Tammy’s Story – “I decided it was the way to go because the care team I have working with me currently are very good.”

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Interviewer: Addison

 

Addison:       Obviously as this is all about Direct Payments, I’ll start off by asking how you heard about Direct Payments? How did you decide that you wanted to pursue Direct Payments and that it was something that was the right course of action for you?

Tammy:         I heard about it through what was my social worker. I decided it was the way to go because the care team I have working with me currently are very good, they’re very experienced. They are very accommodating to my requirements. So, I wanted to stay with them and they wanted to stay with me. The alternative to Direct Payments is to go and live in Romania where they can look after me at their home. That’s what they’ve actually asked me to do. They’re from Romania. I want them to keep looking after me but they said the only way they can only look after me when they eventually go home is for me to move to Romania and I don’t want to do that. It is absolutely beautiful out there but it’s very near Transylvania and I’m not sure I’m ready for vampires. But, I heard about Direct Payments through my social worker.

Addison:       So how did you get your care team that you’ve got at the moment in place? Is that through the social worker as well?

Tammy:         I was in hospital at the beginning of last year and I was given to the company that my carers work for. The care company I had get most of their clientele from people who are released from one of Cambridgeshire’s hospitals. The idea is that they have people available that come and they look after you when you get out of hospital. Then hopefully you’re released to lead your life. However, I’ve got a deteriorating condition, I’ve got primary progressive MS, so I can’t be released back to look after myself. Looking after me is too much for Geoff, my husband. The care company I was with decided to keep me on but I’m coming to the end of the time where they can look after me. The two staff from that care company are willing to continue looking after me because they’ve now left that care company.  So, they’re now working for themselves and they want to continue working with me.

Addison:       I’ve heard that from a few people that I’ve interviewed before. People come to the end of their work with an agency but the person wants to keep their carers on and so Direct Payments are a good way of being able to keep carers on.

Tammy:         Yes, yes it is.

Addison:       So, it was actually your social worker that suggested Direct Payments to you?

Tammy:         Yes. I mean, they’re the people that are the font of all knowledge when you’re suddenly released back into the wild. They should be able to tell you and I think you kind of trust what they tell you. They should know what we can do and what would be available to us, even if we don’t take them on. But, they should know and should be able to help us with what’s available.

Addison:       Okay. How have you found the Direct Payment process?

Tammy:         A bit daunting at the moment in as much as you have to be kind of be audited so that they make sure that you can help contribute to the function of service provision. They also have to make sure that I’m able to understand what it means to have a separate bank account available for Direct Payments. I can employ the services of a company that would do all the payments and arrange the insurance and everything for me.

Addison:       That would be Purple.

Tammy:         Yes. And so, I’ve taken that route because if anything happens, not that I’m expecting anything to happen to me, but you know, if I’m ill or if I’m back in hospital then it means my care workers are looked after and payments are made. It’s not depending on me being in-house.

Addison:       Yeah. I think that a lot of people find the prospect of becoming an employer and everything that means, all the paperwork, the holiday, the sick pay, the pensions, potentially a quite daunting. So, it’s probably good to have organisations like Purple out there that will do that stuff, as an option for people.

Tammy:         Yes, and I like the colour!

Addison:       Ha-ha, yeah, it’s a nice colour. So, how have you found the process of applying for Direct Payments?

Tammy:         I didn’t find it too bad at all really. I mean there’s not much I can do and so people came and checked me over, checked what funds I had. Unfortunately, they also checked Geoff’s bank account to see whether or not the whole income of the household will contribute to the funding of the carers. I don’t think they really should be allowed to do that but they do. That is taken into consideration. That’s a whole different ball game and if you want to interview me on that I will tell you that.

Addison:       This is about anything and everything to do with your experience with Direct Payments, so if you want to tell me your views on that I’d be delighted to hear them.

Tammy:         Well, my thoughts are that Geoff and I are both pensioners. I suppose from a benefits point of view, I’m still able to work because I’m still not of retirement age. However, I’m retired medically because there’s no way I can work. So, I get Employment Support Allowance, which transfers to a state pension in a few years. My income isn’t as much as I would have earnt at work.

Geoff is now a state pensioner. He’s as old as Mondays. He’s in his 60’s and anything that he’s got in his bank account is used to pay for this place. I mean, he’s paid for it anyway and he has to pay or the upkeep it and maintenance of it, etc. He shouldn’t therefore be penalised because he was a very wise man and didn’t waste his money. He has bought his house and he was able to pay for this because I couldn’t live in my house any longer. He’s got to maintain this with no great lumps of money coming in the future. So, they asked him to tell them how much his bank account is worth so that they can say, “Oh, well then you can look after Tammy”, which is not really how it should be.

I contributed to a company pension so that I would have some income when I was a pensioner. That is really kind of a waste of time because having done that, having arranged to make sure I’ve got a pension, so I could do things when I get older, that’s now got to pay for carers. It’s just the way it is. I could understand it if I was a very rich person but I’m not and I’ve paid into National Insurance all my life. I really feel that it’s time that they should look after me.

