Every day is like...

3/30/2008 07:14:00 pm BenefitScroungingScum 12 Comments

It was a good job I thought to ask for the location of Chuck's nursing home. Yesterday, driving back from the local supermarket I spotted Chuck. Out on his own and about to wander onto a main road.

Ziggy and I had gone to get food supplies planning to eat and watch bad movies. When we saw Chuck I stopped and Ziggy got out of the car to see if he could help but Chuck just wanted to go to the police station again. Once I got out of the car and said hello he was quite happy to come with us though he was less keen once he found out we were taking him back to the home.

The nursing home is just a few roads away from where I live so once there we took Chuck inside and as promised stayed to have a cup of tea with him. It's obviously a decent, well run home with friendly staff who know all the residents by name. That doesn't matter to Chuck who just wants to go home. He just can't quite remember where that is.

After the Chuck detour we reverted to the eat so much you can't move plan. Now I'm just waiting for the final run down of the weekend's activities but so far:

Red pulled. He's a registrar which is what she wanted, I'm not sure if his specialty makes him more or less attractive to her. He seems keen though and they're off out tonight
Ziggy, having spent most of saturday trying to work out how to go to a party without his girlfriend finally bowed to the pressure and took her with him. Which is how Ziggy's best friend Pete the vet got set up with Ziggy's girlfriend's best friend. Neither of them have been seen since.
The BYM is, shockingly still with his girlfriend. Shockingly as all they do is row. Keeps the rest of us amused and with gossip though.
Even Toes has a new girlfriend. He told me Fruitrock has been making threats to kill her though. Probably not wise as this girl's father is a government minister in her home country. Again, keeps the rest of us amused and in gossip.

That's small towns for you though, full of random people and wonderful for it.

As for me, well I'm no fan of politicians but I never thought I'd have to add 'wrecking my love life' to my list of reasons for hating them.

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He answers to Chuck

3/27/2008 06:52:00 pm BenefitScroungingScum 15 Comments

This afternoon's bright sunshine drew me out of the house for an extended chocolate death walk. I pootled round my route, then bumped into Ziggy practicing staff outside his house. It was so glorious and such a pleasure to be out that I decided to do the actual chocolate bit of the death walk and set off for the garage arm in arm with Ziggy's girlfriend to buy an ice lolly.

On our way home, ice creams in a bag we saw an elderly gentleman coming towards us. Well dressed and with visible gold jewelery and watch but no coat something seemed amiss and as we reached the man he asked us for directions to the local police station. He stood in the road as he asked us, and told us of the men who had taken over his home and trapped his wife in it. He was quite confused and most insistent he just wanted to know how to get to the police station.

There is no police station in our town, and the next one is a couple of miles down the road, only manned part time so we insisted he could use my mobile phone to call, or that we would take him there if he wished. By this time we'd already established that although he knew his name, he didn't know where he lived, where he was or where he wanted to go and neither of us felt we could leave him stood confused and vulnerable on the side of the road.

I dialled 999 and was put through to the police, explaining the situation to the man in the control room. I stressed the vulnerability of the gentleman and how we'd found him just wandering and confused and asked for someone to come as soon as they could. Having given my name and address and established that the gentleman would come with us, I said that we would take him back to my house and make him a cup of tea whilst we waited for the police. Given the priority of the situation I was glad to hear someone would be out asap, but less glad to hear that it could be up to an hour.

We managed the few meters home and threw a very disgruntled cat out of the armchair so we could sit the old man down. Once sat with a cup of tea he seemed quite happy with both us and his surroundings, although still upset and concerned about the men in his house, and worried that he might get into trouble from the police. We reassured him frequently that no-one would be angry with him, and that the police would be only too glad to help him. Whilst we waited we asked the man about whether he had any children and if he knew their names hoping we could find a phone number for them. Although he could tell us his daughter's name and that she was married with children, he didn't know what her husband might be called so we could find out her married name, or where she lived. He was alternating between thinking he was still in Ireland and worried about getting back home to Hollywood.

He told us of how he met his wife during his national service and how they'd married just afterwards, her 19, he 20, frequently telling us that she had died just a few weeks or few days ago. It was obvious someone would be missing him and that as we'd given the police a name and description just kept reassuring him that someone would be here for him soon and not to worry about anyone being cross, they would just be glad to see him.

After 20 minutes or so the police phoned back, confirming the man's name and explaining he answered to Chuck. They'd found where he lived. As we thought from the man's description of undoing 4 locks and 'escaping', he was missing from a local nursing home. The person calling from the police explained that they had not been able to find a spare officer anywhere to attend the call, but they had spoken to the nursing home and someone would be round soon to collect him.

Shortly afterwards a van pulled up and a very anxious man knocked at the door explaining that his wife ran the nursing home and that they currently had builders in. This had obviously upset Chuck who thought they had taken over his home and his wife, and whilst tea was being prepared he had managed to slip out unnoticed. Chuck seemed perfectly happy to go with the man, albeit a bit confused by the white van he was to get in. Whilst Chuck was being helped into the van a car pulled up and a frantic looking woman arrived to explain she was the person in charge and what had happened.

Chuck lost his wife six months ago and had to move from his home to this area to be close to his daughter. Usually she visited him every day, but was on holiday at the moment and so Chuck was more confused than normal. She thanked us for taking care of him and we made sure to find out the name of the nursing home in case we found him again.

It was all just so sad.

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3/26/2008 04:58:00 pm BenefitScroungingScum 7 Comments


Phone call from Ziggy earlier today. He thought it would amuse me to hear that he'd just walked past the junkie hangout Probation Office and through their large windows had seen an empty bottle of Oramorph lying on the floor.


