PB: She was a lovely caring girl, if me or her Dad were poorly she'd look after us, she was very helpful, liked to help around the house and put shopping away. She liked podding peas and generally like to help. She liked doing jigsaws and games, she'd always hide on piece.

PB: If you played pair games she'd always win, because she knew how to hide a piece. She loved every body, there wasn't a bad bone in her body. She lit up a room when she went in it, when Laura died that light in our life went out.

PB: For 21 years we looked after her 24/7, when she died part of us died with her.

C: Just explain to me a little bit, I know in your statement you described the way in which you were able to communicate with Laura and how important that was.

C: You felt she could give decisions and views on things. Can you explain that a little

PB: We'd give her two course, if you pick A we'd do this, pick B we'd do that. She knew what she wanted to do.

PB: She used to make her own decisions about her clothes, where she'd like to go shopping or go out. We always involved her in decisions about holidays, we'd put destination in a hat, if she picked it out we'd discuss did she want to go there.

PB: She could say yes, she'd nod her head for no. If she didn't want to do something she'd blow raspberries or shake her hands, no if she didn't want to do it. Laura could make her own decisions.

Coroner asks how they decided on food

PB explains they made menus, and Laura would pick out what she wanted to eat.

PB: That was it, we joined Laura in everything, she made her own decisions.

C: OK, if we go back to when Laura was born, during your pregnancy were you aware Laura had what we now know was Partial Trisomy 13?

PB: No, we were told she could have problems, we were probably told she were Down Syndrome.

PB: We said through that pregnancy we'd have no tests done, whatever this baby was going to be we were going to have her.

It took us 10 years to have Laura, she was out little miracle. We lost 3 babies along the way, 2 rounds of IVF, when Laura was born we'd got the world.

PB: When we had Laura we were satisfied, we had everything, we'd got the world.

C: When did it become apparent to you Laura had a number of conditions?

PB: She went to @SheffChildrens for blood tests and they told us she had Partial Trisomy 13

C: What did you understand that meant?

PB: Well she had learning disabilities, they did say she'd have difficulties, they did say if she developed anything medical they'd treat it as and when it arised.

C: How did Laura generally cope? You've described Mr Booth could get Laura to do most things, including in hospital, but how did Laura cope with intervention needed?

PB: She just coped, she always coped with a smile on her face, she always did it with a smile on her face

PB: she always did it with a smile on her face. Kenneth would sit her on his knee and explain what was going to happen. If it was an operation we'd explain the day before and ask if it was OK with Laura, if she was ok with it we'd go ahead...

PB: if she wasn't we'd have to talk to doctors because we wouldn't go against what Laura wanted.

C asks about Laura's diet, Patricia explains how they wrote to supermarkets to find out what was suitable to her intolerances. Sainsburys Free From was good for Laura.

C asks how came about knew she had Chron's disease; Patricia explains she developed diarrhea and was tested

When first diagnosed she went on just E208 for 16wks, to give her bowel rest

C: How did she cope with not being able to eat normal foods on that 16wk diet

PB: She was brilliant, we felt guilty because we were eating food and Laura couldn't, she didn't bother because she knew that was doing her tummy good. We said its not fair eating in front of you but she was fine with it.

C: Once she was able to eat, albeit on special diet, how long did she continue with E028?

PB: It was eventually stopped in Sept 2015 by Professor Lobo. Laura left Children's on 6 bottles, they reduced it down to 3 and weaned it off to 1 and then in 2015 it stopped altogether

C: I can see the photographs behind you of Laura, can you describe her physical stature to me please

PB: She was small, very petite, didn't grow like a normal adult would

C: You've talked about her coming to the freezer with you, were there limitations to her physically?

PB: Laura couldn't walk so she shuffled on her bottom, that's how she'd get around the house. She couldn't walk, she was in a wheelchair.

C asks about their role as parents in Laura's care in children's hospital

PB: We were involved in all of it, doctors would come and tell us what would happen and they always involved Laura, we'd have discussions together.

PB: We said you're doctors, you know best, that's how we worked with them. It kind of all gelled together at the Children's

C: Whenever Laura required an inpatient stay, one or two of you would be able to be there with Laura?

<Connection dropped out>

C: Can you explain how your role changed in adult hospital, from your perspective

PB: None of them gelled together, Laura had lots of complex medical conditions and in children they talked together, in the adult hospital they dont do that

C: So the clinicians weren't looking at the totality of Laura, is that what you're saying to me?

PB: No they wasn't

C: How were you involved in Laura's care at the adult hospital?

