Debbie

Age at interview: 43

Brief Outline:

Debbie is Chantelle's mum. Chantelle is 16 and has chronic juvenile psoriatic arthritis. Debbie provided emotional and physical support to Chantelle when she was struggling with arthritis and bullying. At one point Debbie did not give Chantelle her medication because she was afraid of the side effects. This changed when the doctors said that harmful side effects were rare.

Background:

Debbie is a house wife. She is married and has three children (aged 16, 23 and 25). She is white British.

More about me...

Debbie is Chantelle’s mum. Chantelle is 15 years old and was diagnosed with psoriatic arthritis when she was 11. Debbie took Chantelle to see four different doctors before she was referred to a rheumatologist at a children’s hospital. Doctors suspected that Chantelle had a form of juvenile arthritis but her blood tests did not confirm this. The paediatric rheumatologist conducted extra examinations on Chantelle using ultrasound scans before she diagnosed Chantelle with arthritis.

 

Debbie worried about lots of things when Chantelle was first diagnosed and found this a hard time to cope emotionally. Debbie was very worried about the progression of the arthritis. Debbie’s mother-in-law has rheumatoid arthritis and she was worried that her daughter would have “all of her bones bent up”. Chantelle’s rheumatologist helped calm Debbie’s fears by saying that Chantelle would not end up in a wheelchair. The rheumatologist also said that the medication would delay the need for knee and hip replacements. Debbie was also worried about her daughter’s medication. She was worried because Chantelle was often very sick after her methotrexate injection. She was also concerned about the potential damage to Chantelle’s kidneys if she used the methotrexate for too long. Debbie was happier once Chantelle was taken off methotrexate and put on Enbrel (etanercept).

 

Debbie was also concerned with Chantelle’s emotional wellbeing. Chantelle was becoming increasingly depressed and spent long periods away from school because of the sickness that the medication was causing. When Chantelle was in school she was a victim to physical and verbal bullying which led to her attempting to commit suicide. Debbie and Chantelle used to cry together and get angry at each other during this period. Debbie searched for help from a psychologist but Chantelle did not benefit very much from this. Debbie then paid privately for Chantelle to see a hypnotherapist. Both Chantelle and Debbie sat in these sessions and both of them came out feeling a lot more relaxed and happier.

 

Debbie feels lucky to have had support from the hospital when it has come to securing teaching assistants for Chantelle.

 

Chantelle receives DLA and Attendance Allowance. Somebody at her local hospital helped fill in the forms.

And what about financial support? Do you receive anything?

 

We was told that Chantelle may be entitled to disability living allowance because one that she got deafness in her right ear, two she’s got the Juvenile Arthritis plus the other complaints as well with that she’s got, and they put me, gave me forms and sent them off, and Chantelle does get Motability and Disability Living allowance.

 

Has that been easy to get hold of or has it been difficult?

 

It was difficult at first. It was difficult. But I get the same. I have it already through the diabetes and mine took me three years to get mine. And mine was, my GP in the end, I mean I’ve had mine for years now but my GP in the end went to a disciplinary hearing and told them straight. Put everything on there and says, “There’s the tests.” ‘Cos mine were all electronical tests that proved it, so it showed that I wasn’t faking anything. And he says, “How can you give people that come in here and there and from everywhere and they fake this, they fake that, and they get everything. And this woman’s been denied…” But I got it in the end.

 

But Chantelle’s was a long struggle ‘cos I did try to claim it before for her, even lost when she, ‘cos even though she’s lost her partial hearing, and she couldn’t claim it, I had to make sure she was safe and things like that, and somebody said to claim it, but they wouldn’t give it her. But when she got the Juvenile Arthritis a lady at the hospital showed me how to fill the forms in, what to put, every bit of medication that she had. Difficulties that she had to get dressed and everything, and the help she needed. So we done all that together and they did give it. At first they gave her low rates and it was the lady at the hospital says, “No, that’s not right. They’re just palming you off.” And then writ, she like writ a letter to say that she didn’t think it was right could they look at it again. They looked at it again and they gave her high mobility and middle rate carers. And that, but now she, because of her having to have hands on spasm treatment ‘cos of her back and everything else now she gets high carers allowance as well. She gets everything high. But they have said that when new laws come out or something she may have it taken off her so depending on that.

 

Debbie and her husband help Chantelle get in and out of the bath and with getting dressed. They...

Yeah if she’s in pain with her back there’s a massage technique that the physio showed us what to do for her. So we can lightly massage her back to get that out of pain. There’s if Chantelle needs me to go and get things for her she’s got things like arm braces to sleep in, to keep her hands like in one place so it’s to stop less pain. There’s things like that I can put on for her. If she needs help in the night she’ll just shout, and then I have o go in the bedroom, give her medication, help her to get out of bed if she’s stiff, things like that we’re always there, but I mean I can’t do too much, I mean with her bathing and that I have to bathe her because obviously her Dad can’t do that but I’ve got numbness in my feet and hands through the diabetes and that, so there’s only a certain limit I can do. But like it’s what we normally do, Chantelle, sometimes if she has a bath she can’t get back up, so we have to empty the bath, stick a towel round her, then get her Dad to come in and help lift her up and stuff, because you know it’s her dignity at the end of the day as well, and being a girl it’s a lot different ‘cos I can’t help get her up. And things like that we’ll help with. 

Most days she’s getting better but there are days when she does struggle. It’s like with buttons, she can’t do buttons so, and with me, with my hands and numbness getting things, like sometimes her Dad’ll have to come in. But it’s like, he’s there trying to do a button up for her, because he doesn’t want to look ‘cos he, and it’s you know, so I try my best to get them done up so far as I can and then he’ll finish them off and stuff. And like shoe laces, he’ll tie shoe laces for her and things like that.

 

Is that is that embarrassing or is it something you’ve got used to? How do people feel about it?

 

I think her Dad used to get embarrassed at the beginning because of being a girl and going in the bathroom and lifting her out, even though we stuck a towel round about, ‘cos we’d empty the bath and then put the towel round her, and stuff you know ‘cos he was all, ‘cos we had, I stick clips on them so it doesn’t fall off, ‘cos you know sometimes your towel, so I make sure there’s clips on there. And stuff like that, and it’s like, you know at first I think he was a bit embarrassed ‘cos of it being a girl, but now he’s got used to it and Chantelle just is oblivious to it all to be honest and that like, she’s just a typical child.