Addison:       Have you fed that back to your social worker?

Tammy:         Oh yes. They can’t do much about it, it’s not their decision.

Addison:       Yeah Social Services are struggling with funding cuts just like everyone else at the moment. Okay. So, do you feel like you had enough help and support with the application process?

Tammy:         Yes. Purple were very helpful and came to see me. They have given me lots of useful information and they’re absolutely wonderful. It’s one of the reasons I’ve chosen them, because they were so helpful.

Addison:       That’s good to hear. Well maybe you’ve already answered this question but what are some of the problems that you’ve had with Direct Payments and how have you resolved them, if you have you resolved them?

Tammy:         Well I haven’t experienced any problems with Direct Payments yet. It’s only just finally getting set up and I’ve got all the bank accounts and things set into place.

Addison:       I think that’s changing to pre-payment cards soon. So, instead of people having to open new bank accounts they’ll just be given a pre-payment card. People will be able to use their Direct Payment to pay for their service via that card.

Tammy:         That’s okay, as long as that’s acceptable to Purple.

Addison:       Yes, I’m sure the County Council wouldn’t be doing it unless organisations like Purple were on-board with it. Purple work quite closely with the County Council. What about problems with the contributions you are being asked to pay towards your care?

Tammy:         I’m not quite sure at the moment what I’m being asked for. I really can’t say how many hundreds I’m being asked to pay for each week or each month. I’ve got to go through more of my own paperwork. Unfortunately, the problem with moving to a new address is everything’s still a bit in turmoil here so I haven’t got everywhere set up. My wheelchair ability is okay but I can’t scoot about too quickly. That means I can’t always get to all the paperwork that I need to. I’m still trying to locate all the paperwork with regarding to the figures of how much I’ve got to contribute. I may just have to get back to Social Services and say, “Tell me how much you’re giving me so I can tell Purple how much they’ve got.” Then I can tell my carers how much they will get paid for looking after me.

Addison:       And, do you feel comfortable going to your social worker and asking them that?

Tammy:         As long as the social worker is still the same social worker I had at the beginning. Unfortunately with all the cuts in the local authorities, my contacts in the local authority do change every now and then.

 Addison:       I’ve heard that actually. There is quite a lot of high turnover for social worker staff. So, you get people coming in who you’ve never met and who don’t know your case. Then you have to tell them everything from the start.

Tammy:         Yes, that’s it, unfortunately that it. It’s unfortunately the way of the local authorities. I have been saying it would be nice if, when they change jobs or functions, the first thing they did was actually send an email to the people that request it so that you know immediately how to get in contact with them and who they are.

Addison:       Yeah.  Social workers are the first point of contact, so you want to be able to feel comfortable going and chatting to them as and when you need to.

Tammy:         Yes. See, in an ideal world I’d like someone in the council that will look after everything for me. It would be nice to have one single person to go to and they can use their knowledge of everybody else. Then you’ll get somewhere quickly because you’ll get to reach the right people fairly early on rather than way down the line and rather than being constantly transferred to other departments and other people.

Addison:       I understand that there’s a lot of paperwork with Direct Payments. How have you found all the paperwork?

Tammy:         It’s okay. Some of it is overcomplicated I think. By its nature, paperwork by local authorities has to be written so that everybody can understand it but in order to do that they overcomplicate it to make sure that everybody doesn’t understand it. They have to cater for everybody and therefore they overcomplicate the way they write things. In the end you spend a lot of time trying to understand what they’re asking for or what they asking you to specify. We are a litigation society now. It’s very much the American way.

Addison:       Yeah, unfortunately there is always a lot of jargon. I don’t like that myself personally and try to avoid it where I can. So you’re working with Purple to get set up?

Tammy:         Yes, so all the insurance, pensions and the payments will come via Purple. I don’t want to be responsible for putting money in people’s accounts or actually making sure that they get their holiday pay and things like that. I think it would not be conducive to a good relationship with my carers if I was responsible for everything else as an employer. I think they are far more relaxed about things because I don’t want to be in a position where I make the rules. I’d rather the rules were set by Purple.

Addison:       Yeah, I can understand that. So, what are some of the benefits for you for using Direct Payments?

Tammy:         Well, it means I can go with the people I want to go with and they get the benefit of any money that’s paid for looking after me. When they work for a company and the company is paid, then you’ve also got a lot of management and directors who are also being paid out of that very small amount of money. I’d rather the small amount of money was paid to my carers because they’re the ones that do the work. I don’t need the hierarchy in the company to also take their cut. I think it’s easier for Cambridgeshire in as much as they’re getting more for the amount of money they’re willing to pay than if they had to also pay that money towards an organisation like the care company I used when I got out of hospital.

There is also a nice thing about using a company like Purple. Purple are also trying to set up what they lovingly call a dating agency. They had lists of other carers because my care team will take holidays at times.

The benefit of working with a husband and wife team is that they know each other very well so the care is very co-ordinated. I’ve found with the care company I used when I got out of hospital, I’ve had two people that only worked with each other occasionally and then they don’t work as well together. When my team go on holiday or go home to see the kids then I’m going to have to go to Purple’s dating agency to get me a couple of carers to look after me.

