On the Third Day of Christmas, My True Love Gave To Me ... Three Lifelines Cut

I'm 36 years old, married with 2 children and I'm disabled.

Photo: John Rowley/Life.com

I have Herniated Discs, Degenerative Disc Disease, Facet Joint Syndrome and other illnesses that are yet to be diagnosed. I had a second MRI scan this week, following a series of losing consciousness and a constant tingling/loss of feeling in my left arm. I'm on heavy duty pain medication (MST morphine and Oramorph), as well as anti-depressants just to get me through the day.

I am unable to work due to my back problems and also the fact that I am a full-time carer for my disabled son, who will be 3 years old next May. He requires round-the-clock care but ’isn't disabled enough' to get more than 3 hours maximum of respite each week. Or none at all if, like this week, his support worker is ill. He struggles with change and wouldn't like a replacement so it's better that he goes without that care this week.

He goes to nursery for 4 hours a week, 2 separate sessions, but I have to go with him to care for him at both of those sessions. I have to walk with a stick to steady me when I'm out, or use his pushchair for support.

David Cameron with son Ivan.
Photo: Roger Taylor/Rex Features

We are currently in receipt of the highest level of DLA: my son for the care component, and mine is for the mobility component. My son also has issues with mobility but is too young to claim for any help yet. He has to wear specially made shoes, Piedro Boots, which we get for free, on NHS prescription. For now at least.

He has a heart condition (Teratology of Fallot) that was once life threatening before his first round of emergency heart surgery; bilateral glue ear; Pierre Robin sequence and we are awaiting further test results to look at his shoulders and neck. He has a narrowed airway and is fed by NG tube.

We also get Tax Credits. My husband has his own business but doesn't pay himself a wage.

I also get Carers’ Allowance for looking after our son for 24 hours a day, 7 days a week, 52 weeks of the year. I do all of his NG tube changes, order all of our medication, feed sets, liaise with all of the Health Care Professionals that are involved with his care. At the last count we were almost at 30.

I guess what I'm trying to say is that if we lost our DLA or Tax Credit payments, even part of either, we'd be in trouble.

We can only just scrape through after all of the bills are paid.

I can't work. I can't sit for longer than 20 minutes, nor stand for more than a few minutes at a time.

So, what should I be doing?
Sending my son to work with my husband because he's not got a 'proper job' has he? He works for himself, from home. So should I go out and get a full time job, stop claiming for the benefits we are currently entitled to and then there wouldn't be a problem, would there?

Should I just stop caring for him so that he ends up in residential care? That way I can't scrounge off the tax payers: I can't claim benefits for him if I'm not caring for him, can I?

And what should I do about my own claims?
Perhaps I should just load myself up on pain meds and find myself a job. Any job. That way, when The Powers That Be stop my benefits, tell me that I'm not disabled enough to claim any more, send me for medicals that prove nothing at all, make me attend interviews and make me actively seek work....... that way the cuts won't matter to me.

What about the Children's Community Nurse who comes to see my son every two weeks? The SALT who comes every month? What about my Blue Badge? Are the government planning to do more rigorous tests to tell whether or not you actually qualify for it or if in actual fact, I can stagger to the shop which I want to go in, from the arse end of nowhere because there's no parking?

We go to the SureStart Stay and Play session in our village every single Thursday morning. Going there has played a huge role in my son’s development as he is approximately 18 months Globally Developmentally Delayed. He has learned to listen, to sit and to see that there are other children around who he can play with if he wants to.
Not only that, I have made three very close friends just by going there. Life as a parent can be lonely enough when you are on your own or your partner works. Being disabled and a carer as well, I’ve found it hard to get out and meet people, let alone forge friendships.
SureStart has been a life line for me and many of the other mums in the village.
It would be a crying shame to see the service taken away.


If I lose my DLA, Tax Credits and Carers’ Allowance, I will lose my home.


What exactly is it, that this Government wants me to do?


By Mouseface, guest blogger.

More information:

Think tank Demos has produced a report detailing the effects of cuts on real British households with disabilities, including an elderly couple facing eviction from their draughty home. You can download it here

If you still can't quite believe the viciousness of what's to come, read Zoe Williams's strong 7th Dec. article in the Guardian and follow her links..

What can I do?

Nothing seems to be working so far. Please sign Pat's Petition on our Petitions page. Use the Write To Them box (to the right of this page) to email your MP, Lords and MEPs. Please check with charities, unions and local support groups for protest actions you can join.