PB: They didn't involve us in anything, they didn't ask our opinions, they didn't involve us in meetings to discuss what was best for Laura

C asks whether they were able to stay with Laura in adult hospital

PB: eventually yes... we said we'd never left her and weren't going to start now

C: In terms of way treatment options were discussed with you and Laura, what were your experiences of that

PB: They never discussed anything with Laura, she'd hold her hands out for doctors to come, they could do a bit of makaton, one of doctors wld say 'what's she on with' and I'd try to tell them what Laura was saying, they were back out door before I'd even finished telling them

C asks if hospital passport was same document in adults or different

C asks if can remember how it said staff should communicate with Laura

Patricia explains said she used makaton and had little speech

PB: They never gave Laura a chance, they never spoke with her. It was heart breaking, Laura was trying to speak to them but they wouldn't listen to her. We asked her to check her legs when they were so heavy, they wouldn't even do that.

C: So was your experience that they tended to speak to you, not to Laura?

PB: Yes they did

C: Were you able to explain to Laura after that what the doctors has said

PB: Yes we did

C: You've said it was heart breaking to you they were ignoring Laura, what was Laura's reaction?

PB: She got very upset, she was a lovely girl, she liked people, it did really upset Laura that they didn't speak with her.

PB: Laura was the patient, they should have been seen to her, and given her a chance. It's like she was invisible.

C moves to last admission, her understanding was Laura was due to have routine procedure, how unwell was Laura from middle September 2016

PB: She wasn't, she wasn't showing any signs of being unwell to us. The Saturday before Laura went in on Sunday my cousin and her daughter came. Tina was doing jigsaws with her, said come on Laura are you hiding this piece, and she produced it.

PB: Laura was just normal, she was picking at her food a little. As treat before we took her in on Saturday we took her to Whitby for fish and chips, she ate that fish... when she went in on the Sunday she didn't have anything to eat at all.

C: How distressing was the ulcer on her eye she was due to go in for

PB: She was coping fine, we had drops from GP, she was brilliant with medication. If you got syringes and filled with drugs Laura would give them to herself.

C: So your understanding from pre-op assessment was everything was ok and procedure would go ahead as planned?

PB: Yes we did

C: This would ordinarily be a procedure where someone is in and out the same day; what was your understanding for Laura's admission on 26th

PB: I tried all week to find out, we were told anaesthetist had Laura's file. We said Laura couldn't come in as day case because she has diabetes, needs to go on sliding scale. Friday before she went in I spoke Dr Tattersall and it was her that arranged for her to go on Ward E2

C asks what happened on admission

PB explains anaesthetist was amazed no-one had let them know about Laura's low potassium "it was in her boots"

C: Did she explain what might have caused that or why the surgery couldn't go ahead?

PB: No, no

C: What happened after that?

PB: Laura was left, I think they started the potassium treatment on 27th

[anaesthetist had explained known it was low for 2wks, surprised hadn't been addressed]

We were told she couldn't stay on eye ward, moved to Ward E2

Coroner confirms Laura was familiar with ward; she was, it was infectious disease ward

PB: They did give her XXX for her immune system, that was first and last time they let her have it, because of fluid overload.

PB: But we didn't know anything was wrong with Laura at that stage, because no-one had told us. We learnt that Laura had developed methotrexate poisoning, we learnt she'd got pneumonia, we learned from her files but no-one told us that she'd got sepsis.

PB: Her albumin level was very low, was causing all this water, was coming out over her back, her legs, her tummy, her feet.

C: In terms of what Laura was able to eat and drink during initial stage; she started potassium treatment on 27th, thru to moving to Ward E2, was she still eating or drinking?

PB: She never had anything to eat the whole time she was in hospital, all she lived on was her rice milk and blackcurrant drink. We kept saying to the doctors, this isn't right, why cant she have TPN like before, she can't survive on no food.

PB: When she first went in we asked if she could have E208 but were told Dr Lobo wouldn't let her have it, we don't know why.

C: Was Laura not offered food or did she not want it?

PB: She just pushed the food away, she didn't want it.

C: In your experience as experts in Laura was it unusual she didn't want food?

PB: Yes very, she loved her food.

C asks how she coped with TPN previously

PB: She coped tremendously in Children's Hospital, she had it for 6wks, by end few days she was getting fed up but she coped tremendously

C: Explain to me your role in getting to understand why TPN was necessary, how did you keep her on track when she got fed up with it

PB: We explained it was doing best to make her Chron's disease better, she accepted that. Last few days Laura got fed up, they let her come off a few hours, we took her out, when we went back we explained she'd have to go back on TPN and she accepted that and she went back on

C: From your perspective, her overall condition on TPN, she was well with that? It helped her?

PB: Yes she was, it did, yes

C: So last admission when Laura was declining food, how unwell did she seem?

PB: She was getting worse, you cld see it, she was deteriorating day by day

C explains how they knew Laura best, what did her deteriorating look like?

PB explains how she wasn't interested in her puzzles, games or books, it wasn't Laura

C: There was some suggestion Laura had pulled her PICC line out, but you said she didn't. What was your understanding had happened?