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Liar, liar pants on fire

3/26/2008 12:28:00 pm BenefitScroungingScum 9 Comments

Gordon Brown ' it used to be conservative councils who cut these services, now it is liberal and SNP councils..I hope public opinion will ensure these most vulnerable members of society continue to receive services' (from memory of live PM Q's in response to question raised about care in Aberdeen. )

Fuck off. And then fuck off again you lying twat. It's completely irrelevant which councils 'used' to cut such services.

What is relevant is that 75% of councils now ration care.

Lying, disability denying twat.

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The thumbs have it!

3/24/2008 07:45:00 pm BenefitScroungingScum 18 Comments

I'm generally known to be scatty, but I seem to have surpassed myself this time.

On Saturday both Ziggy and his girlfriend thanked me. I had no idea why or what for, but hey, its always nice to be appreciated.

When I questioned what I might have done to deserve such effusive gratitude they both blushed. And then some.

Amidst the red cheeks and giggles I asked again what I could have done that was so wonderful. Ziggy reminded me of the out of date Bailey's incident.

Now that I do remember, at least some of it anyway. I insisted upon making a tribute to Anthony Gormley. Out of gingerbread men. That was before I drank the out of date Bailey's, fell over alot and had to be sent to bed.

What I didn't and still don't remember is the sex advice I was handing out that night. Allegedly. Ziggy would say no more than it involved thumbs.

Two days later and I still have no idea what I might have suggested he do with his thumbs to produce such pleasure. It seems to have worked though, so perhaps drunken sex advisor is my true vocation.

Any thoughts on what I might have suggested, comment away. Please. It might just trigger my memory!

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More Wetherspoons nonsense

3/19/2008 11:01:00 am BenefitScroungingScum 29 Comments

Aaargh. Now I'm angry. I've just spoken to someone from the police licensing department, who in fairness left a message for me last week. I didn't get it, but that's talktalk for you.

The police have spoken to the manager who gives a different version of events to me. He is insisting that I was asked to leave to comply with licensing laws and that by the time he forced us to leave the pub had to be cleared to comply with the law.

I attempted to explain to the police officer that the issue was with Disability Discrimination laws and that they provide for reasonable adjustments to be made, and given that it is not unreasonable to allow someone to sit safely whilst a crowd clears that the DDA should apply. The policeman insisted he knew nothing about that and when I asked him if there was a police department within this region who deal with disability crimes he said he didn't know. He insists it is not a police matter.

The policeman seemed to think I would want the manager sacked. I don't, I just don't want him to think it is in any way acceptable to behave in such a manner. The reason I complained was to try and prevent similar events. To my mind training in disability awareness (as well as how to communicate without screaming at people) would be the appropriate outcome.

I'm now more aware that wetherspoons are in the wrong because of the way they continue to respond to this. A 'without prejudice' letter is supposed to mean the writer is preventing their correspondence from being seen by a court, and to use it in this manner shows me that is where wetherspoons expect this to end up. The police also suggested, rather blithely I 'get a lawyer', which for anyone of average means in this situation would be unlikely, the costs being prohibitive. They also suggested that I get in touch with the area manager of wetherspoons directly.

Whilst I appreciate all the suggestions about contacting the media, I'm deeply reluctant to do that for all sorts of reasons, not least because that should not be the only recourse to a satisfactory resolution. I also don't want the attention.

I'm not sure what, if anything I will do next, but I do know this. What should have been a simple apology and assurance this kind of situation wouldn't happen again has ended up making me feel as hurt, angry and abused as I did when the incident first happened. I feel utterly powerless in my circumstances to go up against a company like wetherspoons with all their resources who are capable and prepared to manipulate the facts to suit them whilst knowing they are in the wrong. The whole point of Disability Discrimination law was to prevent such incidents happening and to empower those in situations it has happened to. Overwhelmingly I have felt that the police do not understand that is the main issue, and when pointed out to them they don't care and don't have the training to understand this is equal to any other discriminatory crime. After all, if that manager had screamed racial or sexual abuse the police would be on to it like a shot. Disability it seems really doesn't matter and I am left in no doubt about that.

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Wetherspoons. The Reply

3/18/2008 11:18:00 am BenefitScroungingScum 10 Comments

It speaks for itself. As I'm currently without scanner I have just typed the entire letter out for your viewing pleasure. And pleasure it is. Or maybe that should be fantasy.

29th February 2008
Without Prejudice

Dear Miss [Bendy Girl]

I am writing further to my recent correspondence, I apologise for the delayed reply.

I am sorry to hear of your disappointment when visiting the [wetherspoons pub in question. Place name incorrect]. I would like to assure you that we do treat all customer feedback seriously and appreciate you writing to us.

All of our pubs must be empty at closing time to ensure compliance with the license restrictions. As part of this the staff members will circulate the pub to ask all customers to leave at the end of the night. Whilst there is no strict company policy how this is done, we would certainly expect any requests of this nature to be made in a professional and courteous manner.

I understand that your friend was asked to leave, not due to the complaint he was making but due to the manner in which he remonstrated this to the manager. Following this the Manager was happy to allow another member of the party to remain with you as requested. I appreciate that you and your party feel this action was unjustified.

I am sorry that you and your group feel this issue was not dealt with satisfactorily at the time, your comments have been passed to the Area Manager who has performed a thorough investigation and the relevant action has been taken.

Once again, we have taken your comments seriously and I do hope you will not be deterred from visiting our pubs again.

Yours sincerely


Customer Services.

I spoke to the local licensing department on the phone (prior to receiving wetherspoon's response) who told me that they had all be horrified by the incident but did not think there was anything they could do. They informed me that the only way they can act to remove a license is if the holder is convicted of a criminal offence, and followed that up by suggesting both that I 'get a lawyer' and that I contact the police. This despite their assurances that they had already passed the matter over to the police department who deal with licenses and most importantly (according to them) the pub watch scheme. I've heard nothing from them since

I did contact the police licensing department, some two weeks ago. I'm still waiting for them to get back to me.

