Archive for January, 2013

Groundhog Doctors Appointments

I am so very, very sick of having this conversation with doctors;

Doctor: “We can’t do anything more for your condition without surgery. Surgery is not an option because it is far too risky. Now it’s just a case of finding ways to manage your condition, like pacing. Let’s talk about what would help.”

I get some aids/medication to help and I go away and practice pacing. I come back 6 months to a year later.

Me: “Now that I’m not focused on trying to find a cure I’ve come a long way in managing my condition. I’ve used [x] aid to help with pacing & [y&z] medication have really helped. I’m feeling a lot better and doing a lot more.”

Doctor: “We don’t want you to become reliant on your aids or medication! What would happen if you suddenly got better?”

Me: “…but you said that I wouldn’t and that we needed to focus on management now.”

Doctor: “Don’t be defeatist. That’s a very negative attitude to take. How is your mental health? How about I send you to see Dr/Nurse So-and-so to talk about other interventions.”

I go to see the new Dr/Nurse and then come back to visit my Doctor to get the results.

Doctor: “We can’t do anything more for your condition without surgery. Surgery is not an option because it is far too risky. Now it’s just a case of finding ways to manage your condition, like pacing. Let’s talk about what would help.”

IT’S NEVER ENDING.

Even when I point out how frustrating having the same conversation is it does nothing. Bah.

Twitter & #HeardWhilstDisabled

It’s a Monday and like millions across the world I woke up feeling pretty naff. Anyhow, on top of that fate consipred to get me thinking about some of the hurtful/rude/insensitive people had said to me with regards to my disablity.

As any self respecting person in a rubbish mood on a Monday would, I decided that it was time to vent.

I then went on to post some of the stuff that was on my mind:

Before long a few others joined in and in half an hour it had started to spread. I went out to an appointment and by lunch time tweets were flying from lots of other disabled people who were also using the hashtag to vent and/or spread awareness that this stuff really happens to many of us all the time. I understand that many felt excluded by the use of the word “heard” in the hashtag & I can only apologise. My intent was to vent a few personal annecdotes originally, there was no planning involved, had there been I would have chosen a more inclusive tag like #experiencedwhiledisabled for example. I hope you can understand that the slight was not intentional. I’d like to share a few of the stories people shared now;

There are so very many more too, all warrant reading. I’ve just got in to discover that whilst I was out this happened;

I’m so happy that people had the chance to vent and share their stories with so many others. I’m also still pretty shocked that a Monday morning moan could turn into something so big.

We found our way into a few news stories too! One at the Guardian & one at the Independent

Updated PIP Assessment Guide

The government have provided another update to the PIP Assessment Guide. It’s still not the final version, but it’s the best we have to work with so far.

Before I go any further, this guide isn’t legislation. It’s not the law but it is the guidance ATOS/Captia (depending on where you live), the DWP and Tribunal Judges should be working from when making decisions.
The two area’s of particular concern many of us campaigners raised in response to Decembers release of PIP criteria were; the loss of reliably, repeatedly  safely and in a timely manner from the legislation and the reduction of the distance people need to be able to physically mobilise to automatically get the enhanced level of PIP from 50m to a puny 20m. Naturally I would like to see the former put into legislation for added protection and the latter decision reversed. As that hasn’t happened (yet) I think it’s important to look at how the guidelines will/won’t protect us if we are unfortunate and do not manage to get those changes made.
These two areas are covered in section 3.3.Reliability.
The document says;

“3.2.7. For a descriptor to be able to apply to a claimant, the claimant must be able to reliably complete the activity as described in the descriptor. More information on this can be found in section 3.3.”

Then goes on to say;

“3.3.1.Central to the application of all the activities within the PIP assessment is a consideration of the manner in which they are undertaken. If an individual cannot reliably complete an activity in the way described then they should be considered unable to complete it.
3.3.2. Considering reliability involves looking at whether the claimant can complete the activity as described:
• Safely – being able to complete the activity in a fashion that is unlikely to cause harm to themselves or to another person.
• To an acceptable standard, given the nature of the activity.
• Repeatedly – being able to repeat the activity as often as is reasonably required.
• In a timely manner – being able to complete the activity in a reasonable time period.”

