Archive for the ‘ update ’ Category

On Cancer & Chronic Illness

Heya! It’s been a weird year for me, loads of stuff, a lot of it crippling anxiety and a complete loss of motivation, has prevented me from blogging. I’m sorry about that.

As you probably know, I’ve been dealing with chronic health problems for years now; chronic pain, vomiting, nerve damage, gastrointestinal damage, and joint hypermobility. I developed a hiatus hernia in September which was having some pretty severe side effects, so I had an abdominal CT scan at the start of this year. It didn’t just find the hernia, but it also found a shadow on my right kidney. I had a more detailed scan in March, and in April a very nice Urologist and a Macmillan nurse told me the mass was solid, and most likely cancerous (over 90% chance), otherwise it would be precancerous with a very high chance of becoming cancer in the future. They tabled surgery within 4 weeks, and got it out. I’m currently recovering after having a open partial nephrectomy and getting the 21 staples removed this morning.

I’ve been thinking about the ways in which cancer is treated differently to other chronic illnesses, many of which also have pretty depressing prognosis’s; Continue reading

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.

Where Have You Been?

I’ve been rather absent from the world over the last month because life has gotten in the way of activism which in some ways is a shame but mostly it’s to be expected from time to time. Preparing to move house and health issues have eaten up my time and energy. Even with that going on there have been a couple of high points so  I thought I’d post an update.

ESA


I thought I’d start on a positive note. I’ve had some great news, I appealed a DWP decision to place me in the WRAG (Work Related Activity Group) for ESA (Employment Support Allowance) on the basis I am virtually unable to walk (or unable to walk without severe pain & discomfort). I sent in a letter quoting the criteria for the support group I believed I met, told them exactly which doctors letter confirmed it and waited to hear if it would be enough. It turns out it was! Now I’m in the support group and able to do as much voluntary work as I can manage. 


To me it doesn’t feel any different to being the the WRAG if I’m honest. My local Igneus branch (the company paid by the DWP to get sick/disabled people into work) didn’t think I stood a chance in hell of being employed when I was in the WRAG so they just left me alone to carry on doing little bits of voluntary work here and there. I am well aware some other people are not as fortunate.

Health


My personal health has not taken any dramatic turns for the worse over the last month but I have been caught in a rather naff flare up. 


For those not familiar with the term, a flare up is pretty common when you have a chronic condition. They happen when something causes the condition to get really bad for a few days or sometimes weeks. It’s not that the condition has taken a turn for the worse, it’s just that it goes through a bad patch. After a flare up it’s common to feel ‘set back’. A week in bed or a few days of not eating can leave you feeling weaker than before. A mental health flare up can leave you feeling rather rattled or exhausted for a while afterwards. 


In my case I had a pretty nasty infection for over a week then as I was recovering my bowel became twisted which has caused a lot of pain and discomfort. I’m used to having a twisted bowel, it happens at least twice a month and usually resolves within 8 hours of the pain getting to that unbearable point. Unfortunately this episode has been going on for 4 days now and is wearing me (and my Oramorph supply) down. Luckily the twisting seems to have only partially blocked it so far so I’m not going into hospital but I’m still in a lot of pain with it.


As a result I’ve spent the last 3 weeks in rather ill health which has really negatively impacted on my ability to do much more than moan about how unwell I feel. 

Netroots UK


I went to Netroots UK at the end of June to try and get some ideas for my activism. I was lucky enough to meet a bunch of wonderful Welfare Warriors and to have a chance to chat to some other people I’ve admired for quite some time. 

I left feeling inspired to keep pushing my local and political work as well as assisting with national campaigns where I can. I’ve spoken to a few people about getting involved in some exciting projects once I’ve finished moving house, if any of them get off the ground I’ll keep you posted.


Moving

I’m still moving house which is taking longer than initially expected because of my bout of extra-ill health and the house needing a bit more work than we originally thought it would. Still, we have done a lot of work and it’s paying off. It all looks far better now and should only get better as we continue. I’m very excited about getting in now, luckily it should only mean waiting 3 weeks now!

It’s April Already!

I’m still unwell so I’ve cut down my activism work because something had to give and whilst I love trying to fight for my rights it is really draining.

I’m standing as a candidate for the Green Party in the council elections which is quite exciting. The area is a Labour safe-seat so I’m not going to kid myself that I’ll get more than a fraction of the vote but still, I think it’s important to keep the party on the radar and give locals the option of another choice.

