There is a case going to the supreme court this week about whether wheelchair users should have absolute priority over other passengers on buses.
http://www.theguardian.com/commentisfree/2015/jul/09/wheelchair-pram-bus-space
I have to be clear, I hate travelling on the bus with my pram, I prefer the tram. On the rare (now impossible) days that I used to take my daughter out alone on the bus there were plenty of times I had to wait for the 3rd or sometimes 4th bus to get on. This was usually for something important like a doctors appointment for her (I rarely travelled on the bus on my own with her unless essential). I left plenty of time and made sure to accomodate the wait time into my trip.
Anyway, that aside that is not the main problem I have with this case. It places "disabled people" at odds with "parents and children". I am both a disabled person and a parent. The fact that the bus can get my pram on actually enables me to travel, just in the same way as a wheelchair user experiences. I do not, when I am on my own with my daughter have the capacity to fold down the pushchair. It is not a simple case of inconvience for me, it is a case of being impossible when I am on my own.
There are other areas where there is an unfortunate clash of needs, namely in the toilet areas, where disabled peoples needs are usually met in the same space as parent and childrens needs are. There is no particular priority given to either group, it is simply a shared space and we take it in turns to use its shared facilities. its not ideal, but it works. I personally think its the same with all areas. We share our spaces with others in all aspects of life. Why is it so hard to share the bus space with others who may need it equally?
Yes, a wheelchair user can only use one space on the bus, so can the disabled mother with the pram. I am concerned that in the future I could get on a bus at one end of town and be asked to leave by the other end of town, forcing me to have to go back to the first stop, because it is the only stop I can get on to ensure I can get on with the pram, just because a wheelchair user gets on after me. I too may have had to wait 3 or 4 buses to get on too. I also have places to go of importance. It isn't easy for any of us with wheels, we should work together.
I want to leave you with a story from last week. Our daughter was ill, and needed to be taken to the out of hours doctors which involves two buses and about a 45 minute journey. It was 10 o clock at night when we set off. We have no car, and therefore no car seat. A taxi wasn't an option for us as its against the law (and common sense) to travel without one. We managed to get on all the buses we needed with our sleeping and ill daughter in the pram. If we had been forced to get off the bus for a wheelchair user we would have been literally stranded in an unfamilar area late at night with no way to get home or to our next destination, with the buses being every half an hour, it would have also meant we had lost the doctors appointment, starting the process all over again.
Not only that we were so lucky to get the last bus from the doctors into town with 2 minutes to spare. Again, with a sleepy and ill child in the pram. If a wheelchair user had got on, would it be right that we would have been forced off into the night, because they have "more priority".
Im not suggesting that it would be right to leave the disabled person there either, and thankfully where we live there is space for both. What I am saying is that sometimes it might involve some negotiation of the limited space available. we could move the pram around, etc.
There are no easy answers to this
Wednesday, 15 June 2016
Saturday, 11 June 2016
The decision letter from the DWP
I am moving between laughter and anger at the moment at the letter from the DWP about my mandatory reconsideration.
They haven't read it. I repeat, they haven't even read my mandatory reconsideration statement. The one I spent days writing with a lot of help, that contained an evidence based log of how i was entitled to all the different points. They didn't even bother with it.
Ten weeks of waiting and they couldn't even be bothered to read it. I know this because the reasoning they used to come to the same decision is using the same flawed arguements in the first place that I countered with the mandatory reconsideration. The main one being that I was well dressed at the ATOS appointment, despite the fact I wrote that yes, of course, that is because my husband prompts me to dress in the morning. He was doing his job. They still stated this in the new decision letter.
They accept that knifes are triggering for me and that its not safe for me to use them, but as this isn't for "the majority of time" they think its ok. I'm not a professional knife thrower, so I don't tend to use knives for the majority of the day, only once or twice.
they seem very insistant that as I don't take any anti aniety medication I cant be anxious. Does anyone want to point out the problems with this idea?