The irony of it all is of course had Wetherspoons simply written a standard letter of apology I would have accepted that (probably) not exactly having the desire to fight an unnecessary battle. However, all they've done with this letter is tell me they know they are in the wrong, and that they aren't willing to do anything about that. I'm not sure what the next step is.

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Sunday Evening

3/16/2008 08:10:00 pm BenefitScroungingScum 12 Comments

Right, thats quite enough doom, gloom and despondency for now. Especially as the joys of Wetherspoons response letter are yet to come.

A sofa day today. Just after I got our of bed and realised that my arms and legs wouldn't stop shaking from sheer exhaustion so I parked myself here with the laptop and haven't moved. Well, apart from 3 million trips to the loo. Of course. All worth it as yesterday was such a lovely day.

I went to Red's parents for lunch. They live in the middle of nowhere and Red wanted me to meet them and see her family home. I live in a lovely part of the country, but I was stunned by the beauty of where she lives. To see nothing but softly rolling green hills all around you and hear only sounds of nature was a huge pleasure. Red's mum had made us lunch, I was enormously touched when I found out she had bought and made gluten free pasta. After lunch and meeting the gorgeous cats Red and I went shopping.

We'd brought the wheelchair with us so could both browse to our hearts content. Red is a very petite 5'2 size 8 so even though I'm (fortunately) smaller and lighter I always feel a little concerned when she is pushing me. For her not me. Turned out I should have been for both of us as when we were trying to cross a road in the rapidly growing twilight we got stuck. You have to have the strength to slightly tip back a wheelchair to get it up even the lowest of kerbs, like you would with a pushchair but more so. Even at my size it is quite understandably impossible for Red to manage this and so as we crossed the road, on the pedestrian crossing and tried to get up the lowered kerb to get back on the pavement we just got stuck. An attempt to tip the wheelchair back failed, so it was obvious I was going to have to get out. By this time of course the lights had changed in favour of the cars, we were both wearing dark clothing and I was sat in a dark coloured wheelchair. There was a car coming towards us, which did have space to pull into the lane behind us but I don't know if the driver would have managed to see us. Fortunately, just as I was trying to get up (we'd piled bags of shopping on my lap) a couple were crossing and they stopped, the man asking if we needed some help. He pushed me onto the pavement without difficulty, but not without tipping the wheelchair back ever so slightly as we'd been unable to do. We were both very grateful and thanked them as they walked away.

Despite near death wheelchair versus car incidents we had a great day and came home to collapse at mine in (new) pj's. Red made dinner, and before she went home did the washing up telling me to sit down and stop trying to help. The wobbling near hot things must have been disconcerting. We then slumped in front of The 5th Element ignoring that to talk about men, clothes and shoes. Mostly men though. Men,corsets and stap ons. It was all such a 'normal' day. That's why it was so special.



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No special treatment - The Emotional Response

3/16/2008 01:31:00 pm BenefitScroungingScum 4 Comments

These are the things I don't say to my friends, those who care about me, or even my doctors. The details I gloss over, skirt around. Hide. Some things in life are so difficult, so painful and raw that to speak them out loud places an unbearable burden on the listener. This blog is the place to tell the world what 'having a bad day' really means. Practically, physically and emotionally.

I may know people eccentric enough to eat cat food for fun, but I could never tell them how close I came. They don't understand. They don't want to understand. And me, I'm too embarrassed. Too proud.
See, I survived being just cold enough and just hungry enough for just long enough to have far too good an idea of what that really means. And how much worse it can get. Until you've stared at a tin of cat food and fully understood why pensioners end up eating such stuff, well, take it from me, you don't want to know that thought process. I'm lucky, sat here in the warm, full of breakfast, my life long since improved from those worse moments. So lucky. Because out there, right now, there are men, women and children too proud and dignified to ever let on how they're existing. Someone needs to.

Grateful as I am for everything I receive I'd really prefer not to need it. Just having to be grateful all the time can be extremely wearying.

I can't say I ever wish not to have Ehlers Danlos Syndrome though. EDS is just one of the many things that go to make up me, I can't imagine life without it; I wouldn't look like me, think or act like me if I did not have EDS. I would not exist, someone else born instead of me.

Saying that, to think about how things could be had I been diagnosed at the right time instead of a lifetime being told I was making everything up and attention seeking is something else entirely and can only take me to a very bad place. The only person that would damage is me. Emotionally that is. Physically its decades too late, the damage is done. To think about all that is a one way trip to being bitter and twisted. With no return. So I don't. I made a very conscious decision that I wouldn't and worked hard to stick to it. I lay in bed one night desperately ill and in pain and came to a realisation. My choices were stark. I could continue to deteriorate physically and emotionally to a point where either I would die or end up in some sort of nursing home. Or I could fight. I fought. Which sounds absurdly easy put just like that.

That was almost four years ago. I'm still fighting. Every day.

A diagnosis of EDS made at the correct time could have given me the opportunity to make appropriate career choices, and in all likelihood still be in full time professional employment now. It would have avoided years of failed, pointless surgeries all of which left me bewildered by my increasing level of disability, and all of which were somehow 'my fault' for not succeeding according to the surgeons who performed them.

It would certainly have avoided putting me through a lifetime of believing those who insisted I was no more than weak and lazy must be right and so further damaging my body by forcing myself to try and carry on regardless. It would have avoided the years of emotional damage which led to my thinking that perhaps I was in fact so mentally unwell that even I did not know it, and therefore must need the 'psychological help' all those highly qualified doctors insisted was the answer to my attention seeking. And then never did refer me for.

It would have avoided the decision I made the night before I was diagnosed. The one I made only after seeing the GP who saw fit to laugh in my face and insist that there was absolutely no way I had EDS, or was even hypermobile. The decision that would have ended my life. Despite knowing with every instinct I had that EDS was indeed the root cause of all my problems. I was so traumatised, so beaten down that I believed that GP. Why on earth wouldn't I? After all, he was just one of many so filled with their own arrogance it was impossible for them to conceive that an attractive, intelligent young woman might just have better things to do with her life than go looking for negative attention from overweight, deeply unattractive middle aged men with wildly overinflated ideas of their own self importance. Something which of course is freely available at a higher quality in any pub throughout the land. How could they possibly admit they just didn't know what was wrong with me? Far easier to instead blame the patient.

It could and should have avoided the high level of physical disability I now have, particularly had it been made early enough in life when I was, despite the underlying condition, managing to stay extremely fit and active.

Like I say. To think about all that is a one way trip to bitter and twisted.

I was determined my experiences should help prevent others having to suffer unnecessarily in the way I have done. When I hear things like Girl, dislocated saying how much this blog helps her, or my GP (the new excellent one) telling me he has correctly diagnosed EDS in several other patients, including a young child in whom he would never have known to look for it or how* if I were not his patient, it goes some way to making me feel better. Whilst at the same time breaking my heart to hear that the 6 year old child whose diagnosis I helped to facilitate is still being dismissed and mistreated by the very same paediatrician who treated me so appallingly when I was a child. Doctors are just as guilty of the 'but you look so normal' as everyone else. Perhaps more so when they of all people should know better.

I don't think about what might happen to me if the government's proposed threats/changes actually materialise. I firmly push it to the back of my mind, burying it as deep as I can so not to be overwhelmed by panic and fear about a situation I can do nothing about. What they (and the Conservatives) either fail or refuse to see is that they have suggested nothing to address the true problem the benefit system is facing. The Can Work Won't Work brigade. That's a bit too difficult, might take real thought, understanding and change. It's far easier to attack the most vulnerable in society and hope the public don't cotton on. Too much.

Instead myself and people just like me up and down the country are scared. The kind of fear that is hard to describe. The type that sits, deep in the pit of your stomach and travels up in to your throat where if you let it it will clench it's fist and take hold starving you of breath.

But now you know.


* Shockingly little is taught about EDS (and the other connective tissue disorders) to medical students. Apart from how rare it supposedly is. The child in question was brought to the GP because the parents could not understand why s/he was so clumsy and falling so frequently. They had no idea their child was experiencing joint problems. Thanks to the knowledge my GP had gained from treating me and the literature provided by the EDNF he thought to perform the very quick initial checks for hypermobility and ask pertinent questions. With any luck not only has a lifetime of emotional pain been avoided for this child, the physical pain and level of disability can be addressed at this early stage, and on a financial level reduce the burden on the welfare state.








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No special treatment - The Practical Response

3/13/2008 04:19:00 pm BenefitScroungingScum 20 Comments

Rather than answer comments individually, for the sake of ease (and my hands) I decided to put it in the form of follow up posts.

I'll start by saying I'm incredibly grateful for everything I receive. If ever I'm feeling a bit sorry for myself I only have to consider how phenomenally lucky I am to be living in a country that considers the financial and social protection of it's most vulnerable citizens to be a duty of the state.

I am ashamed to tell people I'm in receipt of state benefits though. It didn't used to be this way, but the perception that those of us forced to rely upon such help are all lazy, scrounging scumbags has slowly but inexorably become near all pervasive.The main two political parties are almost falling over themselves in their eagerness to ensure the public know they are determined to deal with the problem of idle scroungers with nothing better to do than sit around and watch daytime tv, paid for by decent, honest, hard working tax payer's money. I started this blog largely to try and combat that myth.

Realistically, just like the vast majority of those receiving health related benefits, if I could go out to work I would, after all I didn't go to university to then decide that being on benefits would bring in a far better living than I could ever earn for myself.

So what does the welfare state give me, or you, should you end up in a similar situation? Trust me, I never thought I would.

I receive Income Support. Income Support, not Incapacity Benefit. Important as they are different benefits worth different sums of money and equally importantly different passported benefits. Different benefits, recorded in different ways with different numbers of people in receipt of them. All those people so resoundingly and publicly decried as workshy scroungers, look to Income Support rather than Incapacity Benefit. Why? Simple really. To receive Incapacity Benefit you have to either have been paying National Insurance contributions, or be aged between 16 and 20 (or under 25 if you were in education or training at least three months immediately before turning 20). That's in addition to meeting the various incapacity thresholds themselves. Income Support however is paid to anyone who can't be available for full time work and who doesn't have enough money to live on, typically lone parents, those sick or disabled (who don't qualify for incapacity benefit or do and are lucky enough to be entitled to income support as a top up), students who are also lone parents or disabled, and those in caring roles. Unlike incapacity benefit, if your partner works on average more than 24 hours a week you won't be entitled to any income support.

In addition to the base rate for an adult over 25 which is approximately £59.15, I also receive various premiums because I am considered to be sick and severely disabled thus approximately doubling the basic rate.

I also receive Disability Living Allowance. High rate for mobility, middle rate for care. Disability Living Allowance (DLA) is tax free and non means tested. This is important because it can, perfectly legitimately be claimed by those meeting the criteria who are also working. Its also important because Incapacity Benefit is taxable and those in receipt of it are liable to pay their council tax, whereas Income Support is not taxed and those in receipt of it receive council tax benefit.

