Caitlin

Brief Outline:

Caitlin has a rare long-term condition called ‘Chronic inflammatory demyelinating polyneuropathy disease’. She has no movement below her neck and needs a tube to help her breathe more easily. She wishes that doctors and nurses didn’t have to ‘tick boxes’ and that patient’s views could be taken into account more often.

Background:

Caitlin lives at home with her parents. Ethnic background / nationality: White British.

More about me...

Caitlin has a rare long term condition called ‘Chronic inflammatory demyelinating polyneuropathy disease’ (CIPD), which affects her movement and breathing. CIPD is a nerve disorder where people gradually have more and more sensory loss and weakness because of loss of reflexes. Caitlin has no movement below her neck now and needs a tube to help her breathe more easily. 

Caitlin recalled visiting the GP when she was much younger. She had some breathing difficulties one day before school – the doctor gave her some oxygen and sent her to hospital. Caitlin was diagnosed with CIPD when she was nine. At that time she noticed that her arms and legs started losing strength and she soon needed to use a wheelchair. Unfortunately, the lack of clarity around her diagnosis when she was younger meant Caitlin tried several different treatments, all of which had no effect. 

Caitlin’s condition means that she sees a consultant if something is ‘really wrong’ and a GP for less serious problems. Caitlin also has daily healthcare from a community nurse or carer. If Caitlin needs to see the GP, her mum phones and makes an appointment and the doctor visits Caitlin at home later that day. She is under the care of one particular GP, who knows her well, and a second one when the main doctor is unavailable. 

Caitlin has a lot of experience of children’s wards as she had to visit one for treatment every month for three years. She has open access to the children’s ward and doesn’t have to go via A&E (Accident and Emergency). Fortunately, Caitlin hadn’t been to hospital for over three years.

At the time of interview, Caitlin was ‘transitioning’ from child to adult services, which she felt a bit nervous about as she didn’t know what to expect. She felt that patients on children’s wards probably got looked after better than they do on adult wards. The final change will happen when she is 18 and she thinks that healthcare through her GP will become more important after that.

Caitlin likes her GP because he just ‘gets on and does it….He gets that people are the better judge of how they feel’ and negotiates with Caitlin about her treatment. Caitlin likes GPs who are ‘actually wanting to be there for you’. She thinks it’s good for GPs to understand ‘the family situation’ and be sensitive to everyone involved in her healthcare. She likes one nurse in particular who she feels ‘cares a lot’, is gentle and patient. 

Caitlin felt that health professionals should listen more to children as they often know what kind of care is best for them. She wishes that doctors and nurses didn’t have to ‘tick boxes’ and that patient’s views could be taken into account more often. Compromise and negotiation is important to Caitlin as well as sensitivity because: ‘It’s about the people as well as the machines’. 

At the time of interview, Caitlin was fundraising for an ‘eye gaze’ system – a tablet computer that she could use with her eyes to control the TV, lights and her mobile phone. She had recently finished her GCSE's and become an ambassador for a charity called ‘Voice of the Child’.

Caitlin’s parents had always known something was wrong. As she got older, her legs started getting weaker. Later she started losing strength in her arms and hands too.

My parents had always known I had something when I was little, so they just thought it was the other thing [cerebral palsy]. But when I was little, when I was about one or something, they noticed that my left heel, I couldn’t put it down. So I had to have botox so that, I think that could straighten it up. And then I actually walked at age two finally, and so then they sort of, they knew. 

And then when we came up here, I was wearing like splints and I was walking. I was all – I could never like run or anything but I could jog sort of and, you know, I could do most things. 

But then probably when I was about nine I started using a wheelchair a little bit, just like if you're going for long distance, cos if we're going shopping or, just you know what I mean more for that sort of thing, just for a rest. And then I started to lose the ability to walk throughout, through about three years it was or so. I then, I was just bound to the wheelchair then. My arms started to lose a bit and then my hands and then I can still sort of move them a bit but barely anything.

It’s important to respect the knowledge patients with complex needs often have about their own health and care.

I'd say for children and my age sort of thing – teenagers, a bit older, I think you’ve really got to listen to the patient. Don’t, you know what I mean, actually listen to them. Let them say what they want to say and actually go from there, and use that because quite often we don’t get like – that’s the thing with the Voice of a Child that we're doing, is we're trying to get children's voices heard. Because, you know everyone, like it's always been a thing that oh adults are superior than children in a way because, you know, I mean they're older, they're more wiser. But actually, I'm sorry but if it's their own health, they know. 

