Catherine’s Story – “When you’re a carer you have a great deal going on in your life. I cannot do without the care”

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Interviewer: Addison

 

Addison:       As this is all about Direct Payment s we’ll start at the very beginning and I’ll ask how you came to find out about Direct Payments?

Catherine:    Through the Carer’s Trust. I don’t think that’s what they were called originally. I think they were called something else, weren’t they? So anyway, Andrew had had a stroke and he was in a wheelchair. We’d started going to the Carer’s Trust group and they’d invited us along to an open day. We were already getting care from the Physical Disabilities Team but the open day was when I really found out about it.

I think that Physical Disabilities Team probably talked about it originally but at the time there was too much going on in our life. So, we’d had the intermediate care and then they arranged for another care company to take over when that ran out. At the time we were moving house and I was trying to get everything sorted out.

Addison:       Okay. So, what about it drew you towards going through the Direct Payment process?

Catherine:    We only have part Direct Payment, so Andrew’s everyday care is taken care of by the Social Services Team. I don’t see any point in giving myself a lot of extra hassle. Plus, he has to have care everyday so if there’s a problem somebody else has to ensure that he has to have further care and I don’t have to take on that problem.

Addison:       How did you find going through the Direct Payment process?

Catherine:    We started in order to allow me to have respite. Actually, getting it in place is a very long-winded process. I got it through Andrew’s care assessment which is supposed to happen every year. I think it probably took 2 months before the money was in place so I couldn’t book any respite until it was in the bank. I wasn’t going to take that risk. The year end has just come about because we should have been assessed in February but that assessment was late so we weren’t assessed until mid-March. We still haven’t had that report from Social Services. We have been told verbally that we will continue to get the support but I still haven’t seen anything in writing.

Addison:       Do you have to chase Social Services up a lot for things like that?

Catherine:    It’s only a once a year thing, so I will chase it, yeah.

Addison:       It’s annoying to have to go through the hassle of chasing people up. Did you feel that you had enough help and support with the process of Direct Payments?

Catherine:    Well it’s fairly simple because I don’t choose the employer. I arrange the care through the company who already provides Andrew’s care from Social Services, so they provide additional care when we need the respite. The financial forms have to be filled in every quarter and they give you an explanation as to how to fill them in and send them back. That might be a problem for some people, depending on what they know about filling in forms. I think it’s simple but other people might not.

Addison:       Potentially there is like organisations like Purple and Penderel´s Trust who will help with things like that should you ever decide you need it.

Catherine:    Yes, but they’re gonna take a cut, aren’t they? If you have to employ somebody else to manage the Direct Payments the money that would be going into care is going to another organisation.

Addison:       You can actually have extra money built in to your Direct Payment to pay for the costs of using an organisation like Purple.

Catherine:    It’s still money being used to pay an outside company and that’s not being used for care no matter which pot it comes out of.

Addison:       Sure. So, do you feel you know where to go for help and support?

Catherine:    No.

Addison:       Would you feel comfortable going to somewhere like Carer’s Trust and asking them?

Catherine:    That would be my first port of call because they are very good and have been a big help so, yeah I would go to them.

Addison:       You mentioned your Direct Payment coming late. Have you had any other problems? How did you go about resolving these problems?

Catherine:    Well it was the first time that we’d had it so all I did was chase the person who came out with the assessment from the Physical Disabilities Team. I rang her up a few times and said, “When’s the money going to go in the bank?”

Addison:       So, a lot of chasing then?

Catherine:    Yeah. We also had problems with the first care company we had and we had them for 3 and a half years. Basically, I think they didn’t treat their staff very well but the carers who actually came to us were very good. It tended to be there were always about six we got to know and the majority were fine.

Addison:       Okay, that’s good. Some people who have been in your position chose to go the Direct Payments route rather than lose the carers from agencies that the County Council use, if the County Council decide to stop using them for whatever reason. Is that something you’d consider if the agency you’re using went off the County Council’s books?

Catherine:    No. The thing is when you’re a carer you have a great deal going on in your life anyway with medications, illness, all the usual sort of things and that’s another headache that somebody else can deal with for you. If you are employing people and then somebody goes off sick you have to try and find somebody to fill in. I cannot do without the care. Depending on how poorly the person is that you care for if you can do without care occasionally, if it’s not vital then that might be a different matter but for me I need that care every day. And, you would hope that Social Services would have more clout with the care agencies because obviously they’re awarding big contracts.

Addison:       I think that’s absolutely fair.  Okay, how easy do you find it to do the things you want to do with Direct Payments, especially the respite care as you mentioned?

Catherine:    It’s reasonable simply because I’m using the same company that provides his care of a morning for the extra calls. That means we then go up to 4 calls a day and that’s easy enough. I think if I didn’t have my family close by then he wouldn’t be able to stay in the house on his own and that would be a completely different picture because I would have to find a care home and that is not easy.

Addison:       Have you had to do that in the past?

 Catherine:    I haven’t but friends have and it’s very difficult to get short term care. That is why I only have Direct Payments for the respite.

Addison:       Okay, sure. So, if your family and friends weren’t able to help you out at short notice would you then postpone the respite?

Catherine:    I’d have to. For instance, when the wheelchair broke down this weekend I was hoping to go away for a week to visit my brother but if the wheelchair wasn’t fixed I couldn’t go. Without me pushing him it’s 4 days where he can’t go anywhere. So, he can’t go to the loo, can’t make a cup of tea, can’t do anything independently. I phoned up wheelchair services on Friday, unfortunately it was a bank holiday weekend. I got an answer machine telling me to phone Bartram’s who do repair. I phoned Bartram’s, not even an answer machine on their phone, just ringing, continual ringing.

Addison:       How frustrating. Okay, so what are some of the benefits of using Direct Payment s that you’ve found?

Catherine:    It means that I’ve got control over it and that I can arrange the care. It’s vital when I’m going away that everything is double checked. It means I can make sure everything’s in place before I go away and paying for the care is easy.

We had to open a separate bank account in my husband’s name which was a bit of a laugh because I deal with all the finances in the house. However, it had to be in his name so we had to get the bank to authorise it so I could be a signatory, which meant that we actually had to go to the bank. It was a long-winded process but once it was set up it was fine. Then once they bill me, I pay them by cheque. Then I completed all the finance forms for the finance department and send them copies of bank statements.

 Addison:       The County Council are bringing in a prepayment card for Direct Payments. Instead of using a separate bank account the money will be loaded onto this card and you’ll be able to use this card the same way as a debit or a credit card to pay for things directly. Will that be beneficial to you do you think?

Catherine:    I guess. It’s just more money being spent on technology that would be better off being spent on care.

Addison:       That’s a perfectly valid point, especially as you’ve already set up a bank account. What advice would you have for other people using Direct Payments?

Catherine:    Keep it as simple as possible but think very, very carefully before going down that route. Obviously, I go to support groups and hearing from friends who’ve got Direct Payments, they’ve had problems with Penderel’s.

Addison:       Sure. Okay, is there anything else you’d like to tell me about Direct Payments?

Catherine:    It works for me because I can keep it very simple but most people with Direct Payments have lots of problems. The last thing you want is to have to add to that. The more and more form filling people do, the more upset they get about it and the more difficult they find everything. Certainly, for the groups I go to, I tend to be a younger person compared to the majority. I had a very responsible job but even for me it’s the fact of, “Oh another lot of paperwork to do when you’re caring for somebody.” If you’re going to push people down that route then you need to give them help when they’re going through the paperwork. That’s the way it can make a difference to the result at the end of the day.