We’ve discussed the care cuts a few times over at DWP Reloaded recently. I always knew that a good number would not get the level of support as they had received, because what is allowed under a standard care package – especially in terms of activities and getting out – was cut drastically in the last 5 years. Though the new personal health budgets are seemingly bringing some of that element back according the The Guardian the other day.
It’s good that activities can be funded when you’re seriously ill, but I was about to be fighting for the right to keep warm, have nutritious food, and have clean clothes this week. I can’t go out at present and don’t know when I’ll be able to again, but it’s silly to suggest that they’d arrange activities for me if I’d have no clean clothes to wear, or came home to a cold house.
I’m 52, and I’ve been ill for a long time though, so I’m not bothered about activities, but I think it is especially hard on younger disabled people, who naturally want a social life as well as older people who may still be well enough to lead as full a life as possible for them. To think that they would be mostly stuck in for the rest of their lives is a very sad thing indeed. I know myself that I’m climbing the walls, especially as I can’t even engage in a hobby anymore.
Back to the care plans, I had a horrific time with my supposed care ‘assessment’ on Wednesday. I was having angina attacks every hour and a half in the night, so I just ended up downstairs; it was pointless trying to sleep. I don’t think the stress prior to the appointment – where the ‘assessor’ accused me of not being ill during the 2nd phone call we had – helped my anxiety, and this kept triggering the attacks.
The ‘assessor’ – the one who had asked me for my advocate’s number 3 times in one morning last week – didn’t turn up, claimed that the appointment was actually for the following day (which it wasn’t). Then after the advocate had left, she knocked at the door and said she’d been trying to phone me; I said my mobile hadn’t rang. She said, it was the landline. I told her my file says I’m not to be contacted on as it is left unplugged; I made this very clear during the first phone conversation with her (more unprofessional behaviour). She says that the phone WAS ringing in an argumentative voice, implying that I was lying; I told her that you can unplug a phone, but you would still hear it ring your end if you phoned it. To be honest, it seemed like she was losing the plot! She was way past retirement age too.
I told her I was now too ill to go ahead with the assessment (I had 11 excruciating angina attacks throughout the day and I was very weak), so she would have to rearrange it. She said she needed to speak to me, barged her way into my home, then stood over me, accusing me in a vile manner of not only faking my illness, but not managing the care account properly. She had absolutely no idea about how Direct Payments work; if she was a social worker she would. She stuck me out when I told her how things worked. She was speaking in the most under-educated language that I’ve ever heard from a so called ‘professional. I told her to contact DP, and they would inform her how things work; I said that I was not going to discuss it further, that I was very ill, I told her that I had an emergency appointment at the doctors in the morning.
She then started about that. She said she would be phoning my doctors; again, in the most vile and common language and manner, that I’ve not even heard on the estates considered ‘rough’ in the areas where I’ve worked in the past. I said that she could ring whomever she wanted to, she said ‘oh, I will’. Unbelievably, she then asked for my advocate’s telephone number for the 4th time! Then she tried to make conversation about my cat, and was looking around the room with a horrible expression on her face. I told her she could see herself out.
One of my neighbours told me yesterday, that she went to her car, then went back to stand on the public footpath outside my home (I don’t live on the main road), and she stayed there for ages. Presumably she was seeing whether I had gone running (lol, can hardly walk) to a neighbour afterwards.
I telephoned my daughter and she was totally shocked and appalled. We discussed the fact that she didn’t bring the laptop they use for assessments, only a small see-through file, so she basically gained entry into my home under false pretenses. I said that it may be some vindictive person who has made a complaint, and that I’d had a lot of disability hate incidents in the last 13 years. I immediately telephoned Direct Payments after that, and they told me not to worry about her and couldn’t understand why she didn’t know procedure. Then the surgery, where I was told that even if she had phoned, they would never share my information.
My daughter telephoned me, and told me not to go mad, but that she had made a formal complaint about the matter. The ‘team leader’, said that she had no right to act as she did, that they were there to support me not to make accusations, that they weren’t just there to cut hours, and may actually increase them (I don’t quite believe that one); they apologised profusely, and they’ve taken her off the case. What we want to know is, why exactly she was in my home? Who gave her permission to proceed in such a way?
They’re obviously trying to cut costs as much as they can, and so they’re using ignorant, inept people, who think that they’re ‘qualified’ because they’ve had a little bit of training from fully qualified social workers; trying to be the big ‘I am’ with something to prove (look at me, I can do your job without even any qualifications! Er, no you can’t!). Before she left, she said it might not be her assessing me (oh, no it wouldn’t!), and that social services are going to put her on the duty phones in 2 weeks. I’d hate to think of a desperate family turning to her as their first port of call. I’ve had to phone that line in the past, and it’s always been manned by a duty social worker.
Well they can take a flying jump now. The ball is rolling with the cardiac department, finally, after 6 weeks of severe attacks which I could have died from. Saw my G.P. as an emergency yesterday and she was flabbergasted about it; she said I wasn’t having spasms, and that the hospital should prescribed 3 further medications and done a heart scan immediately at my appointment 2 weeks ago. I’ve been neglected like this for 20 years. I knew that something further was wrong with me a year ago, but I thought they’d just put it down to the ‘un-diagnosed’ condition; you know your own body though and when the massive chest pain started and went into my arm, it was clear to me that it was my heart not some kind of aching muscle. Can’t even sleep if I’m slightly leaning back as well, so I’ve this terrible fatigue on top of the fatigue I already had.
It’s a wonder that we’re all still sane trying to survive in this climate, where your income, your care, your medical needs are something that you have to fight for, just at the point when you can’t fight any more, and that’s what they’re banking on as we’ve discussed previously.
Anyway, my poorly heart goes out to people that have been able to have full lives and now are finding that their world has closed in. The activities for me the majority of the time weren’t always so pleasant because they made me ill; I was told that if I didn’t spend the allowance they would take it from me however. I was relieved when they took the grant away, but that said, I lost a whole group of friends over time. I think I’ve probably deteriorated even more with being stuck in all of the time.
I had 20 years to adjust slowly to my life nonetheless: firstly I had to give up the physical hobbies like bike and horse riding; then the holidays; days out; playing musical instruments; my much missed work (as you can’t teach without demonstrating an instrument); then half days away from home; any evenings; a couple of hours; my writing and PAINting; then hardly seeing my family; hardly seeing a neighbour, that I’m now only occasionally wheeled around to see. But for some of the ILF users, their world is closing in really quickly, and it will cause depression and hopelessness in many.
Eventually, the hours they are granted for going out will only be for a carer to accompany them to any hospital appointments/G.P./dentist etc, most likely on an add-hock basis, fully funded by themselves and not the LAs. And as benefits continue to be slashed, just as we’re seeing now with some disabled people, they won’t have the money to even get to hospital. There will be another humanitarian disaster in the UK to add to all the others; and though we shout it from the rooftops, it may as well be a silent, hidden, pogrom – purely designed to save money: not to save people.