Which is fairly reassuring, it means that the assessors shouldn’t apply a descriptor unless it meets the reliably, repeatedly, safely & in a timely manner conditions. You can read up on example of those in the guide (Section 3.3, page 72). Of course those with fluctuating conditions have been pretty confused about how these four descriptors should be them. That is covered by the guidance too, it says;

“3.2.9. A scoring descriptor can apply to claimants in an activity where their impairment(s) affects their ability to complete an activity, at some stage of the day, on more than 50 per cent of days in the 12 month period. The following rules apply:
• If one descriptor in an activity is likely to apply on more than 50 per cent of the days in the 12 month period – i.e. the activity can be completed in the way described on more than 50 per cent of days – then that descriptor should be chosen.
• If two or more descriptors in an activity is likely to apply on more than 50 per cent of the days in the period, then the descriptor chosen should be the one which is the highest scoring.
• Where one single descriptor in an activity is likely to not be satisfied on more than 50 per cent of days, but a number of different scoring descriptors in that activity cumulatively are likely to be satisfied on more than 50 per cent of days, the descriptor likely to be satisfied for the highest proportion of the time should be selected. For example, if descriptor ‘B’ is likely to be satisfied on 40 per cent of days and descriptor ‘C’ on 30 per cent of days, descriptor ‘B’ should be chosen. Where two or more descriptors are satisfied for the same proportion of days, the descriptor which is the highest scoring should be chosen. ”  

Taking this as it stands it means that theoretically the DWP, Atos & Captia should have a hard time excluding people who should be covered by this umbrella. Of course they’d have a harder time if those words were in the actual legislation.

It’s not a win, but I feel it’s quite positive. The guidance isn’t overly vague which will make it harder for them to find loop holes. I do think it’s quite harsh in some areas, take this example;

“Mr X is able to stand and move unaided. He can comfortably walk up to 150 metres at a normal pace. After 150 metres he starts to become breathless and to experience some mild pain. He can continue to walk but his pace slows. The pain and breathlessness gradually increases and after 250 metres he needs to stop and rest for about 5 minutes before starting to walk again. Mr X can repeatedly walk 250 metres, with short 5-minute rests in between for around an hour. After an hour of this, he needs a longer rest of about an hour before walking again. It takes Mr X around four minutes to walk 200 metres.”

It then explains that Mr X would be judged as being able to mobilise safley, reliably, repeatedly and in a timely manner. I think that underestimates how short that kind of distance is and how hard it can be to find somewhere to rest. It also doesn’t look at the psychological implications of having to walk until you are in agony then stop, rest and do it all again. Though I suppose that would be covered by activity 11, planning & following journeys.

“The second area of concern is activity 12, moving around. The guidance has the following notes added to it; 

This activity should be judged in relation to a type of surface normally expected out of doors such as pavements on the flat and includes the consideration of kerbs. 

20 metres is considered to be the distance that a claimant is required to be able to repeatedly walk in order to achieve a basic level of independence in the home.
50 metres is considered to be the distance that a claimant is required to be able to repeatedly walk in order to achieve a basic level of independence outdoors.
50 to 200 metres is considered to be the distance that a claimant is required to be able to repeatedly walk in order to achieve a higher level of independence outdoors. 

Standing means to stand upright with at least one biological foot on the ground with or without suitable aids and appliances (note – a prosthesis is considered an appliance so a claimant with a unilateral prosthetic leg may be able to stand whereas a bilateral lower limb amputee would be unable to stand under this definition). 

“Stand and then move” requires an individual to stand and then move independently while remaining standing. It does not include a claimant who stands and then transfers into a wheelchair or similar device. Individuals who require a wheelchair or similar device to move a distance should not be considered able to stand and move that distance.  

Aids or appliances that a person uses to support their physical mobility may include walking sticks, crutches and prostheses.

When assessing whether the activity can be carried out reliably, consideration should be given to the manner in which they do so. This includes but is not limited to, their gait, their speed, the risk of falls and symptoms or side effects that could affect their ability to complete the activity, such as pain, breathlessness and fatigue.  

However, for this activity this only refers to the physical act of moving. For example, danger awareness is considered as part of activity 11.”

The descriptors have been altered as well, they now read;

A. Can stand and then move more than 200 metres, either aided or unaided. 0pts
B. Can stand and then move more than 50 metres but no more than 200 metres, either aided or unaided. 4pts
C. Can stand and then move unaided more than 20 metres but no more than 50 metres. 8pts
D. Can stand and then move using an aid or appliance more than 20 metres but no more than 50 metres. 10pts
For example, this would include people who can stand and move more than 20 metres but no further than 50 metres, but need to use an aid or appliance such as a stick or crutch to do so. [Not including wheelchairs]E. Can stand and then move more than 1 metre but no more than 20 metres, either aided or unaided. 12pts
F. Cannot, either aided or unaided, i. stand; or ii. move more than 1 metre. 12pts

This is a slight improvement, in that we now know that wheelchair users who need a chair to mobilise 20m or more are protected. Still, it’s far less than ideal. It would be far better if the distance was raised from 20m to 50m.

