Leila

Brief Outline:

Leila is 17. She has a learning disability and needs help with all aspects of personal care. She has markedly painful periods. She can’t take oral medications. Her parents help her with paracetamol suppositories, hot baths, ibuprofen cream on her tummy, and some homeopathic medicine wafers that the GP helped them find. She finds that cuddling her heat up furry penguin helps a lot. She uses period pants mainly for the bleeding and her parents help her with these at home and school staff help her when she is in college. She tried a depo injection once, but she bled every day for 6 months, which made things even harder to manage. Her parents help her manage her periods by counting the number of days it will last for, when it arrives. The pain can make her not able to walk and she doesn’t want to do lots of her usual things. She has been to hospital with pain, and her parents reflected that once the pain was attributed to period pain, then not much was offered or done. She does have mood related changes in the days before her period is going to start. She has had a phone consultation with a specialist, who arranged an ultrasound scan, which was normal with no further follow up after that. She has regular check ups with a community paediatrician, who asks about her periods, but then her parents experience is that after documenting that these are difficult, that not much is offered in terms of advice or interventions. Her parents are creating a patient passport for her, and would like to know about whether there are any things that could be tried to reduce the recurring burden of her periods as time goes by, and are worried about how her periods add to her future care needs.

Leila collapsed on holiday with her period, which was distressing for her and her family.

Dad: And while... you know, I mean you asked about eating earlier on: we give her more time, but when she feels, you know, really sick, she... you know, she... she won’t eat much, she won’t drink much, she—

Mum: And once when we were on holiday once, she literally collapsed.

Dad: Oh, God, yeah, absolutely, yeah.

Mum: She couldn’t walk, she literally just collapsed on the floor. And [father’s name] had to carry her back to the...—

Leila: [fathers name] is home isn’t it?

Mum:—and then she was vomiting.

Dad: Yeah.

Mum: But I had to carry her back. And then she literally slept for a couple of hours. You know, it’s... it’s the pain is so bad that it kind of impacts all of her.

Dad: She does sort of go into shutdown mode.

Mum: Yeah.

Leila: Feeling OK now, thank you.

Dad: OK now.

When Leila is able to go to the toilet and have a poo, this can help with her tummy and period pain.

We want to try and work out how to make them better.

Leila: A poo helps.

Mum: A poo helps, it does. Sometimes when you’ve done a big poo it makes it less painful, doesn’t it?

It does. And actually, sometimes when you’ve got your period it’s harder to do a poo and then it builds up and then it’s better.

Dad: Oh, really?

Mum: I think Leila has that it...—

And do you have the other?

Mum:—and the opposite happens for Leila, yes.

Leila: Opposite.

Mum: Yes.

Yeah.

Mum: Sometimes you do a huge poo, don’t you?

Leila: I did a—

Dad: So, it’s starting, yeah.

Leila:—big sausage.

Big sausage.

Mum: Yes.

Dad: Yeah, good job.

Yeah. And—

Leila: Proud of you.

Dad: Proud of you.

Yeah. And then it’s a little bit better.

Leila: Thank you, thank you.

You’re welcome, welcome.

Mum: I think it’s almost like a reaction.

Mm.

Mum: I think things are sent out almost.

Leila: Yeah, I know.

Mum: And I don’t know quite how that works, but I think it sort of expels everything.

Leila: Thank you, thank... thank... thank you.

Leila finds that cuddling her heat up penguin teddy helps with her period pain.

When you feel sad, when your period hurts, what do you... what does it make you do? What do you want to do?

Leila: Penguin.

Mum: Penguin.—

Dad: That’s a...

Mum: She has a penguin hot water bottle.

Oh. Do you give penguin a cuddle?

Leila: Yeah, I love him.

Do you love him?

Leila: Yeah.

Does it... does it feel nice and hot and cuddly?

Leila: Yeah.

OK. And does that help with the tummy?

Leila: Yes, it does.

Oh is that your penguin? Oh, that’s a really nice penguin.

Leila: Oh, penguin.

