Monthly Archives: January 2012

Today – the day I admit defeat

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I have been going around in circles since September trying to get someone to look at my back. Referrals have gone missing or have been sent in only for them to turn round and say they can’t help me because i’m too complex a case and should be seen by a consultant. In the meantime the pain has got worse and worse to the point where I can barely walk. I went for a massage yesterday and she felt that I definitely hae sciatica and possibly a slipped disc.

The problem with a diagnosis of CFS is that whenever you are seen for something they don’t know how to deal with you. I’e fallen asleep in the waiting room after physio before now so it’s fair enough I guess. All the time i’m being told to go back to the CFS serice which is miles away and who have said they can’t help me as I successfully mange my condition.

My manager has been great. I have rung in sick and she’s going to get me an urgent referral to occupational health to see if they can speed things a long.  GP has put in another referral to Harrogate Hospital which I hope won’t take too long. In the meantime i’m up to my eyeballs in painkillers and totally reliant on Adam who is having a tough enough time at work without me adding to the stress.

 

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Fed Up

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Feeling really down tonight. I’m at work, 9 miles from home and my back is agony and my CFS means that I’ve spent most of today in bed and will spend most of tomorrow in bed just so that I can earn enough to get by. I miss my children so much but there are no jobs nearby that I can do. I shouldn’t have to live like this but I know in my heart of hearts that any assessor would mark me as fit to work. The situation is worsened by the fact that the nearest childminder with spaces is over a mile away from my home so my visually impaired husband has to walk miles with them – it’s a lot for a 6 year old and 2 3 year olds to manage. The only saving grace is that I currently get DLA and use it to hire a car but under the PIP rules I will loose this. No car means me giving up my job and having to raise 3 children on my husband’s salary which is simply impossible. I won’t be able to pay for my prescriptions, massages etc which help with pain relief, won’t be able to take my kids to school or to the childminder and I will loose my disabled persons tax credit.

I just want to be able to use my limited energy to look after my children. I don’t want to be off my head on a cocktail of pain killers just so that I can afford to pay my gas and electric bill every month – it simply isn’t right. I would love to manage to work and to cope with family life but it’s not that simple. DLA helped me but now that’s gone what am I meant to do?

The change to PIP is a backward step based on an antiquated medical model of disability made een worse by the fact that it is lead not by need but by some stupid, unproven notion that it will save money.

And now I try to sleep 😦

 

#spartacusstories – My Story – Cared for and Carer

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For the past 5 years I have been claiming DLA. In 2007 after years of suffering, I was finally diagnosed with chronic fatigue syndrome. I get tired easily and have to sleep for at least 2 hours a day, suffer with chronic pain in my hips and lower back, irritable bowel syndrome, chemical sensitivities and depression and I have to constantly monitor my activity levels so that i can deal with day to day life. Sometimes I walk with a stick to reduce the pain in my back and hips and I rely heavily on my adapted car, hired on the Motability scheme, to enable me to work, shop, access my community and to meet my obligations with regards to getting me children too and from school. I’m very worried that I may loose my DLA. If this happens then I will loose my car, my entitlement to disabled persons tax credit and my ability to pay for my own prescriptions. I will no longer be able to afford pay for and maintain equipment and will have to make do with adaptations provided by social services. In short I will no longer be able to manage my condition and the quality of life of my children will be much reduced.

I’ve already suffered from people making assumptions about my conditions. Whilst on incapacity benefit I voluntarily referred myself to Pathways to work. I wanted to work but the nearest offices were miles away and I refused to drive a 20 mile round trip just to read newspapers and to go on computers which I had access to at work. I was referred to the nurse who told me I was being “obstructive” because I wasn’t prepared to do this and because I wasn’t prepared to go to the CFS unit at Seacroft Hospital. The reason I didn’t want to go was because I had been discharged from there as they had said there was nothing more they could do for me! The nurse seemed to think they were now offering some sort of new miracle cure for CFS – my GP refused to refer me when I told her because she knew there was nothing at all that could be done. Now imagine this person had control over my benefits – what a waste of time and resources for a clinic which is already bursting at the seams! Needless to say I put in a complaint and refused to have any more to do with them. I chucked away the CV they had written for me (it was appalling) and managed to get a job myself.

I work as a support worker for 3 ladies who have learning difficulties so i’ve seen how the cuts are going to bite already. Even though they really need more care social services do not have the budget to pay for it and in some cases we are being told that the district nurses should be providing care for our clients because they have a medical need. This is of course ludicrous and again is putting pressure onto the already struggling NHS. My experience here also shows that there needs to be more categories for care – not less as is proposed. I’ve noticed that there are less and less short “sits” which provide a short break for carers so they can go to the shops or attend fitness classes and care managers are saying more and more of the people we support should be left alone. In the words of my manager “someone will die” The system is already cracking and reading about PIPs I increasingly feel that it will only get worse. At the moment if I need something I order it using my DLA. Under PIP I would only get funding for this if someone else decided I need it. Now in the case of my wheelchair I only qualify for a manual chair – even though I can’t push it. I use my DLA to buy second hand scooters which I run into the ground but if I don’t get the money I won’t be able to afford to do this – even though the loss of my car might make it a critical problem.

Surely if there is extra strain on social services it will delay people receiving the support they needs and more people will end up in expensive privately run care homes? Who will benefit from this? Yup, once again it’ll be the bankers and private investment firms. I’ve seen the profits from the Trust I work for and we struggle – there is no way you can run on those margins and make a profit whilst also providing the best levels of care. Remember Winterbourne View and Southern Cross anyone?

We are very lucky. we rent our house from a friend and we will be here for a few years yet all being well paying very little in rent. If we lost this house though we would really struggle. The houses we could afford are miles out of town up the top of a steep hill. I would be housebound if we had to move up there. The council house waiting list in Leeds has more than doubled in recent years so we have very little chance of getting one. My other worry is that come April i could loose my DLA and as my tax credits will be hit by cuts there I will no longer be able to afford to work but of course we won’t qualify for any extra benefits because I will have ‘voluntarily’ left my job! I can’t afford £150 a month in car insurance so I’ll be reliant on other people to take my daughters to school. Me and my husband are both disabled parents who work and DLA pays a huge part in enabling us to ado that. Take it away and we will become reliant on the state.

#Spartacusreport

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I do not choose to have a disability and I do not choose to claim benefits. It’s how I get by and how I live. I had a choice between working and not working – the working option makes me struggle to care for myself, let a lone my children, the not working option I had even less energy and was depressed from trying to fight the system. I went for working against my better judgement. Claiming DLA for me is not a choice, it was a necessity. I need to be able to get around, I need to be able to pay for prescriptions, I need to be able to buy lunch in a cafe when I simply don’t have the energy to do it for myself and I need extra childcare so I can sleep. Now for those who argue that I shouldn’t have children, please remember how much carers save society in the long run. Also remember that my children will be tax payers and will end up contributing far more to society than they take out of it. DLA enables me to work and volunteer so I can give something back to my community. Without it I would be housebound and totally reliant on others.

I get really hacked off when I hear people complaining that people on DLA buy flat screen tellys and go on holidays – I suspect in some cases that’s the case but that it’s a minority. Yes I’ve used my DLA to pay for holidays – I took the girls to Butlins last year as I had no childcare and wouldn’t have coped the full week at home on my own with them. Taking them away meant that they were entertained and I got a break. I’ve also used it to pay for a netbook – when you’re stuck at home all day and the internet is your only means of communication because you’re struggling to string a sentence together verbally it really helps to reduce isolation. I have also used it to pay for massages – they help relieve my pain.

Yes the system needs reforming but the current proposals are based purely on cutting costs which at a time when social services already cut budgets are being squeezed to the max is deeply worrying. Cherry picking information from charities and using that to make a decision which is a life changing one for thousands of the most vulnerable in society is absolutely crazy. I read the Spartacus report with absolute disgust. One thing I am sure about is that cutting the lowest rate care band is going to be catastrophic for people like my husband who has a visual impairment and relies on that money for mobility aids and adaptations to his computing equipment so he can continue working.

Today there is a proposal before the Lords to consider time limiting ESA. If you don’t know this is a benefit paid to sick and disabled people who are unable to work. For 5 years I claimed it’s predecessor – Incapacity benefit. If that had not been available to me we would have had to survive purely on my husbands income and a few quid in tax credits. Now anyone who knew me in that 5 year period will know that I wanted to work, I wanted my CFS to go and I didn’t want to let it beat me. I was depressed, i slept all day every day and couldn’t bath, cook or clean without help. To say that after 12 months I would have recovered sufficiently to go back to work is insanity. We struggled as it was but to take away £90 a week from us would have been disastrous and delayed my recovery further.