There has been a huge tide of negative news around the PIP changes recently, which whilst fully deserved, is also very upsetting when it’s all you hear & read day in and day out. I think we should take what positives we can from this. That’s not to say that we shouldn’t keep campaigning to get the changes made that we want to see, but that we should all take a few seconds to pat ourselves on the back before plugging onwards. These changes would not have been made without the tireless campaigning and awareness raising work hundreds of disabled people across the country.

If you want to keep fighting these changes you can have a look at the We Are Spartacus campaign group website for ideas and to keep up-to-date with developments.

A Response To Philip Hensher’s Article

Dear Philip,

I read your article (Some people on disability benefits are fit to work) yesterday and I saw the backlash on twitter. I have some thoughts on it and I wanted to share them, as a disabled woman with both physical and mental health problems who has been through the wringer with the DWP and it’s WCA process plenty of times.
I read every word and upon finishing was struck by two things. Firstly, that whilst apparently arguing for  some form continuing assessments of sick & disabled benefit claimants you were against the Work Capability Assessment in it’s current form. That is something I applaud. I too am against the current WCA’s. I’m very glad to hear you speaking out against them and I would love more voices to join the throng. 
The second is that whilst suggesting that there is some need for assessment you (I assume accidentally) propped up some rather pernicious myths about people claiming disability benefits. I hope you can understand that for many of the people that will have been attracted to read your article that might have made pretty painful reading. I will just go through some of those myths now as I assume you might not be well versed with them.
That there is a high percentage of people claiming these benefits that shouldn’t be.
You devote about 50% of your article to talking about people who defraud the system. I would argue that this is providing false balance to these stories. The DWP’s own statistics show that less than 1% of claims are fraudulent. You are not the first person to cover the issue in this manner (either to make it seem more contentious or exciting, or simply because you believed it to be true because of the media coverage you have ingested) and nor will you be that last. The problem is that many of us are suffering, I personally believe, in a huge part to the false balance given to these stories.
As a wheelchair user I have noticed the abuse I receive in the street has changed over the last few years. It’s no longer about how I look (funny, disgusting) or about how I might be “catching”. Instead it is about how I am probably a lazy, workshy, scrounger and a benefit fraud. People feel free to approach me in car parks and ask if I really need the blue badge parking space or if I just use the chair to get a free car. It’s painful and it’s part of my day-to-day existence. It’s part of many other peoples too. There has been a huge rise in disability hate crime over the last few years. I assume from what you have written it is not part of your everyday life, but I don’t know. When people for whom this is their day-to-day reality read articles like yours they often have an (understandable) emotional response which can vary from sadness to anger. I became pretty despondent personally as what I thought was a very promising piece propped up the “scrounger rhetoric” as many of us call it. I hope you can see that when people in the media spend as much, if not more time talking about scroungers the effects on the vast majority of disabled people 
That mental health conditions are not as debilitating as physical health ones.
The way (or tone) you take when talking about people who claim benefits for mental health conditions such as anxiety and depression seems pretty sceptical to say the least. This reader at least felt like you were either ignorant of the how severe these conditions need to be to claim ESA or you were suggesting they weren’t really very debilitating. As I hope you are aware many people who live with mental health conditions are routinely told to “snap out of it” or are treated as if it is something they could just “get over it” with the right motivation and the way they were talked about in your article felt like you too were propping up this myth. I know that many people who responded angrily to reading your article were most hurt by this sentiment.
But, I can’t talk about other people. that’s not my place and those aren’t my stories. I can however talk to you about myself. I have a mental health condition, Post Traumatic Stress Disorder in fact. I also have a chronic pain condition stemming from a lot of damage to my abdomen and the nerves within. I have quite a bit of personal experience of dealing with both kinds of health issues. Thanks to the PTSD I can’t manage 15 mins in a whole host of seemingly innocuous environments (for example; being near petrol or the sound of breaking glass) because they trigger flashbacks during which I relive experiences that were so horrific the first time around they left me with a mental health disorder. I would often describe this, to those I would really rather not have a huge conversation about this stuff with as panic. In my experience panic can be as debilitating, if not more so than severe physical pain at times. Panic, fear, terror, fight or flight responses, what ever you want to call it is extremely unpleasant and can govern a persons life. We need to remember that when we talk of claiming ESA for anxiety or panic disorders we are not talking about people who experience panic on a once a month basis, if we were then they would not be getting ESA. We are talking about people who often experience it multiple times daily to the point it may stop them talking to strangers, leaving the house or wearing certain colours. It will also often have physical manifestations such as uncontrolled shaking, nausea, pain & high blood pressure. Someone who can cycle for over 15mins but can’t talk to people without crying and shaking in fear isn’t very likely to be employed. All because it is a mental health disorder does not mean it’s any less likely to be disabling than a physical health problem. 
That some conditions are more worthy than others
You mention obesity in your article and say that “The only possible purpose for public expenditure there is to help them back into fitness for work.” I feel the same way reading this I did when the Daily Mail published it’s bogus article about the parents of lots of children with ADHD being given free BMWs. There is a gulf of misunderstanding when it comes to these statistics which list which disorders people have and what they are claiming. Many people claiming ESA or DLA have more than one condition but the DWP only bothers to record the first condition listed on it’s forms. So, for example someone with ADHD, Obesity & EDS will only be recorded as claiming one of those conditions, possibly ADHD or obesity. It’s hardly ever as simple as black and white as it looks.
I also was disappointed that you used your platform to in many ways make it seem as if obesity (to a disabling enough level one would be able to claim ESA) is a lifestyle choice/moral failing and that people shouldn’t be supported. I hope you realise that obesity is often a side effect of many medications (steroids, beta blockers, anti-seizure medications etc…) as well as medical conditions  either directly (such as PCOS, Cushings & Prader-Willi syndromes) or indirectly by limiting activity or changing diet (such as arthritis & drepression). Even forgetting all of this I personally believe that if someone can’t mobilise, breathe, manage continence of anything else similar then regardless of the reason behind it those people deserve support. If we start deciding what conditions are worthy of being disabling rather than looking at the effects of conditions upon individuals we risk leaving a lot of vulnerable people behind.
I believe that you could have written the same article, which I believe can be summed up as “The WCAs as they stand need to stop but that we should talk about what will replace them that will be fair to everyone”, without using the afore mentioned problematic dialogue.
I’m going to leave it there, because I’m tired of writing and I’m sure you are growing tired of reading criticism. I do really respect you for having tried to take a stand against the WCA’s and I’d love to see you continue to write about these issues in the future but I’d also like it if you could try and consider how you talk about sickness, mental health problems & disability when you do so.  
Warm Regards