I like the idea that they don't see that I am recieving any input from a specialist, but list in the evidence the letter from my specialist psychotherapist. Yes, they really did. I have a joint bank account with my husband so have no problem with managing finances, that is the biggest leap I have ever seen there, one I responded to the first time, and they ignored.
I am angry that I have to even take this to appeal, because the level of stupid this has reached is unbelievable. but hey ho, its off to appeal i go.
They haven't read it. I repeat, they haven't even read my mandatory reconsideration statement. The one I spent days writing with a lot of help, that contained an evidence based log of how i was entitled to all the different points. They didn't even bother with it.
Ten weeks of waiting and they couldn't even be bothered to read it. I know this because the reasoning they used to come to the same decision is using the same flawed arguements in the first place that I countered with the mandatory reconsideration. The main one being that I was well dressed at the ATOS appointment, despite the fact I wrote that yes, of course, that is because my husband prompts me to dress in the morning. He was doing his job. They still stated this in the new decision letter.
They accept that knifes are triggering for me and that its not safe for me to use them, but as this isn't for "the majority of time" they think its ok. I'm not a professional knife thrower, so I don't tend to use knives for the majority of the day, only once or twice.
they seem very insistant that as I don't take any anti aniety medication I cant be anxious. Does anyone want to point out the problems with this idea?
I like the idea that they don't see that I am recieving any input from a specialist, but list in the evidence the letter from my specialist psychotherapist. Yes, they really did. I have a joint bank account with my husband so have no problem with managing finances, that is the biggest leap I have ever seen there, one I responded to the first time, and they ignored.
I am angry that I have to even take this to appeal, because the level of stupid this has reached is unbelievable. but hey ho, its off to appeal i go.
Wednesday, 8 June 2016
I have decided
70 days, 9 weeks 6 days later, the DWP have reconsidered the original decision to award me zero points and have decided to award me zero points..
The more intelligent amongst you might notice that the same amount of points were awarded before the reconsideration and after it. This is after 9 weeks and 6 days of careful consideration and thought as to how the hell they can get away with awarding someone with so much medical evidence zero points.
It took a lot of searching through the DWP assessment guide and the law to find the loopholes that made this possible. They employed the people at ATOS to assist in their quest as well, as the people at ATOS are more expert on the impact of disability, illness and impairment on peoples daily life than people themselves. They wrap this up to call it the medical assessment, but in reality it is more of a case of looking at the medical evidence and deciding which bits are going to make the claimant look like a fraud and use those.
The DWP decision makers letter is the best though. Every decision is clarified with the words I have decided and therefore. So if the DWP have decided you are perfectly able to do the activities set out, then you can naturally do them, a little like a modern day Jesus, take up thy bed and walk. I have been trying this whole malarky out in real life but I don't seem to have the DWP knack of this yet. I tried it out on my toddler tonight. I said with great authority "I have decided you are asleep" but all she did was pretend to snore and giggle when we erupted into tears of laughter at her reaction to DWP logic. I'm planning on trying this in other areas of my life soon too, I have decided that I have lost 3 stone in weight, I have decided that I have won the lottery, that sort of thing, will have to see how it goes. #bythepowerofATOS #bythepowerofDWP
I have to write this, I have to laugh. I was expecting this all along, and expecting to have to appeal. I am exhausted but being kept going by my lovely husband and toddler who love me unconditionally and usually more than that.
We are doing ok. When I got my last higher rate care and lower mobility DLA award three years ago we knew this would be my last DLA. We started saving where we could so we could have a buffer.
Our housing benefit is being paid (after a fashion, thanks to the council) and we have some practical support from our GP. We are getting food parcels from a food bank and generally surviving as best we can. We have a few tricks up our sleeves, namely this place https://www.approvedfood.co.uk/?afid=5d03ea where we can get nearly out of date food really cheaply. We have a charity shop that we can get 4 items of kids clothes for 1.50. We are using cloth nappies. We are surviving, on a practical level at least.
