Things are looking slightly more hopeful, but it’s still an uphill battle. Last week I got a letter stating that I’ve been approved for “standard care rate” Personal Independence Payment (the disability benefit that’s replacing DLA), but not for “standard mobility rate”. (A little confusing since the additional taxis and practice journey’s I listed are probably the most expensive thing I spend my benefits on, and if transport doesn’t count as mobility I’m not really sure what does). I was relived to find I’d be getting any money at all. I actually jumped out of my chair and did a very embarrassing, very uncoordinated victory dance.

 But after a consultation with my support worker, I found out that being on standard PIP is not enough to qualify me to continue receiving support from Creative Support. I’m scared. Without this additional help my health is likely to go down the drain. But can I really afford to pay an additional £40 a week for it? You could argue that’s what PIP is for. But if I spend all my PIP on support, how will I afford my medication, fiddle toys, practice journeys and all the other survival strategies I listed in my previous article? I was hoping for more independence, but it looks like I won’t have enough money to move out of my Dad’s place until I’m at least 30. The way things are going, I might be stuck here forever.

We’ve asked for the PIP assessment to be reviewed, and my case will go to a hearing soon.- A hearing which I’ve been told I’m not required to attend! I feel I really ought to be there, or at least, someone who knows me well should be there to advocate for me. A group of “professionals” are going to be making a decision that will affect my health and wellbeing for the rest of my life, and they haven’t spoken to me once.  How can anyone be expected to accurately assess the care needs of a person they haven’t met?

 The whole system is screwed. I get it, almost everyone involved is overworked and facing funding cuts left right and centre… I’m sure they’re doing the best they can. But for the benefit of everyone involved, something needs to change. I’m not sure when this mini-series will next be updated, as it could take several weeks to hear about my re assessment, and we’re still figuring out exactly what’s happening with Creative Support. In the meantime, the battle for benefits wages on.



2 thoughts

  1. Them taking away your benefits will compromise your health which means you will “cost” the “system” more money in the long run than if you got all the benefits you require. I hate the short term gain, long term fiasco that seems to be way of the people who make the decisions in these cases. It honestly boggles the mind.


    1. Indeed, I think the problem is it’s too inpersonal, when people don’t meet the patients they’re making decisions for it’s easy to stop seeing them as people and start seeing them purely as a cost, the whole system is just horrible.

      Liked by 1 person

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