Brooke’s Story – “Sometimes you just want to put it in a drawer and ignore it all.”

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Interviewer: Robby

 

Robby:          So, let’s go back to the beginning and ask how did you hear about Direct Payments and what drew you to them?

Brooke:         I went to the doctor’s because I needed some support and they gave me a phone number. I eventually rang that number when I plucked up enough courage.

Robby:          What did you need the support for?

Brooke:         My partner had used all of his holidays days for when I’m ill and I just needed a bit of help.

Robby:          So, it was your doctor who recommended you?

Brooke:         Yes, he gave me a phone number which and I wasn’t sure what it was actually for but when I rang it they put me through to the Disability Team and a social worker came out to did the assessment.

Robby:          How did you find the process of doing the assessment?

Brooke:         Straightforward. Brilliant. She was on it, on the ball, got it all done, wrote it up.

Robby:          That’s good to hear. Did you feel you had enough help going through the process?

Brooke:         There’s a couple of the forms I was a bit more confused about. I could have done with a bit more support. We got there in the end.

Robby:          Can you go into some details about what support you could’ve used?

Brooke:         Just more help with filling the forms out basically.

Robby:          Okay. So, the social workers didn’t stay and do those with you?

Brooke:         No because they kept coming through the post.

Robby:          But, the social workers were generally good when you spoke to them?

Brooke:         Yes, they’d ring me up and say, “Come on Brooke get this bit sorted,” or, “I’ve done this bit for you.”

Robby:          What about now, if you think you needed some sort of help?

Brooke:         Well, I actually I feel like ringing her because I not heard from Purple since May and we’re now in August. I tried ringing them last Thursday. I asked for the person who deals with me and the lady said, “Oh they’re out with someone.” I said, “Well, I want to speak to someone about what was going on as I’ve not heard from you since May.” She said, “Okay. I’ll pass your number on to some other person and they will ring you tomorrow.” This is last week. Nobody’s rung me. They’re getting paid to do nothing it seems.

Robby:          That sounds very frustrating. Do you mind me asking what you use the Direct Payments for?

Brooke:         I got given Direct Payments to be supported by a PA to help with personal care. Things like dressing and undressing in the mornings. Supported by a PA to help with meal preparation during the day. Getting my daughter to and from school and batch cooking. Getting dressed and washed in the mornings do help me.

Robby:          So, someone to basically come in and help you with that stuff? If you’re not getting the money through from Purple, are they getting the money?

Brooke:         It’s all been released apparently. So, it’s all sat there in an account and is probably building up.

Robby:          What I’m trying to ask is are your PAs getting paid at the moment?

Brooke:         I haven’t got a PA. This is what Purple were supposed to be sorting out for me in May.

Robby:          So, they were trying to find a PA to come in and help you do the stuff you mentioned?

 Brooke:         They was supposed to be writing up an interview that they said would take 6 to 8 weeks. Then I was supposed to have an agency person. The first time they came to see me they told me they’d just changed the company from Penderel’s to Purple. However, they’ve got lots of experience in this, have been doing it so many years, they’ve got so many contacts. They sold it well but when I need someone I haven’t got anyone. We’ve been through the whole process to get this support, the poor social worker’s done all her part, we’ve done all our bit and the company who’s supposed to be helping you, the organisation that’s supposed to be helping you, they’re nowhere to be seen.

Robby:          Do you feel happy going back to Social Services?

Brooke:         Well, that’s what I’m going to have to do since no one has contacted me.

Robby:          Are you in much contact with Social Services at the moment?

Brooke:         No, I don’t think I’ve spoken to her in a while. She did ring me about 6 weeks ago and I said Purple is going to come to see me. They said their going to write a job application thing that’ll take six to eight weeks. The social worker said to me ring to ring her up if they don’t keep in contact. However, I struggle using the phone, I hate answering calls and ringing people.

Robby:          I can be a bit like that myself sometimes. Do you feel that you’ve got the right support for your needs?

Brooke:         No.