That’s a very good penguin.

Leila: Thank you.

So, does penguin give you a cuddle?

Mum: She tucks it inside, don’t you?

Ahh.

Leila: This can help.

Mum: And it does help—

And help.

Mum: —when it’s nice and warm, yeah.

OK. So, you have a cuddle with penguin. Yeah.

Leila: Yeah.

Leila has regular periods. Her parents talk with her about what to expect each month about the length and timing of her period to help her manage her pain and bleeding.

And when they did start, and you had it all kind of a bit, did you... were there any resources? Did you find any resource or informational things that worked for Leila to explain about them, or...?

Mum: No.

Dad: Not really.

Mum: We... we usually work on a... on a this-is-when-it-will-finish basis—

Leila: Basis.

Mum: so that to give her a it-will-finish. She’s always been good at days of the week.

Leila: Thank you, lady. Thank you so, so much. Going to get care.

Mum: Can she look after your penguin?

Yeah, it is a really nice penguin.

Mum: So, we’ve got several.

Dad: But even... even though it’s quite predictable, the start, talking about things happening in the future that haven’t begun, I think once a period’s started, you... we can say it will stop on, Sunday, Tuesday, and she’ll understand that,—

Mum: Yes, and that’s what we do to help her manage it.

Dad: —but if it’s not here, and say “it’s going to come...”

Mum: “It will finish on...”

Dad: Yeah, that gets confusing, I think for her. She struggles with the... I suppose, the anticipation.

Mum: We... we haven’t explained really what periods are, because I think that’s a bit beyond Leila’s comprehension.  She knows that it will come again and it... they come and they go, they come and they go, but if it starts on a Saturday, we usually say “it will finish on Saturday” so that she knows a week... in a week’s time, it will finish.

Leila: going to my room in minute

Mum: And... and-

And during that really long bleed, was that tricky from that perspective?

Mum: Yes.

Dad: Yes, ’cause it was—

Mum: Because we couldn’t tell her it was gonna finish, so... yeah. And... and she would say, “Oh, no, not again,” every morning.—

 “Not again.”

Mum: “Not again.”

“Not again.”

Mum: “Not again.” And that’s how usually when it starts she’ll tell us: “Oh, period again.”

OK. So, for the very long bleed,—

Leila: Oh, tired.

—every day was “oh, no, not again”?

Mum: Yeah.

But each month, it’ll be “period again”?

Mum: Yes, “period again.”

Leila: “Period again.

“Period again.”

Mum: “Period again.”

Leila: Oh, no. Oh, no.

Leila is under a paediatrician and has regular reviews. They ask about periods, but this is not the focus of the appointment. Her family are concerned about the impact of her periods on her and note that periods are not listed on her health passport.

Were periods something that when you see the general paediatrician, was that something that get talked about in...?

Dad: Yes. Well, but... oh, it tends to be not every meeting, yeah.

Mum: But she just asks: “Has she started them?” and we say, “Yes,” and she says, “And how is she with that?”

Leila: [sound]

Mum: You know, “She needs help at every stage and they’re very painful,” and then we moved on to something else like ears.

OK.

Mum: So, it was... it wasn’t very in depth, was it?

Dad: No.

No. Do you feel like they kinda get enough consideration, given the extent of the impact it’s having on—?

Leila: [sound]

Dad: No. And... and obviously, I mean we see with... you know, with... with [sisters name], with her sister, but it’s... it is very different. But I... I think I... my feeling is that the perspective is that it’s not going to be a significant thing; whereas actually for Leila it is.

Mum: It’s a big thing. It is a big thing, and it’s... it... it’s... it affects her ability to engage with everything else, but—

Dad: And it’s... it’s a quarter of her life, you know, it’s... it’s a week that she’s...

Mum: Yes.

Dad: Yeah

Mum: Yeah, and it’s... it’s looking at it stretching out into the future.

When you went and you kinda asked people about how difficult they were and you ended up having the scan, were you able to have any—

Mum: That was over the phone.