I’m excited about speaking at the INTERSECT conference in Bristol this May. It’ll be great to meet other activists and hopefully I’ll be able to explain why disability rights are a feminist issue in a clear and concise manner.

I have also been doing some low-level local activism in my area by calling the council and speaking to them about lack of lowered kerbs and poor short-term civic planning with regards to disability. My bank and a few other companies that are big enough to know better have also been on the receiving end of some calls and letters pointing out that I think it would be reasonable for them to improve access given their resources and provision of a public service. It may not do much, but hopefully if someone else complains in the future it will strengthen it until they do something.

So that’s me, what have you been up to?

A Quick Update

I’ve not really been able to sit and blog in the last couple of weeks, which I am sorry about. I have been having trouble with a condition flaring and writing is just one of those things that has been too hard. I don’t think I’ve had a night where I’ve got more than 2 hours uninterrupted sleep in the last fortnight and it has eaten away at my ability to really do much. I’m sure many of you have often been in the same boat.

Still, I have been trying where I can to keep myself busy with useful work and I’ve had my favourite ‘fight back’ song playing as inspiration.

Mis-Shapes by Pulp – a transcript of the lyrics is at the bottom of the post.

The Welfare Reform Bill will be back in the Lords tomorrow. The Peers will consider the amendments made by the House of Commons, which was to refuse the Lords amendment on the “Bedroom Tax”, and they will most likey back down. If the Lords pass no more amendments then the WRB will get Royal Assent (because the Queen really has no power over what she signs or doesn’t) and it will become official. If you want to remind Lords to actually turn up and debate the WRB after the Health Bill, as well as explaining that we are watching then I listed I lot of ways you can contact them here.

So far the government haven’t accepted one amendment and the Lords haven’t forced the issue so an awful lot of nastiness has been passed already. The real struggle is going to be providing support, information and care for those who will be hit by the reforms in the all too near future. That is what I’m starting to focus on and it’s taking a lot of work. I don’t really have anything solid to show for it yet but hopefully in a few months I should be able to write something positive about it all.

Moving away from the WRB, I’m pleased to say that it’s International Women’s Day on March 8th. Given that today the guardian reports that there have been massive failings found in the way Police in the UK handle reported rape’s “Only three out of 43 forces keep up to date area profiles, while 2,131 reported offences were logged as ‘no crimes’” I think it’s clear there is still a fair way to go before women get equality in this country.

That said, On Saturday March 3rd Million Women Rise is holding a huge march & rally in London to coincide with IWD. I’m going to be making the hectic trip to London with my powerchair and I know quite a few other fantastic people will be too, hopefully I’ll get a chance to see some of you there! It promises to be a wonderful day.

Transcript of Lyrics:
Mis-shapes, mistakes, misfits. Raised on a diet of broken biscuits, oh we don’t look the same as youWe don’t do the things you do, but we live around here too. Oh really. Mis-shapes, mistakes, misfits, we’d like to go to town but we can’t risk itOh ’cause they just want to keep us out. You could end up with a smash in the mouth just for standing out.

Oh really. Brothers, sisters, can’t you see? The future’s owned by you and me. There won’t be fighting in the street. They think they’ve got us beat, but revenge is going to be so sweet. We’re making a move, we’re making it now, we’re coming out of the side-lines. Just put your hands up – it’s a raid yeah: We want your homes, we want your lives, we want the things you won’t allow us. We won’t use guns, we won’t use bombsWe’ll use the one thing we’ve got more of – that’s our minds.


Check your lucky numbers, that much money could drag you under, oh. What’s the point of being rich if you can’t think what to do with it? ‘Cause you’re so very thick. Oh we weren’t supposed to be, we learnt too much at school now we can’t help but see. That the future that you’ve got mapped out is nothing much to shout about. We’re making a move, we’re making it now,We’re coming out of the side-lines. Just put your hands up – it’s a raid. We want your homes, we want your lives,we want the things you won’t allow us. We won’t use guns, we won’t use bombsWe’ll use the one thing we’ve got more of – that’s our minds.


Brothers, sisters, can’t you see? The future’s owned by you and me. There won’t be fighting in the street. They think they’ve got us beat but revenge is going to be so sweet. We’re making a move. We’re making it now. We’re coming out of the sidelines. Just put your hands up – it’s a raid. We want your homes, we want your lives, we want the things you won’t allow us. We won’t use guns, we won’t use bombsWe’ll use the one thing we’ve got more of – that’s our minds. And that’s our minds. Yeah.

%d bloggers like this: