Monthly Archives: January 2011

Why is there such contempt for carers?

Last week, the tragic story of Riven Vincent’s lack of council support in caring for her daughter (read the story here) once again brought the plight of carers to the publics’ attention. The flurry of news stories, and the country-wide outcry, forced the council into acting; having said repeatedly that they couldn’t help Ms Vincent, they are now back to having meetings about what the Vincent family need, with the Prime Minister muttering hurried apologies. Ironic that a party who put such importance on family and marriage would have allowed a family to be torn apart for the sake of a budget…

Perhaps even sadder than the story itself is that by next week, the Vincent family will have been forgotten again, just as carers always are. Yes, they get the occasional pat on the back, maybe an award at a ceremony that is more about celebrities trying to look selfless than it is about supporting the nominees, and parents will be told that what they do for their child is amazing, but it is all lip service. Empty words to people who desperately need more than a piece of plastic or a round of applause.

This was emphasised on Tuesday, when I received Bromley Council‘s proposals for “changes” to disabled services in the borough, based around the introduction of ‘personal budgets’, allowing people to manage their own care needs. Unsurprisingly, the ‘changes’ are riddled with cuts and increased charges to the service users; the Council have proposed introducing charges for day care used by the frail, elderly and specialist service users (eg. dementia patients), which have increased from nil to up to £40 per session, and also propose implementing charges for service users who require ‘Homecare’ at evenings and weekends. Additionally, services users will be, if Bromley have their way, expected to pay for their ‘Carelink’ and other ‘assisted technology’ devices, plus many other forms of help, all out of their limited Direct Payment budgets.

I was granted Direct Payments in late 2008, after being alerted to them by an EB Nurse Specialist. My mother was working part-time (three days a week at Bromley Council, no less), whilst also providing all of my multi-faceted care, health and personal. Bromley Council decided that my needs came under the banner of “exceptional” and allowed me to pay my mum for the personal care she was giving me, as it would be too difficult to find someone else to provide the care to the same standard.

In early 2009, my mum gave up her job and went back to being my full-time carer, not that she ever really stopped; whilst my mum was working, she would get up at 6am, wash, dress, eat her breakfast, measure and administer my medicines and liquid feed via the tube in my stomach, prepare the things I needed to wash, adjust any slipped dressings, help me get dressed and leave with me a drink; during her lunch, she would arrange my prescriptions, equipment deliveries and any hospital/doctor’s appointments; after work (at 6pm), she would make dinner, sort out the washing, then embark upon my four hour dressing change, before measuring and administering my medicines again, and helping me into bed. Whilst she was at work, my grandparents would give me any help I needed. It was a great concern to all of us that Mum was under such a huge amount of pressure (my dad does as much as he can, but changing my dressings etc is hardly practical, and he works full time in manual work), and in March 2009, she took a year’s unpaid leave. After leaving work, I was granted the budget to pay my mum for some of the health care she gives me, and thus she left her Council job permanently.

Now at the age of twenty-four, I am only just being given the ability to hire another carer, in order to give my mum some incredibly well-deserved and desperately needed respite. Not that Mum will agree! Whenever I tell her how much I worry about her, she just says that she loves me and wouldn’t be anywhere else, and anyway, I’d do for it her (which, of course, I would). But that is exactly why and how Councils and the government abuse carers, and exploit the love carers have for the people they are caring for. I know that, despite caring for my faultlessly and with more dedication than any child or adult could wish for, my mum still feels having outside help with my care means that she is letting me down.

Most parents of able-bodied children complain about how draining it is, how they often feel bound by being a parent and have their freedom taken away, but for my mum, she is still is that position even though I, her youngest child, am an adult. I still need help with washing and dressing, I need to be cooked for and sometimes fed, I need to be put into bed (thanks to the copious amount of eye ointment needed to stop my corneas blistering at night), I often need to call her in the night for various reasons, and she still stays in hospital with me, camped out on the floor beside my bed. She is my nurse, my cleaner, my cook, my therapist, my grief counsellor, my personal shopper, my PA, and she is also one of my best friends. But Mum didn’t decline help from the Council throughout my life, she was just never offered it. And if she was, it was quickly withdrawn once the extent of my needs became apparent, as happened with the district nurses, for whom my care was impossible to fit into their already overstretched schedules.

My mum said recently that she doesn’t do her job, caring for me, because she loves it; she doesn’t love seeing me cry during dressing changes, or watching me go through one medical procedure after another, or helping me because my hands won’t function, or engaging in the indignity of helping me clean myself after I’ve been to the loo. She does it because she loves me, plain and simple.

Now Bromley Council tell me that they are proposing to cut the hourly rate paid for care, via Direct Payments, from £14.80 per hour to £11 (both minus tax). The proposal makes me absolutely furious, as it yet another example of how the work of carers is held in contempt. My mother works twenty-four hours a day, more than she is (we’re told) allowed to be paid for according to EU laws, and now they want her to work for even less. The fact is that my mum asks to be paid for caring for me purely to make ends meet. She’s not accumulating a nest egg, or jetting off on expensive holidays, but paying the bills and helping to put food on the table.

The Chief Executive of Bromley Council earns (as of September 2010) £188,785 per year – £46,000 more than the Prime Minister – and yet I doubt he works twenty four hours, is sleep deprived or camps out on hospital floors. Where is the justice?

It is this kind of treatment, and much worse, that leads carers to take drastic measures, whether asking for their child to be taken in to care, or taking theirs and their children’s lives. Every time those stories hit the news we shake our head, say “how terrible”, and hear hollow condolences from politicians, local and national.

Now is the time to tell them that we will no longer accept the debasement of carers and their work. The government is targeting the disabled and their carers because they see us as an easy target. How wrong they are!

This is a call to arms – we must protect our rights to have care, and the rights of those who provide it. Please tell your stories, whether you are the cared for or the carer. We can stop this injustice and degradation, but only if we all work together.

Thank you for reading once again. I’m going to hug my mum, say thank you, and then we will both carry on fighting.

Mel xx

To help support carers, please visit:

Carer Watch

The Broken of Britain

One Month Before Heartbreak

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Superb Supporters!

Since One Month Before Heartbreak posted the link to my blog, early on Sunday morning, I have been astounded by the huge amount of support people have shown. There already existed a great deal of solidarity within the disabled community, but the past two days have shown me that there is a lot of concern in the general public at the injustices being inflicted on disabled people.

Comments on the blog, Twitter and Facebook have all suggested that the government and the right-wing media aren’t hoodwinking people as effectively as they had hoped; our stories are being read, believed without accusations and scepticism, and are resulting in outrage at how disabled people are being treated. That is the way change happens, and that is how battles are won. As Benjamin Franklin rightly said…

“Justice will not be served until those who are unaffected are as outraged as those who are.”

To all of you who have read, commented, shared and supported my story and others, you are helping us on our journey to justice. You are helping those who do not have a voice to still be heard, and to be given the rights they deserve in life.

I cannot express how wonderful your support is, and how much it is appreciated. All I can do is thank you, from the bottom of my heart, and ask if you might continue to stand alongside us. The more voices that call out the same message, the harder it will be for the government to ignore it.

With much love and gratitude,

Mel xx

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Will the ConDems allow the disabled to live?

I like to think that I’m a fairly intelligent person, and yet one thing continues to baffle me; the idea that disabled people enjoy claiming benefits.

I wish I could gather all of those misguided, ignorant, self-righteous creatures together and tell them this – no disabled person would be choose to be disabled and dependent on other people, whether those people are our family, friends, or tax payers.

Yes, some people claim benefits unjustly, but here is a key point: those people are not disabled. Can you see the difference? Those people, who are in the minority, despite what the scaremongering in the media might lead you to believe, choose a life of sponging off of the state, despite the fact that they could work for a living.

Disabled people have no choice but to be disabled.

I desperately want to be able to work. When I listen to my friends discussing their duties in the workplace, their colleagues habits (good and bad), even the irritating person on their train that morning, I feel a pang of envy. They are out earning their livings, they are contributing, paying taxes, they have a sense of purpose and of achievement. When they get their wages each month, they know what they’ve done to earn it. I would love to experience that, to know that I’m a contributing member of society. I don’t need any more “incentives to work” than these. I just need to be able to work.

Instead I am reminded every day that a section of society voices the worst opinions I have of myself: sponger, worthless, a drain on society.

You may be wondering why it is that I don’t work; it’s because I was born with a genetic skin blistering condition called Epidermolysis Bullosa (EB), of which I have the Recessive Dystrophic sub-type. Chances are, you’ve never heard of EB, so I will enlighten you. Due a lack of connective proteins in my skin, the slightest friction or trauma causes it to lift, either in to fluid-filled sacs of blisters, or to detach completely to leave raw wounds. Imagine developing a third degree burn, simply because you turned over in bed, or got dressed, or misjudged your footing. That is the effect of EB.

Having been rampaging around my body for the past twenty-four years, EB has cost me: the sight in my left eye and caused great photosensitivity in the right, the majority of the dexterity in my fingers, my toes (which have fused into a solid mass on each foot), the ability to walk more than a few yards at a time and the ability to swallow (meaning I need a feeding tube in my stomach). On top of this, frequent systemic infections, anaemia, nerve-damage causing restless legs and extreme pain, and the amount of time my wound care takes every day all leave me very tired and lethargic.