That was over the phone.

Mum: That was just over the phone talking to somebody who just said, “Oh, well, I can book you in for a scan just to...” ’cause I said,—

Leila: Scan.

Mum:—“I’m just worried that there’s something wrong, that, you know, is it endometriosis? Has she got polycystic ovaries? Is it... you know, she’s very hairy.

Leila: Hairy all over, thank you.

Mum: You know, is... is there... are there other things going on?” And they said, “Well, you... we can have a... you can have a scan.” We went in, had the scan, and they basically rang back a couple of weeks later and said, “No, shows it normal.”

And then it kinda that was—

Mum: And that was it.

And would it have been helpful to have followed up?

Mum: They didn’t even meet her, the... the consultant didn’t even see her in person and it was just a phone call.

Dad: And we took one that we’d made [patient passport], and they sort of said, “Ooh, you can get one,” but when you go on the [placename] website, there’s not just one template for a patient passport because I’m... I’m quite good at the tech. There are lots and lots of different one and it...—

Leila: And me.

Dad: —and they tried to work out the one that’s the right one, and then we... we found really the one that we think that is on their own website, of the various options, it’s the best one, but then how do we attach that to her records? There’s... there’s no pathway. There’s no sort of central information and there’s no kind of ‘this is how you do it’, and it’s... that is a little bit—

Mum: We gave our copy to the paediatrician and made her photocopy it.

Dad: Yeah.

Yeah.

Mum: Yes, and it’s just like ‘this is what we want’.

Dad: No.

Was that a kinda general one about Leila health in general, or was that a specific one about managing per...? I mean I guess I—

Mum: No, not... and it wasn’t about manag—

Dad: No, it wasn’t.

Is there a patient... there isn’t a patient passport about periods?

Mum: No.

Dad: But... but we will put it on there, but it’s... I mean although it’s a concern, I mean obviously our concerns around that are huge ’cause it’s like eating, but, you know, if she goes in... into hospital and they bring her just a menu, I mean, you know, she can’t...—

Leila: I do, and... and... and I love penguin.

Dad: —she can’t eat any food by herself. Everything has to be cut up and she needs to be supported and have tiny little bits and it’s... it is... it is worrying.

Mum: Yeah, there are lots of aspects to her care that she won’t be independent with at 18, and won’t suddenly magically...

And is that accounted for or you’re trying to navigate how you—?

Dad: Well, we... you know, you’ve got to… at the mom—

Mum: No, we want to kind of... we kind of want to put it up and put it out there—

Dad: Yeah, and nobody seems to be able to...

Mum: —that if there were an issue, we... we want to kind of have it on her records, and everything, before there’s an issue.

Leila has debilitating period pain as well as sometimes having difficulties with constipation. Her family worry about trying medications for period pain that risk making this worse.

Mum: But once... once we took... when I took her to hospital, and we were worried that it was a... you know, a constipation issue. We weren’t sure if it was period or if it was constipation and we kind of wanted someone to tell us, really.

Leila: We doing

Mum: And the thing he prescribed, or was going to prescribe, was something that can cause... He said, “Now, you have to be careful with this that I’m going to prescribe, it can cause constipation.” And I thought, ‘oh, my God, are you not listening?’

Leila: Oh, my God, ra-ra-ra-ra-ra-ra-ra-ra-ra.

Mum: And it... And I know it’s, you know, all the different comorbidities are hard to, you know, not exacerbate one problem while you’re fixing another one. But I just thought, ‘oh, man, you’re really not understanding.’ And it can be frustrating; it can be really frustrating.

Yeah.

Leila: And they did it so well. Thank you so much.

Leila can’t take oral medicines, which limits the available options for pain relief. Her parents wish that healthcare professionals would listen to their knowledge of this and that there were more options for people like Leila with learning difficulties.

Dad: And... and obviously can’t take things orally,—

Can’t take orally.

Dad: —so it’s... got limited options.—

And the... and the suppository forms, you’ve tried the paracetamol,—

Dad: Yeah.