The higher rate of the mobility component can, if the recipient chooses, be used to lease (or hire purchase) a car by way of the Motability scheme. I have over the years realised that there is a widespread public misconception that disabled people receive a car from Motability and then the Mobility allowance in addition to that, perhaps to pay for petrol, taxis, or a powered wheelchair. This is not the case, there is one payment in the form of Mobility allowance which can, if the individual chooses be used to lease a car, or purchase a power chair via Motability. It is not enough money to do both. Many disabled people entirely reliant on benefits like myself opt not to use the Motability scheme. This is for various reasons, but speaking for myself I use the money from my mobility allowance to live on, and almost more importantly I am so frightened of the possibility of losing my Mobility allowance on review that I do not dare use the Motability scheme. If that were to happen, I would doubtless be reawarded High rate mobility upon appeal, but as is all too common, I might have to wait up to a year for that to happen, and I could not afford to do that either financially or practically.

High Rate Mobility Allowance means I am exempt from paying vehicle tax. If I used the Motability scheme this would be automatic, but as I don't I have to apply each year. To qualify for free car tax the car must only be used by or for the disabled person, so a married couple could not use one partner's road tax exemption if the other partner was not exempt and for example used the car to commute. In that example they would have to tax the car fully like anyone else.

I receive the Middle rate Care Component of DLA. It is this (or the high rate mobility component) which entitles me to the severe disability premium which is paid onto my income support. Are you all keeping up at the back? DLA is a completely different benefit to incapacity benefit, it is assessed in much greater detail and only awarded to those who meet very tight criteria. My GP was disgusted when he found out I had not been awarded the High rate Care Component. I wasn't surprised. It is worth approximately £20 more per week in DLA and adds another premium to the income support. In a decision typical of the DWP (sorry faceless) I was awarded Middle rate care for the needs they accepted I had during the daytime, but I did not get High rate care because they did not accept those same needs existed during the night. I wish!

David Freud may think it 'ludicrous' that checks are carried out by the individual's GP, but I rather suspect there are a great many GP's out there who would love to have that kind of ability to help their patients instead of being stuck impotently raging against the system, the only power they have to help being a few lines on a form, or perhaps a supporting letter.

In addition to Income Support and DLA I also receive both Housing Benefit and Council Tax Benefit.

Council Tax benefit first because its easier. In my case I receive the full benefit and so do not have to pay any council tax. This is because I am in receipt of Income Support. Were I to be in receipt of Incapacity Benefit like neighbour was, then I would only have part of my council tax paid and have to pay the rest myself. This was one of the reasons neighbour had to move away.

Housing Benefit. I live in privately rented accommodation. Social, or council housing is in crisis throughout the UK. It's simple, after the right to buy introduced by introduced by the Thatcher government people quite understandably took up that right so moving the vast majority of social housing into the private sector. There has never been adequate planning to ensure that the sold housing stock was replenished for the social housing sector so now we have a chronic and desperate shortage of suitable, affordable housing. Everyone in need goes into the same pile, so that nice little bungalow suggested by Vi (and many others in the real world) that the government could provide to help simply doesn't exist. I could, as was suggested by a social worker, move into sheltered housing, but I neither need nor want to live in sheltered accommodation, and certainly have never been able to see why at the age of 28 to be forced into such an environment was in any way in my interests. Even if the social worker did assure me she would do all she could to have the age restriction removed so I would potentially be able to apply to live with the over 65's. That social worker never did understand my lack of gratitude for her most generous offer.

Housing Benefit is of course set at a level considered appropriate to the local area for an average single person, couple, family etc. As far as I have ever been able to work out this level bears no relationship to the true cost of renting, particularly as it factors social rents into its average, regardless of the availability of such properties. My housing benefit is currently paid at approximately £100 per month below the market rent for my home, which in my experience seems about average. I do live in a nice area, but the cost of rent has risen so sharply that I would seriously struggle to find anywhere at a similar cost. I could also perhaps live in a council high rise and hope the lift worked on a regular basis, or perhaps try to negotiate the nightmare of needing a ground floor property, but being under 65, or 55, not having children, having a pet etc. Having previously fought battles with social services and the local authority over care provision and housing I have long since realised that the only result to that is a steep decline in my physical health, and stress levels I am unable to cope with. It is simply easier and more practical to stay where I am.

There is much talk of replacing Housing Benefit with a Local Housing Allowance. This is currently being trialled in a sample of councils and from what I could find, this is an example of the amounts likely to be paid. LHA has been much hyped as a 'good thing' because those in receipt of it who are in cheaper accommodation are entitled to keep the difference without it affecting their other benefits, and those who 'want' more expensive accommodation will have to make up the difference themselves. On a quick calculation to work out the average 4 weekly allowance provided to those in need of a two room property (ie 2 bedrooms) in St Helens (picked randomly from those running the LHA pilot), the total comes to just over £336. A quick search shows an average 2 bed rental property in that area to be around the £395 mark. Never let it be said that I'm cynical, but it seems fairly apparent to me that LHA is just a way to keep paying housing benefits at well below the market rates for rental properties whilst not addressing the real problem of lack of social housing.

Winter Fuel Allowance. Hahahaha, sorry, I need to go away and laugh some more. Right. This is only paid to the over 60's, and by the look of the budget, despite campaigns from various charities there is no change there. In the budget WFA will rise to £250 for over 60's, £400 for the over 80's. Except. If you are in a couple and receive the much hyped Pension Credit you only receive one allowance between you. Ditto for income based jobseekers allowance.
As anyone in receipt of a state pension is eligible, I can only assume that in households where couples are not in receipt of pension credit because they have too high an income that both people receive a winter fuel allowance in what would be a prime example of the injustice and insanity of the benefits system.

As explained here, disabled people under 60 do not receive a winter fuel allowance because they already get disability benefits and premiums on their Income Support. Except if you happen to be on Incapacity Benefit you aren't eligible for those premiums anyway. Oh, and those benefits are worked out, literally to the penny on how much it (supposedly) costs to live, and the additional costs of disability. So that's Mobility Allowance ruled out because that is 'ring fenced' for transport, so long as you don't need to lease both a car and wheelchair. Things like food that doesn't have to be prepared (social services tend to advise a diet of ready meals), any small equipment that your local authority won't cover the cost of, care costs you may have to pay to the local authority or privately because the local authority are rationing care, and many more things I've not listed. That's before (or after) average monthly heating costs higher than a week's benefit for many people.

