs towards a car. Someone expressed to him that they were envious. His response was that he would gladly exchange them the car for their healthy lungs.

Tuesday 15 November 2011

Please understand that you don't understand

'Oh, I know what that's like; my friend used to have it!'
Just one of many phrases that tends to upset me. Particularly if followed by something along the lines of 'He used to go to all the protests!'. Of course I don't actually say anything on the occasions that people say something like that to me. I know that people are trying to relate, and trying to be nice, but they don't realise that they are actually being rather tactless. So, I'm asking you to understand that you just don't understand.

I know that probably sounds very arrogant, but it is not.

Among people who have CFS / M.E., those experienced at least, it is generally understood that even among one another we do not all have the same experiences, we do not all share the same symptoms, we are not all on the same medications; we basically cannot understand each other. But we respect that. When one of us says we are struggling with such and such, we make allowances for it.

I spent this afternoon with Trudie and Bev. The three of us have M.E.. We are all aware that we inevitably struggle with energy levels, and that spending time together will take a toll on our condition. We are aware that Trudie is the worst affected, and Bev the least. But the way in which we are affected varies significantly. When Bev is exhausted she spends hours asleep. When I'm exhausted my entire body starts to ache and tremble. We simply mutually accept that we have different problems, and that we'll express if we are struggling with anything or need help.

So, if you know someone who has M.E., or has had M.E., please understand that that does not automatically mean that you understand me. To be honest, it's highly unlikely that you understood your friend to start with either. Even among one another we struggle immensely to describe the symptoms we go through, and because it changes from hour to hour, day to day, what we described to you yesterday may well not stand today anyway. So I'm asking of you, please, instead of trying to relate to me, or someone you know who has M.E., just take us as you find us. You can't presume, and to some extent you can't prepare.

Please don't misunderstand me. It is not that we seek to be aloof and mysterious; we really honestly do want to be understood. It is horrible having to try and explain what we are going through over and over again, especially when we don't really understand it ourselves. A little patience please.

Friday 11 November 2011

Respite

Most of the time when I post to my blog I seem to be complaining, either about how bad my health is, or about the benefits system in the UK. I'd like to make a change. I would like to thank Bev and Mark for being wonderful.

Recently I've been feeling extremely down. I've been dealing with a house move I did not want to make, an ex husband messing me around, and health that I just can't get a handle on. I've had some very dangerous thought patterns.

Today .. well, it is 9pm, and I've not been out of bed properly today. My legs hurt. Until about an hour ago I was finding it hard to focus on anything efficiently. And I'm suffering from the M.E. equivalent of labyrinthitis again. But I've spent most of the (waking) day giggling and laughing.

Bev and Mark, and Roger when he passes the room, are a tonic. Mark in particular helps me see the funny side in everything M.E. related. Not just M.E. related, but it's notable for me as I fail to find any of it amusing when I'm alone at home.

Today I've been fed yummy food, given a birthday cake even though my birthday was a month ago, and made to feel relaxed and happy in general.

Thank you Bev & Mark.

M.E. is serious

So many people simply do not comprehend that M.E. is a serious illness. At this time of last year I was severely ill. I was bedbound, my body deteriorating in front of my eyes. I thought I was dying. I have said this to people over the last year, and been met with a mixture of reactions. Many people do not believe it possible to die from M.E.. Mostly people who die from M.E. die from secondary infections, or complications caused because of M.E., (or suicide),  but not actually the M.E. itself ... in cases like mine though, there was nothing else you could put it down to ... and nothing else with which my doctor can explain the consequences I've been struggling with all year. I only personally know of one person who has died from M.E., but that is one too many.

So, for those who don't believe, please visit the following website: ME / CFS Memorial. A snippet:

"Barbara Ramos Gibson, 63, died on May 1, 2006 from complications of CFIDS/ME and fibromyalgia. She was active in Florida trying to make a difference in the way the disease was viewed as well as reaching out to others. She had become so severe that she was unable to walk and she was due to enter a nursing home when her life ended."