—which does... the botty pill helps.

Dad: Yeah, botty pill does help, yeah.

Mum: But paracetamol does—

But paracetamol and Nurofen upset the stomach.

Mum: Yes, something weird. We’ve... I’ve tried giving it to her orally mashed up in things, Nurofen, and that gives her a terrible tummy.—

Leila: Yes, yes.

Can you take syrups if it was like Calpol or...?

Mum: No.

Dad: No,—

No, no, no medicine, no.

Dad: —ooh, no, no, it comes straight...

[overtalking]

Dad: Stand well clear, yes.

Mum: And we have told them that in hospital, and they take no notice, give it to her anyway, and then end up with it on their shoes.

Dad: Yeah.

Mum: Yes.

You can but try.

[chuckles]

Mum: Like I say.

We all need to learn the lesson about listening sometimes.

Dad: Yes, listen to the parents, yes.

Mum: Yes, yeah, “don’t try that, no, please... oh, dear.”

OK. Yeah. I think—

Mum: And they’re like: “Oh, no, I can squirt it down the side of her mouth,” and you go: “I really wouldn’t.”

But that there... there are lots of aspects of treatment, and not just periods, but treatment that I think... just like when she haemorrhaged that they... they said, “Oh, she’s got to gargle with this,” I said, “Leila never gargled with anything.” “No, but she mustn’t swallow it,” I said, “Well then, don’t give it to her,—

Dad: No, don’t give it to her.

Mum: —you need to think of a different tre...” And I think that applies to periods that, OK, we can’t take oral painkillers.—

Leila: We don’t need pills, do we?

Mum: We need a different thing. And I think that’s... that’s one of the things that’s really difficult for people with learning disabilities because the ordinary standard treat... you know, [sisters name] might take an ibuprofen for a pain, but that doesn’t work for Leila. But we need more alternative.

Leila needs constant support when she has her period. This can impact on whether she can go to school, where her parents can work, and on the whole family’s activities.

Mum: In that, the... the... the level of support that she needs when she has the pain is completely undivided – you can’t leave the room – so it’s completely undivided support. I do work, and it’s... it’s tricky because obviously for a couple of days a month, she needs somebody in the room with... When it’s bad, she needs somebody in the room with her,—

Dad: Yeah, to calm her... and... yeah.

Mum: —stroking—

Leila: It’s all right, yeah.

Mum: —and, you know, administering paracetamol suppositories and keeping the penguin warm and, you know, making sure that she’s having plenty to drink,—

Leila: I know, with you.

Mum: —and those sorts of things.

So, it has quite a big impact on all of you.

Mum: It does, yes, yeah. And obviously she needs you to change the pads and the pants, and all that kind of thing, but for certainly several hours this morning,—

Dad: I know, you can’t... yeah.

Mum: —and you... you can’t be separated from her.

Leila: over in a minute.

Dad: And I... I tend to get up and go very early with [name] and normally Leila not awake, so that can be really tricky for [Mum] because I’ve got up and gone and I’m at school before... before Leila wakes up. And then poor [Mum’s] up here—

Mum: And if she’s woken up with a period and I’m supposed to be elsewhere in a meeting, so it’s like: “I’m really sorry, I can’t come today,” and-

Dad: Yeah, that’s really hard, yeah.

Leila: It’s all right, and—

Mum: And, you know, she does miss some college because of it.

And do they... they... —

Mum: They... they are absolutely fine, they... they don’t—

And what about your work?

Dad: Well—

Mum: Yeah, I’m lucky that I can often work from home.  It’s tricky if it’s... You know, sometimes I’m supposed to be halfway round... round [place name], but...

Mum: Yeah, it’s... it’s... it’s difficult. It... it kind of impacts... her periods impact all of us. So it... it’s... you know, in an evening when I’m supposed to be going to watch them in a show, or something, I can’t take her, so I can’t go either,—

Leila: I’m not in it.

Mum: —so it makes that sort of thing...

Dad: And I’m out, had a long day, a long day…