Hmm. Here comes my cynical side again, but means testing a winter fuel payment is seen as politically unacceptable. Means testing could perhaps provide for those currently said not to need such payments though.

That's the extent of the help provided (to me anyway) by the state. As I said at the start, I am extremely grateful for everything I receive, but, to quote many of my friends "we're not paying so much tax so you can be refused help".

Social Care. Most councils are now rationing this and three quarters only provide support to those whose needs are classed as 'critical' or substantial'. My needs are classed as 'moderate' therefore in my local authority I am no longer entitled to any support. Having said that some of the support is so appalling people are better off without. Cases like this one happen because of the way private companies are paid by social services departments. In the interests of fairness there are many, many superb carers out there who work difficult, demanding jobs for extremely low wages, kept on temporary contracts despite having worked for the same agency for many years. Its cheaper that way. This calculator is a quick way of assessing what help you might receive in certain situations, it's well worth looking at as you may be surprised (or not if you're a regular reader) just how severely disabled people have to be before they qualify for meagre amounts of help.

Equipment. I've previously addressed this in the form of wheelchair provision, but equipment for the home is assessed for and provided by social services Occupational Therapists (OT) rather than OT's employed by the NHS. My experiences are probably quite typical with social services OT's having told me they wouldn't provide a bath lift as I'm too disabled to use it. This is in case of a fall or injury using the equipment which might lead to the local authority being liable. Seemingly denying care and equipment leading to a fall or injury does not incur liability. I can't work out why.

What this does all illustrate quite clearly is just how complex and difficult to navigate the benefits system really is. This morning, whilst a BBC news presenter was interviewing a representative from one of the disability charities about the latest proposed changes to incapacity benefit I heard him describe some of the current tests as 'not much of a a test really, how hard can it be to walk a few hundred yards' Anyone who reads this blog will know that for many people with all manner of different conditions 'walking a few hundred yards' is as big a battle as running a full marathon, but it shows just how all pervasive this attitude of 'how hard can it be' has become.

If I could give just one piece of advice to those politicians who claim they are so determined to sort out the problems of the benefits system it would be this. Until such time you take advice from the true experts, those with a wide range of disabilities and health conditions living day to day within the benefits system, you will continue to fail. Spectacularly.

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Budget

3/12/2008 03:19:00 pm BenefitScroungingScum 4 Comments

From April 2010, all long-term recipients of incapacity benefit will attend work capacity programmes

Really? I can't find any detail, but really? Not to worry, if it's anything like the existing New Deal farce I've blogged about previously this is no more than a money making scheme for, er, whoever wants to set up as a New Deal company. Now there's a thought. Anyone?

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Cake's Inexplicable Crush meme or My Secret Sex Shame

3/12/2008 02:41:00 pm BenefitScroungingScum 13 Comments

Oh God. Cake, I may never forgive you for this one ;)



I know, I know, I know he's so much older he was finishing university before I was born, he was such a symbol of the previous government's hypocrisy that I danced and cheered at the moment he lost his seat in 1997, and yes, I also know his sexual preferences lie in a somewhat different direction to mine,er my sex even. That's why it's so deeply shameful. I just would. Must be the power thing.

I'm too ashamed to even write his name.


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No special treatment

3/09/2008 07:28:00 pm BenefitScroungingScum 14 Comments

The recent pronouncement from the DWP on the subject of incapacity benefit came from investment banker David Freud who said 'there will be no special treatment for disabled people'.

I suspect the majority of disabled people like myself don't want special treatment as such, just some sort of understanding of how difficult our lives can really be. In light of that, this was an averagely bad day in my life.


I'm tired and sore so last night I made a conscious decision not to set my alarm, but to allow my body to wake as and when it was ready. Although I was in bed well before midnight and was exhausted, pain stopped me sleeping, then I was (as is quite normal) back and forth to the loo until just before 2am. Although it's most commonly known to affect the joints, Ehlers Danlos is a collagen disorder and so potentially affects any part of the body where there is collagen. Which is most of it. In my case that also manifests as having a particularly floppy and lax bladder and bowel.

I was awake again at 4am and 5.30am both times needing to get out of bed and go for a wee, then I slept until 9am when I went to the loo again and took my morning tablets. I was so tired I dozed until forcing myself out of bed around 11. Of course every time I have to get up to go to the loo I sublux and dislocate multiple joints.

11am. I need to go to the loo as soon as I get out of bed. Despite being in so much pain I'm barely able to move, I'm still for some inexplicable reason deeply shamed by getting out of bed so late on a weekday. Perhaps that is because I have taken on board the government's message that I should not be receiving any special treatment.

I tie hair my back and dislocate my shoulder doing so. I can't stand properly as my hips and SI joint are all subluxed and muscle spasms mean I can't relocate them.

I make it downstairs by going backwards on my forearms and feet. Putting the kettle on dislocates both wrists and shoulders. I'm less cavalier about this since tipping a pan of hot water on my hand last week. I cried, but hid that from surrogate mum #1 who happened to be in the house at the time. She was here doing the same tasks social services used to pay for until they said I didn't need any help and I started to pay instead. Anyway, it was running the scald under the cold water that hurt most.

I sit at the computer with my hot drink to read through some blogs. I use a gym ball instead of a chair as strong core stability is vital for those with EDS. Today mine is so poor I can't hold myself upright and keep slumping forwards and falling over. My bladder is irritable and I have to keep getting up to go back and forth to the loo. Every time I put weight on my right side my hip fully dislocates, today my left is playing up and won't go back in. I sort of trail my left leg, foot ending up pointing behind me as I go dangerously putting my weight through my right hip hoping my body will just go with it as I can trust that joint to go in and out of its socket each and every time but have no idea what the left will do. My knees pop out to join the party whenever they feel like it. Shoulders, wrists and elbows are randomly popped in and out of their sockets as I try to use my arms to get up.

