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Philip, Mary, and Karen

Brief Outline: Anthony was the only one in his family to be diagnosed with Alport Syndrome. Despite having a full life with Alport Syndrome, the accumulation of work, health-related and personal distress contributed to him developing depression and eventually committing suicide. Philip, Mary, and Karen feel that hospitals need to provide better mental health support.
Background: Philip and Mary are married with three children. Their son, Anthony worked as a joiner. He sadly committed suicide in 2014 at the age of 45. Their daughter, Karen is married with two children, aged 17 and 15. Their son Paul lives in London. Ethnicity: White British.

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Mary and Philip’s son Anthony had haematuria (blood in your urine) as an infant. At the age of 9 he was examined by a nephrologist, who discovered that Anthony was also developing hearing loss, which he suggested was linked to Anthony’s kidney condition. Mary and Philip are not sure whether Anthony was diagnosed with Alport Syndrome specifically at that time because not much was known about the condition then. He was the only one in the family who had the condition. Therefore, his family felt simultaneously guilty and very protective of him.

Karen, Anthony’s sister, remembers how Anthony struggled in school because of his hearing: he was falling behind with his school work, and his classmates sometimes teased him about his hearing aids. The teasing continued into his adult life, when Anthony started to work as a joiner. His physical, male dominated work environment didn’t have structures in place to support people with disabilities, and the Equality Act wasn’t enforced then. Still, Karen believes that all the teasing that Anthony grew up with made him a stronger person in the end.

Anthony’s kidneys started declining when he was 16. He was on CAPD dialysis and received his transplant at the age of 19. Karen remembers Anthony struggling with the renal diet during his dialysis. But, his appetite quickly returned after the operation, so the first place Karen took him to after the hospital discharge was a fast food restaurant to have a burger, something he had been unable to eat for a very long time. 

After the transplant, Anthony’s life normalised to a certain extent. His family feels that Anthony never dwelled on the “enormity of what he’d been through”; rather, “he kind of just got on with it” and never talked about it until much later. He continued with work, got married, and had two children.

Yet, Karen feels that Anthony was always “living his life on the edge” as though he knew he would not live until old age. She thinks that part of it could have been an anxiety about his prospects of getting a second transplant if his kidneys failed again. She recalls how Anthony once told her that even with his transplant he never felt “totally well”, which made her realise the magnitude of living with a chronic disease. There were periods of time when Anthony felt constantly tired as he got older, and the family wonders whether that could have been a side effect of his medication. 

Anthony’s work remained relentless for most of the time, and his family feel that this played a role in Anthony’s fatigue. His employer didn’t take his condition into consideration when they gave him physically taxing work. On the other hand, neither did Anthony want to do less, as a way of proving to himself that he was still capable. Furthermore, as the main provider for his wife and children, he also felt responsible for maintaining his family’s financial stability. 

A crunch point in Anthony’s life came when he developed an Alport Syndrome-related eye problem. The operation, which is usually completed without complications, was unsuccessful. The family feels that the surgeon wasn’t aware that Anthony had Alport Syndrome, which is why the surgery failed. However, when Anthony made a complaint, the doctors brushed him off by telling him that he had known the risks. The possibility of losing his eyesight was a major distress for Anthony and he feared for not being able to drive anymore, and losing his job. 

Just before this, he was also made redundant from his permanent role as a joiner at the Council contractors. The justification was that he took too much time off work; something that would not be allowed now, Karen says. Anthony took his employers to tribunal, but the case dragged on for three years before he received compensation. Throughout, he struggled to earn money, as it was also a time of recession. The lack of work and subsequent lack of routine made him very down. The lack of routine and “lots of time to think” made Anthony’s depression more severe.

He grew increasingly isolated from his friends and family. Unfortunately problems also arose in his marriage, compounding the problems he had already experienced. Anthony committed suicide on 13.02.14.

