The system has been slowly eroded away to the point where there is no safety net anymore

My name is Lisa Bloor and I’m an unpaid carer. I think it’s important people know what carers like me go through because of a very much broken system.

My daughter was diagnosed with “brittle” asthma when she was three years old and she is now nearly 15. People and assessors often misunderstand the condition and don’t know the difference between “brittle” and “regular” asthma.

For a brittle asthmatic it’s a chronic condition, where every wheeze and cough is potentially life threatening. As parents and carers we know the risk even more so when my daughters friend Kevin sadly died in 2015 age 11 from the same condition.

Katie has to have someone with her around the clock 24/7 ever direct or indirect supervision. Someone needs to be there to help with her medication and call for an ambulance. Even as I write this I’m sat next to my daughter in hospital as she’s on oxygen and nebulisers and just hoping that the medication works and she doesn’t end up in high dependency again or worse still on a ventilator in the ICU.

We struggled for the first couple of years the cost of frequent hospital admissions going to and from the hospital. Appointment after appointment, test after test really did push us to the limit. My partner works but Katie needed and still needs me around to support her so money was beyond tight.

Then one of Katie’s care team said you know you should be able to get financial help. So in 2008 we put in for disability living allowance.

Ok the form was really repetitive but not too hard and easy enough to fill in. We sent it off with medical evidence and it came back awarding her with high rate care and high rate mobility.

To be honest I was really shocked she was awarded the high rates but like her medical team said she couldn’t even get up stairs with out help at that point.

Roll forward to about 2014 and the whole system became a total nightmare. We put in Katie’s renewal although her mobility needs had gotten a little better her care needs was very much the same.

They refused the claim took all her DLA away. She was 10 year old taking 8 different medications a day anywhere from 3 times a day to 24 times a day. In and out of hospital several times a year and had several appointments with respiratory specialists, nurses and Physiotherapists.

So you might ask where is the accumulated impact. Well it’s simple, when someone loses their DLA so their carer loses their allowance.

Does the persons care needs just vanish? No they don’t and carers like me are left in limbo penniless, stressed and beyond breaking point. Not only do we have to care but now we also have to fight for basic financial support of the person with a disability.

When I rang them to ask why they had taken her DLA the women was very off handed saying “Katie could take care of herself”. I said are you for real what am I suppose to do stick her in a corner and say take as many of those tablets as you want she’s only 10 years old and well she’s at it she can ring her own ambulance and don’t forget she can clear get her self to hospital appointments. Katie can barely talk when she can’t breath yet they can say she doesn’t need any help.

The DWP lady then said it doesn’t effect her education. At that point I was crying so upset and frustrated. I asked if she read the evidence as she will find a supportive letter from the head of school clearly stating that Katie struggles to keep up with her education, her average attendance is often 60-75% at best. She often cant go out during playtimes, PE and misses a lot of school because of hospital admissions.

So I had lost my carers was in panic mode, how can I find a job and look after Katie, what will happen if I’m not around to get her help.

If there is no one there, no one to care then that places my daughters life at risk. It also adds further pressure on the NHS as no carer would mean they would need more hospital admissions.

None of it makes sense, they are not saving money by doing the things they are, it’s just putting pressure on other services and unpaid carers.

Needless to say we won the reconsideration after two rounds.

Then in 2017 the letter arrived for the renewal time again. It’s hard to put in words how it makes you feel. The dread and stress starts from the moment that letter arrives.

You would think after the last time they wouldn’t put us through hell again but no the same thing happened again and again she had her DLA removed and again I lost carers allowance.

I rang the carers allowance unit explained that it was with reconsideration but sadly they wouldn’t wait and removed my carers.

We won again and I put in the claim for carers it took them 13 weeks to deal with my claim.

What are carers suppose to do exactly? Live on fresh air. Why are we being pushed to beyond breaking point and left to suffer all to often in silence?

I already know that we have to do all this again next year once Katie turns 16 and are switched to PIP. 

Just the thought of going through the hell again makes me feel sick with dread and stressed out. I know PIP is harder than DLA to get them to understand so I can easy envision having to go to full appeal.

My daughters medical care is staying under paediatrics until she is 19, so you have to wonder if the hospital can still understand the level of support she needs than you would think the disability benefits system would? But I doubt they will sadly.

The system has been slowly eroded away to the point where there is no safety net anymore. You’re made to feel like you are begging and a scrounger or a liar, when all you want to be able to do is care.

But who cares for the carer?  

Lisa

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