So, time to go the CAB again, get an appeal written and sent off, and start the wait all over again.
just to add, my DLA enabled my husband to claim carers and us income support. We can't claim other benefits because we can't comply with the requirements needed ( JSA and ESA for eg. would mean my husbands carers allowance claim would be in question, and my GP doesnt know enough about my condiiton to sign me off for ESA)
just to add, my DLA enabled my husband to claim carers and us income support. We can't claim other benefits because we can't comply with the requirements needed ( JSA and ESA for eg. would mean my husbands carers allowance claim would be in question, and my GP doesnt know enough about my condiiton to sign me off for ESA)
Sunday, 5 June 2016
the morning after
The morning after. I still feel empty and broken and iv still got a massive mess to sort out.
But I'm here.
As anyone who read the guardian article about me a few weeks ago will know I have PTSD, a fact i didn't want to reveal nationally but that's what the dwp and Atos forced me to do, just to highlight the sheer trauma they put me under in my assessment.
I think most people have heard of the fight/flight mechanism when faced with a difficult situation. You either fight or you run. Mine is kinda broken and I tend to run when I can't cope. It's not planned and its certainly not safe. I exist in a dream like state, not really aware of myself or things around me.
Im feeling more grounded today. More aware of myself etc. But not great. And would still like to disappear from the world I currently live in.
Im having to deal with the crushing reality of being the chief income earner, all our money as a family came from my DLA (and income support and carers) which has all stopped. All the responsibility falls on me. Im not making a political statement but I know full well that my husband would get more money as a single parent, and that really doesn't help in my current state of mind.
Im going to get in contact with the cab and my mp on Monday and see what's happening. With such a target driven culture, surely the dwp will make a decision soon, if only to make their targets
Saturday, 4 June 2016
ten weeks
I wish I could explain what ten weeks waiting for the dwp to reconsider their decision is like, properly. But I can only write down the facts as any emotion attached to this process has long since gone.
Give it another two weeks, next week, tomorrow. Every excuse to keep ringing back is given by the dwp operators, but none of them knows what it means in reality to tell someone late on Friday to try next week.
1st April they got my request to look at my claim again. They have admitted that the first medical was wrong and threatened me to undertake another, despite the medical evidence and other evidence I have submitted.
I have contacted the media 4 weeks ago and then felt forced to contact my mp 2 weeks ago. Im still waiting. With the excuse that it should be taking "up to 9 weeks". They don't know what to say when I say its been 9 weeks apart from try next week.
Ten weeks with no money, everything relied on my DLA before. Ten weeks of being impossible to budget because everything will be sorted soon, but nothing ever is. The extra costs don't go away because the benefits have gone. I tried living like that but it was impossible.
I cant cope with waiting anymore. I can't cope with the relentless fear of the telephone and letterbox. I cant cope with having to wait ten weeks to be once again told by the dwp that im not sick enough to qualify and have to start the wait over again for appeal.
This is me signing out. I have tried and failed to wait but can wait no more.
Friday, 20 May 2016
Mental health and PIP
I am concerned. I am really concerned.
In my PIP medical report it stated that I receive no mental health support so therefore don't qualify for having any recognisable mental health problem. What the ATOS assessor actually meant by that is that I don't qualify for any NHS mental health support.
I am a frequent reader of many forums and this theme seems to be appearing again and again. The ATOS assessors are justifying their reasoning using the fact that people are not accessing NHS mental health services, even if they have done previously and are now under the care of the GP.