Although I’ve got to admit that I haven’t approached him about it yet, but you’ll see a gentleman working around here spraying windows and things with a turquoise top. It’s his own business, he does window cleaning but to supplement his window cleaning, he also works for a care company. You see where I’m going? I’m not talking about window cleaners. He comes here, he knows where this house. So, if I can’t find anybody on the dating agency then I can always talk to him and his contacts in the business about taking up the slack for a couple of weeks a year.

Addison:       It’s good to have a big network like that that you can go to for support. That is good

Tammy:         Yes. It’s nice to have the money to be able to pay the people that you like doing the care as opposed to having to go to a company. I didn’t like going to my original care company because I didn’t know anybody. I found one or two of their people a little intimidating.  Whereas now I’m in a much better position because I’ve got money to pay people to do what I want them to do.

Addison:       Would you feel comfortable interviewing potential carers?

Tammy:         I wouldn’t need to interview the ones that I’ve already got but I would need to have a conversation with those people that I don’t know. I’m used to having interviewed people for jobs so I don’t have any problems with that. It’s making sure that I actually get the right rapport with people because they are doing a very personal job. It’s more than just interviewing to know if they fit to do a job and if they can do a job, I just need to know whether or not I like them. It is such an intrusive relationship that’s the bit that’s more important.

You know, I could forgive a lot of things. There was one of the carers from original care company that was very nice, very friendly and got on with her job very well. However, she kept kissing me on the top of the head. She was absolutely lovely and she did all she had to do but I don’t like being petted. She was a sweetie but I was glad when I knew she wasn’t coming back.

Addison:       Did you feel able to go back to the care company then and say, “I’ve got a problem with one of the carers. I don’t like being petted. Can you tell her to stop it?”

Tammy:         I didn’t go back to the care company because I think she was good at her job. I’d rather have someone than was good at their job than have someone who was not so good. She only came to me for a visit for maybe a week or so, so it wasn’t worth it. I didn’t want to get her into trouble, she was meaning well but it’s just, you know…

Addison:       A lot of people say they have to put up with a few undesirable qualities to get the good carers because when a bad carer does come in it’s such a nightmare having to sort that out. I guess that’s when you want to focus on the issues rather than for some of the smaller stuff but still, I can see it being frustrating.

Tammy:         Yeah. But, my current carers are quite good so there you go. It’s always worth being with a company. I would rather have been able to stay with the care company I was with when I came out of hospital but my carers didn’t want to work for them any longer. In fact, unfortunately they are victims of their own success. They are exceedingly good at their job and lots of people like them but the care company were taking on more and more jobs for more and more people. My pair never stopped working. They didn’t take any time off, they weren’t taking days off, they would work from 8 o’clock in the morning until about ten, eleven, twelve at night. That’s all day, every day, seven days a week. Not sustainable and that’s why they felt the need to move away from the care company.  I don’t know if that was because the care company tried to take on too many people or because they were too greedy. Anyway, it’s why my people didn’t want to stay with the company.

My preference has been to go with the care team I know and then I’ll sort out the problems afterwards. I mean, I can see an end where these two will want to go back home permanently. Then I can look for another care company to look after me.

I know that my carers don’t take time off and they’re never sick. I’m always told well in advance when their holiday time is, because the only time that they would take holidays is to go back to Romania. So, everything’s covered. I know that at Christmas they will be going home for two weeks so I need to find someone to look after me for two weeks over Christmas. That is not always an easy job because it’s Christmas but this is where I’m hoping that Purple’s dating agency will be able to look after me.

Addison:       And if you do struggle with what with finding anybody is there anyone else that you feel you can ask for support?

Tammy:         I haven’t had a problem with that. But, It would be nice over Christmas and things like that, if someone on was on the books and is available. Then I can arrange to have them to come and look at me. I know kind of roughly when it will be. Unfortunately it is Christmas so…

Addison:       Okay, What advice would you have for anybody thinking about using Direct Payments?

Tammy:         I would have thought that if you can work with a company then work with a company because as a company they can cover all avenues when you get anything wrong. If not, then always make sure that you’ve got a plan B and make arrangements for who’s going to be your B team. Don’t wait until the last minute. It’s difficult because you don’t want someone to come in cold; you want to have met them beforehand if possible. But, with companies then you’d hope that they’ve always got the staff to cover everything and if not then don’t employ them.

Addison:       I suppose that’s why it’s worth staying on the books of an agency, just like in case.

Tammy:         Yeah but in my case for the foreseeable future, in order to keep my carers I’ll employ them directly. However, as soon as they want to go home then I will revert back to using a care company.

Addison:       Brilliant. Okay, is there anything else about Direct Payments that you’d like to share with me?

Tammy:         Anyone that’s going down the route of Direct Payments, make sure you keep all your paperwork in order. Build up a nice relationship with the company giving your care because then you’ll get a good team to work with you and hopefully therefore you will get value for the money that you pay them.