Jackie and Gary
Gary self-funded care from age 66
Gary retired at age 56 after a series of strokes caused by a rare syndrome. He received disability allowance which has now changed to Personal Independence Payment (PIP). As Jackie receives her state pension, she is not entitled to Carer’s Allowance.
Jackie, aged 69 and Gary, aged 66 are retired and live in a first floor apartment with steep stairs. They also own a property that they let out to give them additional income. Jackie worked as a qualified clinical hypnotherapist and Gary was a jeweller.
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Jackie and Gary first paid for care when Jackie went away on a long-planned holiday with her sister. They paid for a carer to visit once each day to help with medication and prepare meals. Jackie mostly cares for Gary herself but his condition is progressive and she is thinking ahead to when more care will be needed. As they live in a first floor flat, there are steep stairs down to the garden. Jackie is looking for help to carry out adaptations to the house and garden access. Gary’s abilities fluctuate day to day so Jackie is constantly monitoring his condition to help and support him in his daily activities. Jackie wants a follow-up needs assessment so that they can get the right services for Gary.
Jackie feels that it is not easy to find out about allowances or any help they might be entitled to. Because Gary was only 56 when he had to give up work, he was awarded Disability Living Allowance and they are now in the process of changing to Personal Independence Payment because Gary has reached state pension age. Jackie and Gary also receive a discount on their council tax. They had needs and financial assessments soon after Gary’s diagnosis and they know that they have capital and income well above the threshold so have to pay for their own care. Jackie feels it is unfair when they have worked hard all their lives.
Jackie attends a local carer support group which she has found really helpful. The group told her about Attendance Allowance and council tax discount and has also helped her to apply for support. Jackie has also found help at Citizens Advice, Age UK and the Alzheimer’s Society. She feels it is important to access as much information as you can to ensure you get the support you are entitled to. Jackie and Gary also recommend approaching occupational benevolent societies and guilds. These are charitable organisations associated with your career, for example, Gary received a small grant from the Guild of Jewellers to pay for a short break.
Jackie says she has to ask for an updated assessment when Gary’s abilities change significantly.
Jackie says she has to ask for an updated assessment when Gary’s abilities change significantly.
No, not a need, no, he was assessed for whether he for what level of PIPs he can have, but I suppose any other needs assessment, no. He did have an assessment a few years ago but things have changed; and again I will have to chase that up if I feel that we need it, you know, so if don’t ask don’t get.
Jackie and Gary asked for help from their MP when they had trouble claiming Personal Independence Payment.
Jackie and Gary asked for help from their MP when they had trouble claiming Personal Independence Payment.
Jackie: Well when we were having trouble with the DWP and we were sending them information…
Gary: Oh God.
Jackie: …and they were sort of, they were claiming they didn’t receive it, whatever, he wrote letters for us and but…
Gary: And we went through, we went through a phase where we were sending the information to them but because of one department’s totally separate from a different department, one was saying, well you got the information, the other would say they haven’t, and we ended up having to sit, physically sit in the local Job Centre and do it do emails fax it to one department proving that it got to the other end, because it was getting to the stage where it really was ridiculous. You, in fact you got to that stage in the ridiculous that the MP organised a payment because there was so much going; it took months to sort out, it was absolutely crazy.
Jackie: We got an ex-gratia payment.
Gary: Yeah, yeah.
Jackie: But again, you know…
Gary: It was extreme, it was extreme, yeah.
Jackie: … it’s if you don’t follow it through, if you don’t keep asking then I would say that is the most important thing, just keep asking.
Jackie and Gary told us the different places they got help from.
Jackie and Gary told us the different places they got help from.
Jackie: My advice would be to go to one of the organisations like the Carers Centre, like Age Concern, and they will give support and advice; they have a lot of information, they have a lot of people who are experts and I can’t think of anything else better.
Gary: Well you also, we’ve even, even helped, got help through, through CAB at one time and stuff like that, and sorted out paperwork and bits and pieces, things that we just couldn’t make sense of.
Citizens’ Advice Bureau, yeah they can be helpful there.
Gary: Yeah, so it’s always looking at other avenues.
Jackie: The main, as I say, the main thing is just don’t be on your own.
Gary: Yeah, yeah, definitely.
Jackie: Look for help and advice.