EB is unpredictable; I often wake up with corneal abrasions, caused by my eyelid tearing the skin on my eyeball, leaving me blind and intolerant to any light for days. I can suddenly feel very ill due to an infection, or experience a huge amount of pain in a wound and be unable to move. None of these things are conducive to doing a good day’s work. I spend a lot of time at the hospital seeing specialists, and being admitted for surgery and procedures.

Now, tell me. Would you employ me? Would you give me sick pay for all of this time? Would you adapt your office, or supply me with an assistant to act as my hands and feet? Could you afford to pay someone who will be absent so often?

No, of course not. How could you?

But do you understand that this is not my ideal life? That I’m not living the life of Riley on the taxpayer’s (including my parents, sister and extend family) money? It’s worth noting that, whilst the NHS is a crucial part of my life, I have to pay for dressings, treatments and supplies that aren’t covered by the drug tariff.

At home, even though I’m an adult, I am still dependent on my mother, who is my 24-hour a day carer. However much we love each other, however much we laugh together and just get on with it, there is an inherent feeling of humiliation at having to be put to bed, helped into your underwear, even sometimes helped on to the toilet in your twenties. There is also the knowledge that, however much it may be denied, you are a burden to those you love. Even my friends have push my wheelchair, cut up my food and help me get my trousers down on nights out!

You might point out that I’m blogging, that I tweet (yes, Nadine Dorries, I’m admitting it!), that I go out with my friends, that I speak for charity (in order to raise funds to cure EB, which would save tax payers money!), and I don’t deny any of it. But I can only do these things because they are worked around my disability; I have no deadline, and no one is depending on me. If I need to have a sleep half way through writing something, I can. If I need to write spitting in a bowl because I can’t swallow my own saliva, I can. If I need to cancel at the very last minute or leave at a second’s notice, my friends and the charity understand. I could not do those things in the workplace.

When you think about it, it’s strange that benefits are so called. Are they meant to be the benefits of being disabled, the upside to being trapped by your own body? I can assure you, all of us who claim them legitimately would gladly swap for them for a job, for security, for freedom.

Maybe they should be called compensation? No one questions someone being compensated for an injury that keeps them away from work, even if it is caused by an accident. Well, what happened with my genes was an accident, and it caused me injuries that keep me away from work. But disabled people are increasingly begrudged the money they need simply to survive.

I’m really not in the habit of bemoaning my lot. I have a wonderful family and friends, a roof over my head, medical care, and food on the table. But there is a huge amount of injustice in the air right now, and those who will suffer most are those who are not able to fight against it. I have a voice, and I can use it, and so I want to support those who aren’t, for whatever reason, as fortunate as I am.

David Cameron has claimed that “we’re all in this together”, but these cuts won’t affect him in the slightest. He is not relying on friends or family to enable him to live from day to day. He is not facing the prospect of having his care funding cut, and being left to lie in his own urine and faeces all night, because his carer has been replaced with an incontinence pad, nor is he looking at spending every day of his life within a respite home, because the removal of his mobility Disability Living Allowance component has been withdrawn and he can no longer afford an electric wheelchair. He will not be a working person, taking over from the agency carer the local council can longer fund. He won’t feel suicidal because he is being made to feel that he doesn’t deserve to live, or because he simply does not have to means to do so. These are real issues being faced by people with disabilities.

So please, the next time you see a story about the ConDems cuts on benefits in the newspapers and you tut about these disabled people draining the state, please remember three things:

1) Disabled people aren’t spongers, they are people who truly need the money, and desperately wish they didn’t.

2) When you go to bed tonight, you won’t need someone to dress you, or clean your bottom, and you won’t be left to lie in your own defecate. You will be free to do as you please.

3) Not all disabled people are born that way, and many are disabled due to accidents and illness, and you may find yourself in their dependent shoes one day.

On 14th February 2011, the ConDem government will make their final decisions about cuts to Disability Living Allowance, the “benefit” that helps disabled people to fund the expenditure relating directly to their disability, whether care or transport (paying for cabs, an adapted car, or even simply a wheelchair). This decision will impact upon disabled peoples’ ability to have the best quality of life they can possibly have in their various circumstances. If cuts are made, many disabled people will be forced under the poverty line, living lives as second class citizens.

In conjunction with The Broken of Britain, a non-party political action group for people with physical and mental disabilities, and their carers and supporters, One Month Before Heartbreak are giving a voice to those who will be affected by these cuts, and bringing their plight into the public conscious, and hopefully conscience. Please visit their websites to see how you can help us fight for people who might not be able to fight for themselves. You never know, you might need them to fight for you one day, too.

Thank you.


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Welcome to Blogeration! This is where I intend to write about everything I don’t discuss on Missy Magpie, my first blog. While I love clothes, accessories etc, I have a lot more that interests me, a lot more that I’m passionate about, and a lot more I want to talk about!

I hope you enjoy reading this blog (and you might even enjoy the other!), and I look forward to talking to you all.

See you soon,


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