I realise that it's one of those days that using the mouse dislocates my shoulder, and the gel mouse mat I've got is putting pressure through my wrist and making my hand numb. It's painful too. Must be resting on a nerve.

12pm I know I have to eat so I try to make some breakfast. A smoothie. Frozen fruit and a bit of juice into the blender. Easy you might think.

I pop both wrists out opening the freezer and trying to get the drawer open. This time fortunately I don't drop it on my feet as that really hurts. I've got severe, secondary Raynauds so handling anything cold is painful. By the time I get the packet of fruit to the blender I can't feel my hands. All the packets were open so no fighting with my spacker scissors today, just pressure on fragile hands to get the blender in the right position. All the while balanced precariously on my step stool to be able to reach. Once the fruit is in the blender I have to hold on the to the counter top and hope for the best as I get off the step. It takes me so long to do things that if I waited until I was finished the food would have started to defrost. The battle with the freezer is repeated. I hang on to the open freezer door to haul myself up and not for the first time wonder about the impact on it being used as a mobility aid. I cannot become overweight, not even by a few pounds. The freezer would not forgive me. Let alone my hips. Back to the blender. I have to get back on to the step stool (I want this pink one, how cool is it!) to be able to hold it and press the buttons. That means forearms flat on the counter top as I lever my weight up on to the step. It's the safest way. Weight through my wrists would mean they'd dislocate and give way, if not wrists then shoulders. Flat forearms give a stronger platform. I lean like that on any given surface at any given opportunity. From behind with my feet at hip width apart, and bendy arched back I look like a porn star waiting to be taken. So I'm told.

I've finally got breakfast. I pop my wrists getting the jug off it's base and again repeat the getting off the step stool performance to get to the sink. The easiest way to clean it is to rinse, then put the jug back on the blender with a little water and washing up liquid in the bottom so that's what I do. The sink is still full of yesterday's dishes I've not had the energy to wash.

Back at the computer I drink my smoothie and realise grudgingly I'm not going to be getting much done today. Trying to keep both upright and my eyes open I decide to go back to bed. I repeat the putting the kettle on performance and whilst it boils I go for a wee. Twice. I manage to make myself a hot water bottle without spilling boiling water on my hands, feet, stomach (don't ask) or any other body part. Then realise I need another wee. Glancing in the bathroom mirror I realise that despite the 24/7 central heating my lips are blue, and on checking, my finger tips aren't far behind.

I drag hotwater bottle, bottle of drinking water, and laptop up the stairs to my room by putting them on the stair ahead of me and climbing up on my forearms and feet. When I'm feeling good I can get up and down the stairs pretty quickly like this but today is a slow, tortuous process where I can feel every joint going in and out of its socket and some where bone is grating on bone.

1.45pm and I'm hungry. Unsurprisingly I need another wee too. Back downstairs backwards on my hands and feet to toast a 'free from' muffin. I go for a wee whilst it's toasting. My hands are sore and dry from having to wash them so frequently. When my toast is done I wait for it to cool a little, then pop my wrist out buttering it.

By the time I get back up the stairs I need another wee. As I do now.

2.15pm Aargh. I've only just dragged myself out of bed for a wee, made it back and laid down and now I need to go again. I wish I could say this was from a bladder infection or similar, but its just the way it is when you have an incredibly floppy bladder which can't fully empty itself.

I end up having to drag myself back and forth to the toilet half a dozen times before I finally fall asleep for an hour at around 4.30pm. No wonder I'm tired.

5.45pm I wake up to a text from Red asking if I want to have dinner with her.

6.30pm I make it downstairs once again on my forearms and feet and run a bath. I can't straighten up properly and am part staggering part shuffling like an old lady. My pelvis feels horribly unstable. Much as I'd love to see Red I know both that I need to take it easy and that having a bath and getting dressed are likely to be more than I can manage. I know Red would happily come here, and bring dinner round, but I don't want to tell her I can't get dressed and I'm embarrassed that the house is such a mess. I text and suggest another day instead.

7.30pm I dislocated my ankle turning round in the bathroom. Not that I've got in the bath yet. I had to wee again. Obviously

8.00pm. Still no bath. Staggering round on an unstable pelvis with both hips out and ankle still dislocated trying to make something to eat.

9.00pm I've managed to make an eat dinner, if you can count frozen oven chips as dinner. If it's any consolation I also had baked beans done in the microwave. With cheese on top. Mmm. Healthy One burn to the hand. Too many dislocations to count.

I'm pouring with sweat again. I don't know if its too warm in here, the heating is on, but very low. If I turn it off, I'll feel the impact in my joints long before I feel cold. It's probably my dodgy autonomic system. Time to flop in front of torchwood.

11.45pm I've been watching the Johnny Kennedy film, The Boy whose skin fell off. Not for the first time, just the first today I think about how incredibly lucky and privileged I really am.

I start the difficult climb up to bed again thinking about that. I never did get in that bath.


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Saturday Afternoon

3/07/2008 06:30:00 pm BenefitScroungingScum 6 Comments

When Ziggy opened the front door earlier both he and his girlfriend commented on the lovely smell in my house. It was Ziggy who had to open the front door as I was incapable of doing anything having walked too far, sent my pain levels through the roof and so having had a drink. Just the one. Some sort of shot that I dropped into my hot chocolate. It did dull the pain levels down a bit, but also rendered me floppily unable to stand up. I had to be half carried, half dragged across the road. The laughing didn't help. Actually the bong I'd had before I left the house to deal with the chocolate death walk probably didn't help so much either.