[Edited to correct typo]

Imaginary Wheelchairs & Other ESA Changes

As you may or may not know on the 28th January they are making some more changes to ESA assessments. Both of the proposed changes are dangerous and counter productive (unless you want to produce a super-flawed, biased and unfair system). They go a little something like this;

Imaginary Aids, Adaptations & Treatments

In a nutshell, they will be changing the system so that if a person could do something with appropriate aids/adaptations or has a condition that sometimes benefits from a specific treatment (even if they don’t have access to them) they can be judged as if they do. They also do not have to ask your opinion about it.

An example would be; a person who attends a meeting and explains that because of a condition, let’s choose chronic pain, they cannot walk 50m. The assessor decides that they think that with a wheelchair they could do it. The assessor then says nothing to the claimant and notes it on the assessment form. The person is then found fit for work or placed in the WRAG rather than the support group on the basis of an imaginary wheelchair. Of course, they don’t then give the person access to a wheelchair. They just seem to expect them to magic one out of thin air. Bitter experience has taught me that the NHS doesn’t give wheelchairs to a lot of people who would benefit from them. It’s also taught me that getting a NHS wheelchair doesn’t mean you can use it. If your home is at the bottom of a hill, has steps in and out, doesn’t have wide enough halls or door ways or any other number of issues are at play the chair is just a (often) ugly reminder that you can’t get out. Getting your home adapted for a wheelchair is very difficult at the best of times, heaven forbid you privately rent and your landlord doesn’t want you to ramp the front garden. All this doesn’t take into account our imaginary claimants ability to propel a wheelchair either. It would be laughable if it wasn’t a real threat.

The same goes for treatments. Did you turn down CBT for Fibromyalgia? If they think it would have made it better then they can “imagine” how you may have been if you’d had it and assess you accordingly.

Ignoring the Intersections Between Physical & Mental Health

The ESA50 (the pink form claimants get sent asking them to detail their conditions) is split into two sections; Part 1 (‘Physical Disabilities’) and Part 2 (‘Mental, cognitive and intellectual function assessment’). At the moment people who experience problems such as poor bladder control because of a mental or cognitive disability will explain that in part 1. Now they are proposing to make it so that only the effects of “a specific bodily disease or disablement” will be considered in part 1, whilst Part 2 will only consider the effects of “a specific mental illness or disablement”.