Monday 7 November 2011

Help Brian :(

I simply cannot believe this; it's as if it was the 18th century all over again or something. What is the last thing someone with M.E. needs? To be locked in a psychiatric ward and told that their illness is all in their head. Especially given the recently apology from Norway's government to their M.E. patients. This is apparently what has happened. The link to the forum is in the title above. The story .. below ...

Hi Guys,

PERMISSION TO REPOST

UK ME / POTS patient Brian Nicholson has been sectioned under the mental health act due doctors claiming that his ME / POTS symptoms are a delusion.


I have written to his MP, his solicitor and a consultant in London who diagnosed him with dysautonomia / severe POTS. His MP is a member of the APPG on ME in parliament so hopefully he'll be helpful. The Countess of Mar in the Lords is also aware of his circumstances.

His solicitor has been asked to take the Canadian and International ME  guidelines to the consultant in charge of his care and to ensure that he is up to speed with ME himself.

Devon doctors, UK, have sectioned Brian Nicholson on the grounds that his symptoms of severe ME/POTS are a delusion. Please could folk kindly send him cards and messages of encouragement. If you could visit, that would be great. The address is below.


Thanks, folks,

C.G.


Please can you guys help out by sending Brian cards, notes and letters to cheer him up like we did with Zoe a few years ago? He's down, scared and lonely and could do with knowing there are folks out here that care. It would help him a lot.

Brian is in:
Haytor Ward
Torbay Hospital
Lawes Bridge
Torquay
TQ2 7AA
01803 654917

If anyone is close by and would like to visit him please let me know and I can
put you in touch.

Recording Atos Assessments

Don't have the spoons to comment much. This was posted yesterday, in one of the groups I belong to. Useful information for anyone who is approaching an Atos assessment.

"Well guys, I went through my ATOS WCA today. Was in there AN HOUR. Something you should know though - THEY recorded it for me. They've been piloting a recording system in certain areas of the UK.


They screwed me around quite a bit, mainly being unable to tell me their exact recording requirements, messing up appointment days and then having the DWP come down on me to justify it all! Involvement from MP had them get back to me and offer me a date & time at my convenience with an English speaking, British qualified GP they got in from another area especially.


If I can do that, I'm damn sure you can too. ASK if there is a recording pilot in your area or a nearby area and PUSH for it. Involve your MP if you get nowhere - they WILL and DO stonewall you when you try to enquire - either that or the staff at both ATOS & the DWP have no idea what their own rules are. Point is, try & you might just get somewhere. I know it takes a lot of stress & energy but that recording could be your proof at appeal.


They also took the recording equipment from another city especially! When I arrived the reception knew "Oh, you're the one that wants it recorded". Seemed like a bit of a fuss.


Anyway, I just have to stop fretting whilst I await that dreaded brown envelope.


NB: I did note that there were signs dotted about mentioning the "duty of care" they had to staff & clients but remember that the audio from an ATOS recruitment day says that the job is NOT a caring role. So which is it? Just food for thought....."

Friday 4 November 2011

Inaccessible assessment centres

Someone posted the following on one of the M.E. groups on Facebook earlier. It illustrates beautifully what we are up against:

"I have just posted this as my status. Please feel free to nick it if you wish

This is a true story, please repost this to show what the levels of treatment the UK is currently doling out on the most vulnerable people in our society. It is not an isolated or unusual example either.


A guy is chatting to a gentleman at a bus stop. He is in a wheelchair. He explains that he has just had to bus from Weston-Super-Mare to Bristol for an assessment of his fitness to work. The reason he has had to bus this far, is that the medical assessment centre in Weston-Super-Mare IS NOT WHEELCHAIR ACCESSIBLE. During the medical, the assessor tells the gentleman that he is going to hit his knee with a hammer to test his reflexes. The gentleman insists that this is not going to happen. The assessor (who is allegedly medically qualified) challenges him as to why he will not allow this. The gentleman replies that it is because HE HAS BONE CANCER.