Philip, Mary, and Karen agree that he was very unwell. They also feel that it was likely the accumulation of all the difficulties together that made Anthony desperate. What they concentrate on now is spending time with his children and making sure they have all the support they need.

His family would like to see more information and better mental health support for people living with Alport Syndrome and their families, to make sure they get the emotional support when they need it particularly at stressful times in life. They also think that support should particularly focus on schools to make sure that children demonstrating early symptoms of Alport Syndrome don’t fall behind in education.

Looking back, Philip, Mary, and Karen believe that Alport Syndrome never stopped Anthony from having a full life: he had lots of happy times and experiences with his friends and family. He went on holidays, out with his friends, and also “had lots of fun times in his life”. His family feel that without the kindness of the family who donated the kidney Anthony may never have experienced the things he did and they are grateful for the time they had with him.
 

Philip, Mary, and Karen think that Anthony’s way of thinking changed after he had a transplant and was on medication.

Philip, Mary, and Karen think that Anthony’s way of thinking changed after he had a transplant and was on medication.

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Mary: At first he took cyclosporine.

Karen: Cyclosporine, wasn't it.

Mary: But then he changed, they changed his prescription onto a different kind. I don't know what he took then.

Karen: They named it, didn't they. The inquest. It was - it was trialling.

Philip: I don't know whether - I don't know whether it did many any difference. But he seemed, after he started taking that medication, he did seem to change.

Karen: That's when things started to change.

Mary: I don't know if it were that, but.

Philip: I don't know whether it were or not.

Karen: I do, I think it was that.

Mary: Well, what he said - because the doctor had told him what it was, with the cyclosporine he were getting really - it makes you really hairy. And he was hairy anyway. But he said this will just have different effects on you.

Karen: Why do you mean, airy?

Mary: Really growing loads of hair, all –

Karen: Oh, hairy - I thought you said airy.

Mary: No, sorry. Hair.

So it's a steroid, was it?

Mary: Yeah.

Yeah.

Mary: There'd be steroid in it, wouldn't there. But I don't think it were that, I think it were just his self, and how he felt.

Karen: I think it - he went on this other drug, and I think that did have an impact on how he was. And he did change after it. Not straight away, but he did.

Philip: He did seem - he did seem to have a different way of thinking.

Mary: Mmm.

Philip: He did seem to dwell on things, and maybe start reading more into things than what there actually was.

Mary: Well I think –

Philip: - and it seemed to compound. I don't know. That's just what –

Mary: I think the way him and [Anthony’s wife’s name] had started, she'd started going to the hospital with him, and then she found out it's these x chromosomes for what his Alports. And I think he found more into his illness than what he had done before. Really. I think so.
 

Karen, Philip and Mary felt things started to get on top of Anthony and he was under a lot of pressure.

Karen, Philip and Mary felt things started to get on top of Anthony and he was under a lot of pressure.

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Mary: But when you've got an illness, that risk factor is greater.

Even more so, yeah. Yeah I think so.

Because again, you get crunch points in your life, like divorce or whatever it is, if you get made redundant - I don't know, whatever, where people need that additional support.

Mary: He wasn't –

Karen: - at work, and everything that was - that were the first thing –

Mary: Yeah. I think everything piling on top of him.

Karen: The tribunal at work was the first thing really that started the whole process of things going downhill.

Mary: Yeah.

Philip: Yeah.

Mary: Yeah.

Karen: Because of all the pressure that he was under.

Philip: Yeah.

Karen: And the worry, that - you know - that he had to keep bringing the money in. And at that time there was a recession anyway, so he was struggling to get work, wasn't he.

Mary: Yeah.

Philip: Well they did, they did - they did tell him, when he went to see the solicitor at the start, the solicitor told him that he'd be better off not going to work. So from then on, he didn't go to work. He stayed on the sick. Now I was with him when he said it, so I know definitely the solicitor told him it. Now the solicitor denied it, at the end. But he did. I mean, I was there when he told him. And that twelve months off work didn't do him any good, did it.