I only need to do a quick google search to find these articles and headlines:
There can be little doubt that the mental health sector is under pressure, however understanding the nature of those pressures has been difficult.
http://www.kingsfund.org.uk/publications/mental-health-under-pressure
More than one in ten (12%) people with mental health problems are stuck on waiting lists for over a year before receiving talking treatments and over half (54%) wait over three months, reveals a new report launched by the We Need to Talk coalition of which the mental health charity Mind is part of.
http://www.mind.org.uk/news-campaigns/news/people-with-mental-health-problems-still-waiting-over-a-year-for-talking-treatments/#.Vz7TjRMrLnA
The mental health service in England is in crisis and unsafe, says one of the country's leading psychiatrists.
http://www.bbc.co.uk/news/health-24537304
This leads me to the conclusion that in order to be able to access NHS mental health services you need to be considered seriously unwell before they will even consider you for treatment, and even then that treatment will be severely limited by funding. All of this is well known to "service users" like myself. It is damn near impossible to get NHS help, which is why for me personally I used my Disability Living Allowance to pay for private treatment.
I now want to highlight the sort of treatment that is available on the NHS, usually for people whose mental health is deemed "mild" or moderate" (but considering how stretched the service is, the definitions are also stretching to include some people who would traditionally be classed as severe).
Cognitive Behaviour Therapy (CBT) is the NHS talking therapy of choice. It is relatively cheap and relatively effective. It can be delivered in a variety of different ways, depending on the client group (and sometimes geographic location).
http://www.nhs.uk/conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx
I want to highlight a few sentences from this page here:
"The course of treatment will usually last for between 5 and 20 sessions, with each session lasting 30-60 minutes."
"CBT cannot remove your problems, but it can help you deal with them in a more positive way."
It is not a cure, and it is a short term therapy. It relies on the person being in a position to be able to engage with the suggestions and to practice them daily and apply them daily. It doesn't (unfortunately) mean a nice quick fix and the person is sorted, it is trying to teach people how to live differently. There are problems with CBT, there is a good post here to read about its limitations here:
https://everydayproblemsolving.wordpress.com/2010/04/12/cbt-from-an-everyday-perspective-part-ii/
but I am not going to into details, everything has its limitations. That, in this post is a side issue.
The main issue coming from these two points is this: NHS mental health services are limited, and any therapy you can usually get from the NHS is CBT based, which is short term therapy, around 6-20 sessions.
Going back to the ATOS assessment, why are they assuming that anyone who doesn't access NHS mental health services is not mentally ill, when the NHS is so stretched that if and when people can get treatment it is only short term therapy, not designed to cure a persons mental ill health?
People with mental health problems are increasingly looked after by their GP, even those with severe problems. People are looking to private treatment because there is very little on the NHS. People are not lying or saying their condition is worse than it "appears on paper". It is the very simple fact that the help is not there for them to access.
I feel like people with mental health problems are being punished twice over. The NHS for failing to care for them and from ATOS and the DWP for failing to take this into consideration for benefits assessments.
In my PIP medical report it stated that I receive no mental health support so therefore don't qualify for having any recognisable mental health problem. What the ATOS assessor actually meant by that is that I don't qualify for any NHS mental health support.
I am a frequent reader of many forums and this theme seems to be appearing again and again. The ATOS assessors are justifying their reasoning using the fact that people are not accessing NHS mental health services, even if they have done previously and are now under the care of the GP.
I only need to do a quick google search to find these articles and headlines:
There can be little doubt that the mental health sector is under pressure, however understanding the nature of those pressures has been difficult.
http://www.kingsfund.org.uk/publications/mental-health-under-pressure
More than one in ten (12%) people with mental health problems are stuck on waiting lists for over a year before receiving talking treatments and over half (54%) wait over three months, reveals a new report launched by the We Need to Talk coalition of which the mental health charity Mind is part of.
http://www.mind.org.uk/news-campaigns/news/people-with-mental-health-problems-still-waiting-over-a-year-for-talking-treatments/#.Vz7TjRMrLnA
The mental health service in England is in crisis and unsafe, says one of the country's leading psychiatrists.
http://www.bbc.co.uk/news/health-24537304
This leads me to the conclusion that in order to be able to access NHS mental health services you need to be considered seriously unwell before they will even consider you for treatment, and even then that treatment will be severely limited by funding. All of this is well known to "service users" like myself. It is damn near impossible to get NHS help, which is why for me personally I used my Disability Living Allowance to pay for private treatment.