This is a massive issue as many conditions have both mental/cognitive and physical components. It’s also problematic because many physical health problems exacerbate mental health conditions and vice-a-versa. 

How to help


Sue Marsh over at Diary of a Benefit Scrounger has issued a rallying cry and offers some great advice about what you can do to help fight these changes (link to her post). 

You can email your MP by going to this webpage and searching for them by your constituency and send them a link to this report. If you don’t want to email them then you can tweet them with a link to the report saying something like “Dear [MP name] please read this report about damaging changes to ESA http://www.ekklesia.co.uk/ESAbriefing  #esaSOS”.

You can try to spread the word by tweeting, emailing & facebooking others (friends, family, reporters, councillors , and asking them to spread the report too.

The Perils Of Being Emotionally Unstable

It’s 2013, January is steadily disappearing and I haven’t written a new blog post in a little while. I’ve been struggling quite a bit with mental health issues lately and it’s made writing on my blog quite difficult, but I think it’s time to give it ago.

Trigger warning for after the cut; talk of domestic abuse, stalking, harassment, courts and mental health

Taking my abusive ex-partner to court was a really difficult thing to do. He was being charged with harassment because of the following;

  • Kept standing outside of my place of employment and watching whilst I worked in a manner that was very intimidating given our past.
  • Occasionally he’d come in and flip out of control, shouting and making threats – eventually I lost my job because he kept doing that and scaring away customers.
  • After I passed one of his friends on the street or saw them in a bar he’d be there in no time calling me names and making threats.
  • He made a fair few threats to kill me and I believe he would have on a couple of occasions if police sirens (called by witnesses) hadn’t scared him off.
  • He kept sending letters telling me about things he knew I’d brought for my (ground floor) flat which he could have only known about by looking through the windows.

The police were very supportive and arranged for me to give my evidence via a video link because the idea of ever seeing his face again was making me break down completely, I’d been living in fear of it for so long. The court date was pushed back by the defence at the last minute and I spent another 3 months telling myself it would all be better after the hearing.

At the hearing I gave my testimony and spent much of the time in tears as I had to relive what had happened. It was hard as the magistrates frequently had to tell him to “be quiet”, “stop banging the wall” and to “sit down” which really intimidated me at the time. It was all going as well as these things can until I was asked by the prosecutor why I was so scared of him and I tried to explain it was because of the abuse I’d lived through. The magistrates stopped me and told me they couldn’t hear about any events that happened before a certain date (which included our entire relationship, criminal damage to my property, sending the police to my home for no reason simply to scare me and more death threats). How do you explain why you are completely terrified of someone who breached pretty much every basic human right you had until you no longer believed you were a proper human being any more, when you can’t say anything about the way they treated you? I couldn’t find a way. When I left everyone was very nice and explained that because of his behaviour in the dock, the two outright lies he’d told that had been contrary to other statements he’d made, the testimony of the witnesses and the fact they couldn’t find one witness for the defence he was finally going to get what he deserved.

After the hearing  I got a phone call to tell me that he had been found ‘Not Guilty’ and given a serious warning that if he did anything else it would come straight back to court and he’d be charged. The reasons the magistrate gave for this verdict was because I had been “overly emotional” given what he had done (that they had been able to hear about) whilst giving my evidence which threw my testimony into doubt. I was the reason he got off. My emotions were the reason he was able to tell everyone he was innocent of *everything*. I was branded another lying woman by everyone that knew about it and my world fell apart. Things got so bad I had to move to a new city. All because of my emotions.

So when I saw my psychiatrist and she told me that as well as depression, anxiety and PTSD they were adding a diagnosis of emotionally unstable personality disorder I crumbled. Of course, that apparently just made me look more emotionally unstable because “the diagnosis shouldn’t have made [me] cry, most people find it very empowering”. It brought back all the feelings of pain when the abuse I suffered was dismissed because of my emotions. It made me feel like they were saying I was a broken person and therefore brought it upon myself/was over exaggerating things. I became scared that by my activism, blogging and tweeting was me unhealthily engaging in confrontations so I cut it right down.

It gave me time to think and to talk to those close to me about it. I have come to realise the diagnosis is clearly incorrect. I really don’t fit the diagnostic criteria at all. So, I am trying to challenge the diagnosis. It’s been taking up a lot of time and energy and it’s really thrown me back into a similar head space to that which I was in after the court case. In an effort to get past this blip I thought I’d write it down and draw a line under  it all. 

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