Mary: Because then you've got lots of time to think, haven't you.

Philip: He's thinking, yeah.

Mary: You're thinking about things, and your life, and… didn't he, really.

Karen: He definitely went down. He kind of then at that point, he started really getting –

Mary: Into himself. He didn't bother with people.

Philip: Mmm. Yeah. He, he seemed to dwell on things.

Karen: Yeah, dwell on –

Philip: And like read more into things than what was actually there.

So was he quite depressed then, or?

Mary: Well he must have been, yeah. But we didn't realise that, but he must have been. You couldn't really - and I used to go every day, because I looked after the children, so they could both work.

Philip: Well there are different types of depression.

Karen: Towards the end, when you look back now, when you look at the symptoms of depression –

Philip: Oh, it's obvious now, yeah.

Karen: - he was in a deep, deep depression. Because he actually was - he was having psychotic symptoms. He was imagining things. But we again, we'd never been - I'd never have been in contact with anybody with depression, so I had no idea. My Mum and Dad didn't, we just thought things weren't going right for him, and he was being awkward sometimes, didn't we.

Mary: Yeah. Seeing his symptoms –

Karen: But if you look at the –

Philip: I don't think he was that bad as imagining things, what he was doing is reading more into situations than what was actually there.
 

Karen, Philip and Mary say how they felt with Anthony being the only person in their family with Alport Syndrome.

Karen, Philip and Mary say how they felt with Anthony being the only person in their family with Alport Syndrome.

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Karen: Well you feel guilty, don't you, that you're alright.

Mary: Well you do, but - you do, but –But you try and help them.

Karen: You try and help them, but.

Philip: There's nothing you can do, is there.

Mary: There's nothing you can really do, is there. Well, there wasn't. We didn't know, I didn't know about Alports. But there's nothing you can say, because you're not sick, are you.

Karen: But you do, you are more protective of them.

Philip: Yeah.

Karen: I was really protective of him, and I know Mum and Dad were. Because you know it's just a natural thing to do, isn't it. You over-compensate because you know what they're going through. But he wasn't the type of person that wanted people to feel sorry for him, was he.

Mary: Well not really, no. But I think in the end, he'd -

Karen: But it seemed that everything that kind of could go wrong, went wrong with him.

Mary: Everything, well that's it. 

Karen: But none of us. We were kind of all alright. And it did impact - you know - he was an intelligent lad, wasn't he.

Mary: Oh, yeah.

Philip: Oh, yeah.

Karen: He could have - you know - he could have gone on and done something great. And he did do good things with his life, didn't he.

Mary: Oh, yeah.

Karen: But you do wonder, you know, if he hadn't been deaf would he have done differently at school? Could he have chosen a different, like a different career path.

Mary: I think - yeah. 

Karen: But like I say, his character, because of what he had to go through, did change. And he became a stronger character because of it, didn't he.

Philip: Never stopped him doing anything, you know.

Mary: Yeah. Used to go camping, and take the children camping and things. Yeah. He were quite strong-minded, weren't he, really.

Karen: Yeah, that's what I'm saying. You know, other people may not have done what he did to the extent that he did, but he was that type of character. If he wanted to do something –

Mary: He did it.

Karen: - you could argue with him 'til you were blue in the face but he'd still do it, wouldn't he.

Philip: Mmm.

Mary: Mmm, yeah. So that's a nice thing. And it's nice that we really had him in our life, isn't it. Yeah.

Karen: I remember that time when he went out and got drunk when he were on dialysis, and my Mum had to give him dialysis [laughing].

Mary: And his friends used to come, and it's just nice isn't it, really, that they can do these things.

Karen: But that's just a teenager, isn't it, you know - 17, 18.

Mary: And he never moaned then, did he. He never moaned with his dialysis, really.