I have now go to the point where I’ve gone back to work. CFS still has a huge impact on my life and I am heavily reliant on my motability car to get around. I am unable to walk very far very often as it leads to exhaustion and chronic pain in my back and legs. I have difficulty concentrating and often loose track in the middle of a conversation. I sleep for 2-3 hours a day on a normal day but if I’ve walked to pick my daughter up from school for example or finished a shift at work that will be longer. I take 6 tablets 3 times a day to try and keep the pain under control but these exasperate my irritable bowel syndrome meaning I have to be careful what I eat. I am simply unable to cook and clean because by the time i’ve done the shopping I am too tired to do anything else. I struggle to stand for long periods and to concentrate at the best of times so cooking when I’m tired is dangerous.

In July I was lucky enough to find a job. I’ve always been involved with caring since I was 14 so it was a wrench coming to terms with the fact that CFS hadn’t taken the one job I could do and do well away from me. I decided however to try and find a support worker role. I knew that I could sit and help someone to complete a form, talk them through having a shower or preparing a meal or make a telephone call on their behalf provided that I had the time to sleep the next day and was careful to monitor my activity to ensure I didn’t get too tired. I applied to the Wilf Ward Family Trust, enclosing a letter which honestly explained my situation and the kind of jobs I could do. A week or so later I had an interview and was offered the job. My confidence soared immediately but in December I suffered a relapse which I’m still struggling to cope with. I slept for most of the christmas holiday and have had to stage my return to work so ensure I don’t get sick again.

Unfortunately in April my tax credits will go down, partly because my income from last year will be higher and partly because of cuts to the childcare element. This combined with the real possibility that I could loose my DLA and my car means that I will be unable to continue the job I love. I simply can’t afford car insurance, tax and the cost of fuel on my income. 4 years of desperate job hunting will be totally wasted.

So who do I blame? The people who play the system to try and claim any money they can? No, I blame those who tried to cash in on people’s misery, those who were greedy, those whose mistakes brought the country to it’s knees. Maybe if the likes of Vodafone had of paid taxes, maybe if we hadn’t moved manufacturing and call centre jobs abroad because it was cheaper and maybe if rather than building estates of 4 bed executive boxes we had used our resources to build good quality affordable homes for those who needed them we wouldn’t be in the mess we are currently in. The house next door to me is currently up for rent for over £1k a month – how is any family on average income ever going to be able to afford that and yet for some reason we continue to keep building these things. I blame governments who allow the media to present a stereotype of benefit claimants as scroungers and who listen to what they want to and ignore what they don’t want to.

So if I was in power what would I do? I would cancel HS2 and put that money into renovating empty homes and building affordable housing with realistic rents ensuring that large numbers of apprenticeships were created for young and disabled people. i would provide re-training grants and benefits for disabled people so that they can retrain. I would say enough to the EU and start awarding contracts to British companies and provide grants to service companies who take on young British people. i would make it an offense to use disablist hate speech and I would put in place a minimum income guarantee for working families to ensure they have enough to live on. I would encourage mothers to stay at home to look after their children and to contribute to their community by giving a level of benefit on the grounds that they help out with a toddler group, volunteer at a uniformed or youth group or at a community group. One thing that society has lost by pushing mothers into work is that army of volunteers which underpin our communities. The result of this is mothers who are too tired to care for their children, let a lone help in their community. This has led to a loss of services in our communities – the services which hold us together and teach us tolerance for other people and in my view has led to an increase in antisocial behavior. As the African saying goes – it takes a village to raise a child, such a simple idea but we all need to take responsibility for children and young people in our communities and not always blame parents.

Any policies that come in from now on need to consider the social impacts. We need to fix our broken society but we cannot do this by squeezing benefits when there are no jobs and the cost of living continues to rise. We need to ensure that everyone possible is able to contribute to decision making – at the end of the day MPs we elect you and it is your JOB to speak for us and not to make decisions which could harm us. Already young people have taken to the streets to riot because they felt that no one was listening to what they were saying and they didn’t believe in the political system anymore and increasingly I’ve been involved in protests which have received no media coverage because the media are too scared to speak out when large scale reforms of it are in progress. This simply isn’t right in a proud democratic country like Great Britain. Social mobility is no more – you are stuck where you are or you are going backwards so what’s the point in trying to improve when everything is stacked against you.

In September I will return to university to study Youth Work and Community Development in Bradford and I hope that by the time I qualify government policy will enable people like myself to go out and make a real difference to our communities and will support me as a disabled person to achieve something. I don’t hold out much hope.

To find out more about the Spartacusreport visit http://www.unitedresponse.org.uk/2012/01/the-spartacus-report-the-easy-read-version/