I fell asleep in front of the film we put on and so forgot to tell them that the source of the nice smell wasn't a scented candle, or any of the house plants. This time it was kitty #2 and the bathroom floor. I was late getting ready to see Red last night and went to clean my teeth. Starting as usual with a good shake to the mouthwash bottle, the kind you have to mix up. I can't open things easily so tend to leave everything part open after getting someone else to break the seal for me.
Cue one exploding bottle of mouthwash all over me, the bathroom and kitty#2. She was, not surprisingly, deeply unimpressed. The bottle top flew off so violently I eventually found it jammed behind one of the small pipes at the bottom of the toilet. It's now a slippery minty fresh ice rink in there. Sigh. And the cat still smells of icy fresh zabactyl. Whatever that is.

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Tagged

3/06/2008 03:14:00 pm BenefitScroungingScum 8 Comments

I've been tagged by both Cake and Grendel, so to complete the set I thought I'd take up Vi's new meme of what's on or above your tv. There isn't anything actually on top of my tv, I've had too many 'home safety' checks from the fire brigade to ever keep anything on the tv, it being one of the things that makes them go wibble, so instead this is what is directly above the tv. I did the painting, so please keep the abusive remarks to a minimum...I can say no more than painting seemed like a fun thing to do on a hot day.




Thank you Cake for this one,

The rules are as follows: 1. Link to the person who tagged you 2. Post the rules on your blog. 3. Share seven random and/or weird facts about yourself on your blog. 4. Tag seven random people at the end of your post, and include links to their blogs. 5. Leave a comment on their blogs so that they know they have been tagged.


1. I love to read and will read anything, labels, instructions, doesn't really matter. Ironically I've found blogging means I'm reading fewer books than ever. I could never go out with someone who doesn't enjoy reading.

2. I was a semi-pro glamour model for a short period of time during my 20's.

3. Although I have travelled to Australia, backpacked round Europe, and been to more than 10 US states I have never been to Scotland or Ireland.

4. I was a real tomboy as a child. I climbed trees, dug holes (lots of holes, why do kids dig holes?) played rugby and football. I had a Sindy doll thing, but its face scared me so I threw it out of a 2rd floor window repeatedly until it smashed.

5. I exist on a diet of red meat, potatoes and variants of. Crisps are a staple food source. As are chips. My love for chocolate is legendary. It is only in the last year or so I have voluntarily started to eat 'green' stuff. Salad is acceptable, some types of fruit, vegetables not usually. Vitamins thankfully come out of tablets.

6. I'm scared of dogs.

7. I steal builders. Plumbers and Electricians too, I'm not fussy. Actually any kind of workman. I'd say person, but they're usually men. Like Cake I smile and talk to anyone. It makes me a complete nutter magnet, but it's taught me the world is full of wonderful people and that people like to help each other out. I always offer a cup of tea to my window cleaner, postie, police man, or anyone who does work in the house, it just got extended to any workmen in the vicinity...well, they speak to me first! I was shocked and surprised to find out how few people do this and how rude some can be to those working in their homes, and though I never expected or wanted anything in return, without exception every person I've done this for has returned to do (for free) some small repairs or improvement that they noticed needed doing to the house.
No, not one has ever behaved inappropriately or made me feel uncomfortable.

Grendel tagged me with the '7 good things in life', so, in no particular order;

1. The feel of warm sunshine on your skin after a long winter.

2. Being a passenger in a car, very late at night, in the rain, drifting in and out of sleep as you are driven home by someone you trust.

3. Watching something you planted as a seed grow and flourish.

4. Cuddling up in the arms of someone you love to watch a dvd in front of a fire on a cold winters afternoon.

5. Good friends. I've not always had this privilege in my life, and now that I do I value my friends immeasureably.

6. The feeling of relief from pain. In my case often provided by cannabis, used as pain killer, a muscle relaxant, for its beneficial effects on my co-ordination and movement. A scheme for its legal use for medical purposes is long overdue.

7. The ability to be both happy and satisfied with who you are and what you have.

The rules say to tag 7 others in return, but as I've got three for people to chose from and I'm not wildly enthusiastic about meme's I'm just going to offer it to anyone who reads and ask them to leave a link back.



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I can has sum mac an cheez?

3/03/2008 09:13:00 pm BenefitScroungingScum 16 Comments


I once got invited to a dinner party where I was so revolted by the food that I just drank. And drank. Then some. Unfortunately it wasn't that kind of dinner party. It was the kind where you really have to behave yourself. I was dating someone maybe 10 years older than myself, and they were his friends. I'm famous for having demanded a cheeseburger in the Savoy (yes, seriously) so when presented with whatever sludgy bean nastiness had been oh so carefully stuffed into some green crap booze was the only option. Packet mac and cheese would have been manna from heaven. It was vile. They were old too. The hosts that is. My youngest sister had gone to school with their son. Don't underestimate the awfulness of it. From what I recall, which truly isn't much, the conversation focused on.... Actually I don't recall at all, I just drank some more.


I don't usually drink alcohol. I'm a horrible lightweight. It does bad things to me.


I could remember being at the table. The next thing I knew I was lying, flat on my back on the living room floor, missing the several hours in between. All conversation is gone from me, except the one, shining snippet of hideousness where I described, in hugely graphic detail to the man of the house what a daisy chain is. I was a hit with him. Somewhat less so with his wife.


I remember begging to be taken away. Literally begging.


Unfortunately, my date listened to my assurances that I was sober enough and took me to a party thrown by some of my friends. I drunkenly mock snogged a female friend. Or three. Fell over alot then I assume went home.

As I only found out about going to the party at all the following day when my date, rather frostily suggested things were over. And that I might like to seek help for my alcohol problem.


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