Karen: He moaned about the food. I remember him moaning. And we all said "God, I don't know how you're gonna eat some of that" [laughing]. The pasta, and is just looked like –

Mary: What you had to do, you'd to like - you know if you had potatoes, you'd to boil the potassium out of them first, to get rid of it. And so he could eat the stuff. And then it weren't going into his system.

Karen: It'd be easier for somebody now, having to have that kind of diet, because people having different diets is more widespread. 

But then, it was like a rarity, wasn't it.
 

Mary, Philip and Karen say that Anthony’s job was very tiring physically and also that he was bullied by some work colleagues.

Mary, Philip and Karen say that Anthony’s job was very tiring physically and also that he was bullied by some work colleagues.

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Philip: I think a lot to do with it later on, he was doing a manual job, and it was hard work.

Mary: And he found it –

Philip: I know, because I worked with him for a few years. Went working in –

Karen: He said to me, you know, "I just want to come home [name], I just wanna, I just wanna sit and just sit with my kids. And I don't really wanna go out, because I'm tired. Tired."

Philip: It was really tiring. And I think sometimes he tended to be a bit rebellious sometimes, and they would give him harder work then. Especially when he worked for the local authority. They had him putting fences up in the pouring down rain. Digging holes, and - and - which, is –

Karen: His job didn't help his condition really, did it.

Philip: Yeah. He had to, he had to do the job to keep the job. But the people who he worked for didn't take it into consideration, and didn't help.

Mary: No.

Mary: Such physically –

Philip: And the management, especially.

Mary: Yeah.

Yeah, really demanding job.

Mary: Yeah.

Philip: Yeah. Yeah.

Karen: It's about, it's about recognising people have got a disability isn't it, when you -when you're at your workplace. And I don't think the people - the nature of what he did, I don't think the employers did that really.

Mary: No…

Philip: No, no. No. 

Mary: No.

Philip: No, but I mean he did that because obviously he wanted a wage coming in. And he had to keep doing it, to get the money coming in. And especially with a young family, and. But it was definitely the wrong type of job for him.

Karen: But I think the nature of the industry that he worked in anyway, a lot of the employers that he worked for. You know like if he worked for the university, we've got an equality act, we've got to compensate for people that have got disabilities.

Whereas some of the employers he worked for, and he did a lot of agency work, didn't he.

Mary: Yeah.

Philip: Yeah. Yeah.

Karen: He wasn't getting that kind of support. So he had to just fit in with the lads, and then work with them, doing with whatever they were doing.

Philip: Well he'd to do, you'd to do the work whatever - whatever they gave you. This is where I went working with him for a while, and you'd to do what they told you. And they used to give you all the rough jobs anyway. It wasn't a nice job.

Mary: Well I think like you say though, Karen - as you're older, them kind of jobs are just not for you, when you've something wrong with you.

Philip: Definitely the wrong job.

Mary: Definitely…

Mary: Yeah. That's it. A lot of different things were just going wrong with his life.

Philip: And, and I didn't realise when I did go working with him, - don't know if it's relevant to this or not, but - how much stick they did get, when he, when you work there. And there was one lad who, who worked there - there was only about ten people worked there. And he was singing songs about a mute and whatever. You know, this is what goes on. And you start with arguing against it, and then they just make it harder because they give you more jobs and whatever. Like I said, I couldn't put up that, I definitely couldn't put up with that.

Mary: But he didn't really have an option, did he, because he had a family.

Philip: But he had to keep going because of the money, yeah. But I, well I finished, I just left. Well not that I were ever employed there, but I - but I just walked out, I couldn't be doing with it. Wouldn't have done for me.
 

Mary, Phillip and Karen feel it was difficult for Anthony to go back to college, and so advise others to get a good education.

Mary, Phillip and Karen feel it was difficult for Anthony to go back to college, and so advise others to get a good education.

