Table 11.
Quotes relating to the impact of AHP
| Quote (identifier) by area of impact |
|---|
| Ability to work |
| “[For] 18 months I didn’t work at all…I was a sick person at home on benefits.” (Patient A) |
| “I can’t study when I’m having an attack. I can’t even feed myself, let alone go to the [university] or do the work or read.” (Patient H) |
| “[I] used to do quite a physical job. [Now] I can’t do retail; I wouldn’t be able to stand for that long really. I wouldn’t be able to do an eight-hour shift…I wouldn’t be able to lift up something heavy at all. 1) Because it hurts and 2) I’m just generally not that strong. So, I do an office job, so I sit behind a computer and take calls and do admin stuff for the council.” (Patient C) |
| Financial impact |
| “I completely lost my financial independence.” (Patient E) |
| “I can’t pay my bills.” (Patient C) |
| “[I] had to sell the house. Spend my savings.” (Patient G) |
| Ability to socialize |
| “It doesn’t do anything for your social opinion of yourself…I am quite proud to be a nurse in social situations and I am a nurse and I work full time and I pay tax. You know I am an upstanding citizen, when you’re on benefits in social situations it can be embarrassing.” (Patient A) |
| “It does mean that whenever the pain hits, I have to drop everything I do. Cancel all my plans, no matter what they are; cancel weddings, cancel holidays, everything basically…” (Patient E) |
| “Before porphyria came and reared up…[I] had a normal life. Had a job, had a social life, then porphyria came along, I can’t work anymore, I’m classed as disabled. And I can’t go out and socialise as much as I could do, so it’s changed my life, it’s turned my world upside down.” (Patient J) |
| Impact on relationships |
| “More [of] a doctor and a nurse than I am a husband…” (Caregiver B) |
| “I’ve not had a partner since being ill. But being ill is probably a reason why I’ve not got a partner…You’re this sick person who is on benefits, doesn’t have any money, doesn’t have any prospects, you don’t feel very attractive.” (Patient A) |
| Ability to carry out personal and household tasks |
| “If I’ve just come out of hospital and I can’t walk and I’m on crutches or I’m in a wheelchair, then obviously, getting in and out of a bath to have a shower or to just make myself a dinner or make myself a cup of tea isn’t easy because my house isn’t adapted for that. […] eventually when things get worse and I won’t be able to recover, then obviously my house, my flat will have to be adapted.” (Patient C) |
| “[I] buy food, make dinner, kind of what I describe as the household chores, right. And [wife] might spend an entire day on the sofa. Not because, she doesn’t [want to] help me, but because she’s in too much pain or is just too fatigue[d].” (Caregiver C) |
| Impact on psychological wellbeing |
| “I suffer with hallucinations, confusion, I don’t really know what’s going on, I don’t really know where I am, I’m not safe to be alone.” (Patient C) |
| “I’m only 27 but I feel like I’m 50 something […] sometimes I’ve told my mum before, I don’t even want to be here anymore. But I think like that when I’m in a crisis more. When I’m not, when I’m okay, I feel okay, but it’s just hard to live with. I said to my mum that I think if I didn’t have the children, I don’t think I could, I would live like this, with putting up with the treatment and everything else that [is] involved.” (Patient H) |