So, bearing in mind this gentleman's condition, and the fact that he would have filled in a long and tedious form outlining the state of his health, the question is WHY ON EARTH WOULD THEY PUT SOMEONE SO SICK THROUGH THIS PROCESS?

And ARE WE GOING TO STAND BY AND LET THIS CONTINUE?"


I know many people will read this and dismiss it, assuming that the system cannot really be that stupid, but honestly, it really is. 

The experience I had a few years ago is not dissimilar. I was called for a medical assessment. I was not actually claiming benefits at the time, but was told to go for it anyway. The assessment centre is over an hour away from here by car. I can never be certain that I would be able to drive that long to get there, then endure the assessment (let alone the waiting room before hand), and drive home again. They sent me a route plan for public transport. The route plan took over three hours, with several bus changes; some of them did not even meet up, buses leaving before the bus I would have been on was supposed to have arrived at the link destination. There is no way that I would be able to undertake such a journey, even on a good day. They refused to perform a home assessment for me, so Ian felt forced to take the day off work and take me to the assessment. The assessment centre does not have a car park. So, people attending the centre must find parking. We had to park approximately ten minutes walk away from the centre. The assessment suite is on the third floor. There is a lift, but you are told when you enter the building that it frequently breaks down and asked if you will be able to use the stairs if this happens. That is obviously part of the assessment. On that occasion I was assessed by a doctor. He was really nice, and sympathetic to my condition. Sadly, a couple of weeks later I was phoned by the assessment centre saying that there were problems with my assessment and that they could not locate the doctor who had assessed me to enquire about them; that I must attend another assessment. Ian refused to take another day off work in order to take me. I therefore received a letter stating that I had lost the benefits I was receiving. I was not receiving any anyway. The entire episode was most perplexing. 

I believe that the Croydon assessment centre has recently been criticised by their local MP for the fact that it is inaccessible. The centre's argument was that if people could get into the building they were fit to work, and if they were able to communicate with people inside the building that they could not enter, they were also fit for work. 

This is the level of victimisation that we're up against. From the government, and agencies that are supposed to be helping us. I despair.

Wednesday 2 November 2011

I'm gonna miss my doctor!

So, I went to see my doctor yesterday. It's the first time he's seen me so ill, as usually I cancel appointments rather than force myself out of the house. It's the first time he's actually seen me use the stick too. Usually I'm too embarrassed, but given how ill I am right now I figured I should be completely utterly honest with him. I didn't actually need to say anything; as soon as I walked into his office he knew. I'm not my usual bouncy, positive self at the moment. He knew the right words to express my wanting to end everything too. It alarmed me a little when he said that we have to hit rock bottom before we can go back up though; last time he said that I wasn't as bad as I am now ... so technically, things can get worse.

We talked about my visit to the rheumatologist. He isn't very happy with her recommendations. We're going to try the Amitriptyline, but only for a few days to start with. If it affects me like it did last time, we'll be stopping. He's prescribed the Tramadol as recommended too, but there was another drug she suggested which he has decided we should give a miss. He's not overly keen on the Tramadol either. I've not looked into it, but suspect this may be something to do with my wanting to fall asleep and never wake up again.

He was unhappy that she did not wish to discuss M.E. at all, but understood why she instructed me to not mention it to the physiotherapists when I'm finally referred. He has decided that despite the waiting lists, and the distance, he is going to refer me to the Nuneaton CFS Specialist unit. When I get my appointment I'll just have to beg someone to take me. He's going to see if I can go in privately to shorten my waiting time. And he's going to stay late on Friday to see me, because he wants to be sure I'm ok with the new medications. I'm allowed to stay with the practice for two further weeks after I've moved house. I will miss him.

I hate this. I hate that I am so ill that I have to question myself before being honest with anyone about how bad things are. It is second nature to play things up. When someone asks you how you are they expect you to say 'fine thank you'. If you respond with anything else you tend to receive a strange reaction. Well, I'm not ok. I desperately need help, and have no idea how to get it. So I had to be honest with him.

I made him a bird out of my snotty tissues. I think he was grateful.