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Karen: Yeah. Think it is, yeah. Because like I say, had he had his time again, he said he would have done things differently.

Mary: Mmm.

Karen: And like I say, he didn't have the choice –

Mary: Well I think we could have –

Karen: - he had to stick with joinery.

Mary: Yeah.

Karen: Because he couldn't really go into any - well, I mean, we did say to him, "You know, go back to college or whatever." But then there's the cost of it, if you've got kids, you've got a family. It's more difficult, isn't it, when you're middle-aged than when you're younger.

It's not easy.

Mary: Yeah. 

Karen: So if you can get a good education –

Mary: I think when we - we should have helped him more –

Phillip: I told him not to go back. But he, he - like it wasn't just as easy, to go back to school, is it, but. But I think they do need encouragement when they're younger.

Mary: Yeah.

Phillip: You know, because obviously they are gonna get a bit behind.

Mary: I wish we'd have encouraged him more.

Phillip: Yeah, but you couldn't have done anything different, really.

Mary: No, I don't say more with it - no. To do more things with him, to help, to get him more help.

Phillip: But I think the help's got to be in the classroom, hasn't it.

Mary: Yeah, I know. But I think if somebody had - we could have helped him more, rather than done - so I'd tell somebody that.

Phillip: Well I don't know how you, I don't know how you could have done that.

Mary: No. Just having extra lessons somewhere.

Karen: You're just giving advice to somebody else now, aren't you. Yeah.

Mary: No, if you were giving advice.

Phillip: Yeah.

Mary: If you could afford to give him extra lessons with somebody, to help him.
 

Mary, Phillip and Karen feel it is important for people with Alport Syndrome to talk about how they’re feeling.

Mary, Phillip and Karen feel it is important for people with Alport Syndrome to talk about how they’re feeling.

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What would you want to see changing, or?

Mary: Just to help –

Phillip: Well I said some information.

Mary: And support.

Phillip: Yeah, the support.

Mary: The support. I think for them young lads. 

Karen: And if they ask for it, make sure there's a quick turnaround time, so people do actually get it. Because for a man to ask for it –

Mary: More so if they say –

Karen: - there must be something there, mustn't there.

Phillip: Yeah.

Mary: I think more so for them young men, isn't it. And girls.

Karen: Yeah.

Mary: If they, they're sick. Like there's something wrong with them.

Karen: Yeah, I don't know whether the later appointments focused on just the physical and not them mental, we don't know. I don't know. 

Mary: It was physical.

Karen: Mmm. They did like all his blood tests didn't they, and stuff like that, when he went back. But you don't know is it focused on the mental side as well as the physical side, yeah.

How he's feeling, yeah.

Mary: Mmm. I don't think he would do.

Karen: Don't know what approach they take.

Mary: I don't think it would be on mental, I think it was more physical, that you were alright in your body.

So you feel that it should be both.

Mary: If the other's alright, yeah.

Karen: I think definitely, yeah. Because one has an impact on the other, doesn't it.

Mary: Mmm.

Absolutely. Yeah.

Karen: And then it's just a way of encouraging people to talk a bit more about how they are feeling.

Mary: Well I think even if you have an illness, you have a bit more down more so, than if you're alright, aren't you. You'll have more down days, I think.

Karen: Mmm.

Mary: And like Karen said, and just being able to talk to anybody. You can ring somebody up and say how, you know - even if you never had it, you could just say how somebody else felt, couldn't you. Really.

You know, I don't think you have to be the brain of Britain, have you. Well, I don't think so, now. Just being there, and being able to talk one to one, and just say what you feel, isn't it.

Mary: And sometimes, if they want to talk to somebody else, it's better than talking to a mother or a father. Isn't it. Mmm. You would, wouldn't you.

Phillip: I think especially people who have the same, same illnesses.

Mary: Same things, yeah.

Phillip: Obviously gonna be beneficial to , to talk to other people, isn't it.
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