I now want to highlight the sort of treatment that is available on the NHS, usually for people whose mental health is deemed "mild" or moderate" (but considering how stretched the service is, the definitions are also stretching to include some people who would traditionally be classed as severe).
Cognitive Behaviour Therapy (CBT) is the NHS talking therapy of choice. It is relatively cheap and relatively effective. It can be delivered in a variety of different ways, depending on the client group (and sometimes geographic location).
http://www.nhs.uk/conditions/Cognitive-behavioural-therapy/Pages/Introduction.aspx
I want to highlight a few sentences from this page here:
"The course of treatment will usually last for between 5 and 20 sessions, with each session lasting 30-60 minutes."
"CBT cannot remove your problems, but it can help you deal with them in a more positive way."
It is not a cure, and it is a short term therapy. It relies on the person being in a position to be able to engage with the suggestions and to practice them daily and apply them daily. It doesn't (unfortunately) mean a nice quick fix and the person is sorted, it is trying to teach people how to live differently. There are problems with CBT, there is a good post here to read about its limitations here:
https://everydayproblemsolving.wordpress.com/2010/04/12/cbt-from-an-everyday-perspective-part-ii/
but I am not going to into details, everything has its limitations. That, in this post is a side issue.
The main issue coming from these two points is this: NHS mental health services are limited, and any therapy you can usually get from the NHS is CBT based, which is short term therapy, around 6-20 sessions.
Going back to the ATOS assessment, why are they assuming that anyone who doesn't access NHS mental health services is not mentally ill, when the NHS is so stretched that if and when people can get treatment it is only short term therapy, not designed to cure a persons mental ill health?
People with mental health problems are increasingly looked after by their GP, even those with severe problems. People are looking to private treatment because there is very little on the NHS. People are not lying or saying their condition is worse than it "appears on paper". It is the very simple fact that the help is not there for them to access.
I feel like people with mental health problems are being punished twice over. The NHS for failing to care for them and from ATOS and the DWP for failing to take this into consideration for benefits assessments.
Sunday, 15 May 2016
down the rabbit hole (the week that was)
i dont really know where to start with this blog. Mainly because so much has happened and its all floating around in my head, feeling like it is crushing me down. So I guess I will start at the beginning.
After 6 weeks of waiting ATOS replied to us regarding our complaint. They admitted they did wrong, the assessment should have never taken place in the room with no soundproofing and it was only a temporary measure used for that day.
I got angry, I got very angry, I felt like ATOS were saying that they did it and they don't care, after all I am just a disabled person, why does it matter?
So, I wrote a letter to the DWP adding this evidence to my original reconsideration statement, which is still in progress, nearly 8 weeks after submission.
I also contacted the guardian. I am of the opinion that the personal is very much political. I didnt go to them with my story for my own personal gain, I went for everyone who didn't have a voice, or a letter from ATOS admiting their mistakes. I went to expose the systemic abuse that is happening to disabled people right now in the benefits system. Quite simply, it was bigger than myself. I felt willing to forgo my privacy to expose yet another failing in the system.
So, the article was written:
http://www.theguardian.com/commentisfree/2016/may/12/benefits-assessment-ptsd-benefit
and it was well written.
But then I felt like Alice as I tumbled down the rabbit hole unable to stop the chain of events, either as a result of the article or my letter to the DWP highlighting the ATOS complaint letter.
I received a letter on friday informing me of another assessment, this time conducted in my home, next week. I am currently in panic mode. I can't describe what im currently going through, as it is really hard to put down into words what the thought of another assessment is doing to my head. I am also very clear that this will not be happening in my home. I need it to take place in a grey, anonymous office away from my life and certainly away from my place of safety in my home. Having ATOS there will feel like a home invasion. Just NO.