Robby:          Are there any other problems that you’ve been having with Direct Payments?

Brooke:         No, just actually using them. Someone at a support group has offered to write me a job description sort of thing and post it through Facebook for me so it’s not under my name. I think I’ll take her up on that offer because that will help.

Robby:          Yes, a few people we’ve spoke to find their PAs through Facebook. Are you okay doing the timesheets and paperwork?

Brooke:         Yes. I did have one PA who lasted for a month. Then one day I had a really bad migraine, so I rang 111 for advice and then they sent an ambulance and I got sent off to hospital. This lady got really nasty with me and told me I’d cost her loads of money and blah blah blah blah. Not like, “Are you okay being sent to hospital?” So, then she decided she didn’t want to work with me anymore. That’s when Purple came out to me.

Robby:          Was she okay before that?

Brooke:         Yeah, she was okay but I could tell something was brewing as if she was waiting for an excuse to get out of it. Why take it on then?

Robby:          Yes, it’s a caring role.

Brooke:         I’ve learnt a lot more about her since. I trusted her and I shouldn’t have.

Robby:          How easy do you find it to do the things that you want to do using Direct Payments?

Brooke:         It’s a struggle. If you have children then you have to function no matter how bad you feel. My daughter goes to pre-school Tuesday, Thursday and Friday so that gives me a few hours to rest.

Robby:          What are some of the benefits of Direct Payments that you found, if you found any?

Brooke:         Well, when the other lady was helping me it was good. She’d come in and do some batch cooking which made it easier to just put in the oven and warm up. I’m not very good with cutting up vegetables and peeling and pans and stuff. So, it did help, that way it really helped. She used to take my daughter to school for me which helped. It did definitely help having the support.

Robby:          So, it was working well and now it’s not working? Now it’s a struggle?

Brooke:         Well I’ve struggled for the last 8 years, I’m used to struggling on. But, when you’ve gone through everything and you’re feeling great because you know you’re going to get some support and then there’s nothing…

Robby:          It’s not exactly a short process.

Brooke:         Yes, there’s lots of complicating forms, signing forms and sending them back. I have received a letter. I am in the process of receiving another personal budget. My social worker sorted it out so I could have a cleaner come in to help while there’s no PA.

They’ve also given some money for childcare support to help with her pre-school fee. So, that really helps because until she turns 3 we have to pay for all of her school fees. That’s a one-off thing I was told, someone from the Carer’s Trust came out said about it. Then the social worker got back to me and said, “We don’t actually pay for school fees but because it’s already been done and what not, this time we will.” The fees are a big chuck of money and what they said we’d get would cover half of it. However, that was all sorted in a while ago and we sent the last bits off the other day but we’ve still not received it yet. It’s nearly there.

Robby:          It sounds like you have a lot to chase up.

 Brooke:         Yeah, especially when you ain’t got the energy to chase after everything else. Sometimes you just want to put it in a drawer and ignore it all.

Robby:          I can imagine that being very tempting. Do you have any advice for other people using Direct Payments?

Brooke:         Try and find your own PA first. Don’t rely on Purple to get you one.

Robby:          A lot of people use people they know already know through their own networks.

Brooke:         That’s the thing, I don’t know many people around here. Where I live is not like being in the city, so we’re a bit more limited on people. If they’re coming from further afield they’ve got to travel here and that might put people off or stop people who don’t drive.

Robby:          Yeah like a lot of people like in the more rural area do struggle. Technically you could go back to the County Council and ask them to arrange care for you.

Brooke:         The problem is that It’ll probably be at set times and I need it at different set times. I need help to get my daughter to school and that’s going to be at half-seven in the morning.

Robby:          Do you feel like you’re managing?

Brooke:         It’s helpful her being at school.  When we did set this up she wasn’t going to pre-school since she was 5 days. These days like on a Monday and Wednesday it’s a lot easier because she will just watch TV and relax a bit more. And, now she’s getting other stimulation she needs a pre-school.

Robby:          Okay, well thank you very much for chatting to me.