Like, and there's things that I've been through that I think, 'Oh, I think they could have done it this way.' And it would have been a different story basically. I think they, I think any professional in health could learn from someone like me just to be like, 'OK and show me the way you do it,' and then be like, 'OK, what if you did it this way?' And then they'd realise yeah OK whatever.

Caitlin’s a special case. The GP usually visits her in the afternoons if she’s got an appointment. Her mum also has the GP’s email address in case of emergencies.

Can you remember how long he's been your GP?

Caitlin: Has he been my GP since -? Well I don’t know about personally, like yeah he's been a GP since we were up here.

Caitlin’s mother: Probably since nine I would say.

Caitlin: Probably. 

Caitlin’s mother: Since you’ve got the CIDP he's been involved.

Caitlin: Yeah.

And when you need to see him at that point were you going into the surgery, but now would he visit you more at home?

Caitlin: Yeah, he comes here. Every time. 

Caitlin’s mother: On the day that - there's no - they're very good, we can get a home visit within a day, so....

Oh right that’s good. So when you were younger, can you remember going into the surgery itself to see the GP, the local health centre?

Caitlin: Yeah, yeah, yeah. 

And when he comes to the home, he'll come on the day, do you get a time that he's going to come or you only know he's coming on the day?

Caitlin: Well sort of. But we know it’s...

Caitlin’s mother: We know it's early afternoon, so it's when they do their home visits. But we, you know don’t know a precise time.

Caitlin: Which is alright I suppose.

Has that always been alright or would you have liked more of a precise time or how do you feel about that?

Caitlin: I don’t know, I think it's.... the only...

Caitlin’s mother: In a perfect world it would be nice to have a time [laughs].

And the care from the GP, how would you say?

Caitlin’s mother: They're very supportive. I think it is different, you sometimes –

Caitlin: It's been more reasonable.

Caitlin’s mother: Yeah, probably the last couple of years because we've been at home. But they will, like I had a call just as I came about my other daughter actually. But they will happily ring you back, they ring you back within the day. Or they’ll visit within the day, and they don’t - I've even got the email of the doctor sort of thing, so it's...I think it's....but I think we are an individual case.

A GP who’s good with young people with complex needs listens and trusts that they know when something’s wrong. They also understand the family situation.

Caitlin: They [GPs] need to be like caring and that they actually want to help, which hopefully most of them do but you never know. And like I'd say they would – I don’t know like – oh I've gone blank. Ah it's coming, coming - 

That’s okay.

Caitlin: Sorry.

Caitlin’s mum: The thing that Dr [name] does is he listens to what you're saying and -

Caitlin: Yeah, he doesn’t like just go -

Caitlin’s mum: They dismiss her because -

Caitlin: I'm mostly right. In my feeling, like if I say, "Oh, I don’t feel right." But then Mum might look at me, see my sats and stuff, and it's actually alright. But actually I'm not, do you know what I mean. And I actually I'm the best judge of that I think. And he actually gets, he actually accepts that actually I, the people are the better judge so they have to be, you know what I mean....

Caitlin’s mum: Caitlin doesn’t cry wolf, so she doesn’t, she may be saying and then Dr [name] will come out and said, "I can't find anything wrong with you." And then three hours later she starts throwing up, which she couldn’t have known, you know, but Caitlin knows her body very well.

Yeah, so you can tell how you're feeling even if the, even if everything else is at a certain level, you can tell how you're feeling and you can tell him and he listens?

Caitlin: Yes, because like with other, I don’t know if it's just GPs, but other people like nurses or whatever, you just want someone that doesn’t like – say if like you're doing something wrong or something, they don’t just go and say, "No, you can't do that." They’ll either just -they should like make a way round it, like be like, "Oh just be -" I don’t know, willing to negotiate...not negotiate but you know what I mean, just try and like be subtle and just be like, "OK let's do this-" or-

Caitlin’s mum: But you do negotiate with your doctors Caitlin that is, because Caitlin's got such, usually got a very personal relationship with them. So she will negotiate and say, "Look, well this antibiotic..." She's so aware of what medication she has, you know. "This is how I feel, this is what worked in the past." And they will really listen to her.

Caitlin: Yeah I mean, it's the same for GPs, it's good if they do and, just great, a lot of people just – I just like people who are nice. Who actually and they're wanting to be there for you, and that actually – well, one, know their stuff, you know. They need to know what they're doing and not be saying things that aren’t right. And actually I think as well, understand the family situation because it might be that someone might not take something as easily as someone else, do you know what I mean, like news and stuff might not be good for...