I have rung both ATOS and the DWP and neither know why I have been issued with this appointment. I have spoken to both the CAB and another independent advice service who are both unsure as to what is happening. We are awaiting a call back from the DWP tomorrow to see if a manager can tell us what is going on.
In the mean time my husband has written a letter explaining why another medical is inappropriate at this stage. Its just too late for them to be gathering evidence.
I have also taken a step that I didn't think I would have to, I have contacted my MP. I didn't want to because it feels like I am being selfish, but as I am currently travelling down the rabbit hole I need all the help I can get to land safely and move on from this experience.
Answers on a postcard as to whats going on, and whats going to happen next.
Monday update: Im not really sure whats going on anymore. The DWP and ATOS are denying all knowledge of ever speaking to each other and I feel like Im in the middle of some sort of lovers tryst, or fight between them. I just want them to throw out the mandatory reconsideration so I can take it to appeal for them to laugh at it all. ATOS or the DWP say theres not enough medical evidence to make a paper based medical happen, but then say that its too personal information, but then say they are the only ones able to tell me what my life is like on a day to day basis.
and they wonder why the suicide rate is going up...
After 6 weeks of waiting ATOS replied to us regarding our complaint. They admitted they did wrong, the assessment should have never taken place in the room with no soundproofing and it was only a temporary measure used for that day.
I got angry, I got very angry, I felt like ATOS were saying that they did it and they don't care, after all I am just a disabled person, why does it matter?
So, I wrote a letter to the DWP adding this evidence to my original reconsideration statement, which is still in progress, nearly 8 weeks after submission.
I also contacted the guardian. I am of the opinion that the personal is very much political. I didnt go to them with my story for my own personal gain, I went for everyone who didn't have a voice, or a letter from ATOS admiting their mistakes. I went to expose the systemic abuse that is happening to disabled people right now in the benefits system. Quite simply, it was bigger than myself. I felt willing to forgo my privacy to expose yet another failing in the system.
So, the article was written:
http://www.theguardian.com/commentisfree/2016/may/12/benefits-assessment-ptsd-benefit
and it was well written.
But then I felt like Alice as I tumbled down the rabbit hole unable to stop the chain of events, either as a result of the article or my letter to the DWP highlighting the ATOS complaint letter.
I received a letter on friday informing me of another assessment, this time conducted in my home, next week. I am currently in panic mode. I can't describe what im currently going through, as it is really hard to put down into words what the thought of another assessment is doing to my head. I am also very clear that this will not be happening in my home. I need it to take place in a grey, anonymous office away from my life and certainly away from my place of safety in my home. Having ATOS there will feel like a home invasion. Just NO.
I have rung both ATOS and the DWP and neither know why I have been issued with this appointment. I have spoken to both the CAB and another independent advice service who are both unsure as to what is happening. We are awaiting a call back from the DWP tomorrow to see if a manager can tell us what is going on.
In the mean time my husband has written a letter explaining why another medical is inappropriate at this stage. Its just too late for them to be gathering evidence.
I have also taken a step that I didn't think I would have to, I have contacted my MP. I didn't want to because it feels like I am being selfish, but as I am currently travelling down the rabbit hole I need all the help I can get to land safely and move on from this experience.
Answers on a postcard as to whats going on, and whats going to happen next.
Monday update: Im not really sure whats going on anymore. The DWP and ATOS are denying all knowledge of ever speaking to each other and I feel like Im in the middle of some sort of lovers tryst, or fight between them. I just want them to throw out the mandatory reconsideration so I can take it to appeal for them to laugh at it all. ATOS or the DWP say theres not enough medical evidence to make a paper based medical happen, but then say that its too personal information, but then say they are the only ones able to tell me what my life is like on a day to day basis.
and they wonder why the suicide rate is going up...
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