PB: She was on intensive care unit, she always slept with one of us, she'd wrap herself around you

PB: she always had cold feet and she'd put them on you. At this time Kenneth was on the bed cuddled with her, I was on a chair and woke up and thought bed looked wet, Kenneth woke up but Laura didn't. The line was on bed, we thought it would alarm if it came out but it didn't.

PB: Laura's bed was wet through, her PJs were, I put PICC line on floor and went to try find nurse, she'd been on her break. I said Laura's PICC line was out but she was still asleep so she couldn't have taken it out.

PB: She would have said to us she'd taken it out and held it up. We know Laura didn't take that out, how it came to be out I dont know

C asks about Laura's parents asking about TPN

Patricia describes they kept raising it but no-one would answer

PB: No-one seemed to keep us up to date with it, all we were told was Professor Lobo had delayed it for a week because he said it would all blow over

C: So were you working on the basis that Laura was going to get TPN it was just a case of when?

PB: Yes, yes

C: Were you involved in any meetings or discussions about whether Laura should get TPN or not?

PB: No, we were never involved in no meetings or discussions, no

C: Did Prof Lobo or one of his team ever discuss it with you?

PB: A TPN nurse came in first and said Laura can't have TPN because she's got an infection, we can't have anyone here at the weekend to deal with TPN.

PB: She also said the adult TPN bags were too large, would have to order from the Children's. Then Prof Lobo came in and we said when will Laura get this TPN and to that we got no comment

C: What about food, I understand Laura wasn't eating but what did they do, did they still offer food?

PB: Yes, one time they sent cook up, to try make menus, they were nice, tried to make a smaller plate, she had couple spoonfull of potato, we kept trying but she didn't want it

C: So point from admission in September to when she died in OCtober, how many days did she go without eating?

PB: If you include the few days before she went in when she was picking, I'd say about 28 days without food

C: I understand you'd be very concerned throughout her admission, but at what point did they really escalate for you?

PB: The day before she died I said to a doctor can you please, please help Laura, she's deteriorating, we need help

PB describes sending Dr Tattersall a text saying 'please, please can you help Laura'

C offers Patricia a break, she wants to carry on

C: Were you aware of how significant the infection Laura had was during her admission?

PB: No. Nobody told us how bad it was

C: Did anybody explain there was a possibility that Laura might not survive this admission?

PB: No

C: in terms of understanding the various treatments Laura needed during last admission, we know she had methotrexate poisoning needed treating, low potassium needed treating

C: infection that needed treating and we know she wasn't eating and that needed treating. How were you treated as Laura's parents and acting as advocates? What was your involvement in those decisions?

PB: They didn't involve us in anything.

They'd tell us blood tests said such and so that was it.

We weren't involved in any discussions, if we had been we could have helped the doctors, help them to treat Laura.

PB: The doctors never had Laura's notes, it took then two weeks to get them.

C: Two ways of looking at it, one way is you cld influence decisions, the other is that you as her parents had full picture, and I'm guessing you were denied that opportunity as well, that's your view?

PB: Yes

C: You were asking for TPN, if clinical view had been Laura couldn't have TPN for whatever reason, would you have been prepared to have that discussion?

PB: Yes, that's what they always did at Children's had that discussion with Laura and us, we'd all make a decision, but we were never given that opportunity at the adults

C: We'll come to clinical reasons why TPN wasn't appropriate throughout evidence... if explained to you why clinician's hadn't felt was in Laura's best interest, do you think you'd have opposed that view or accepted it?

PB: If they'd explained TPN wasn't in Laura's best interests then yes we'd have accepted it and asked if there was anything else they could do for nutrition

C: You don't believe you were ever involved in those decisions, and Laura wasn't?

PB: no

C: I've asked when you became gravely concerned, you've described the day before she died and the escalating conversations; you've said she was deteriorating day by day, how did that look to you?

PB: She was very swollen, her legs were so heavy, she couldn't move her own legs, she was becoming so heavy with water we had to move her. Laura was very particular with her clothes and they kept getting wet, we had to keep changing them for her.

PB: We kept saying to doctors can you do anything for all this water, it's not right, and they said we'll give her a tablet, we said Laura can't take tablets, that's all we'd get.

C: Is that something you'd expect to be in Laura's hospital passport.

PB: It was. She had it in her feet in Children's and they sorted it

C: You've also spoken about Laura not liking orange, she liked blackcurrant squash that was in her hospital passport?

PB: Yes, if they'd have looked they'd have known Laura didn't like orange

C: Did you have concerns about supplements given to Laura as well?

PB: Yes they gave her Fortisips and that had lactose in it, it made her very sick and made diarrhea worse...

PB: we said to dietician and they said they're fine, we said no, read at the bottom, they do include lactose and Laura is allergic to lactose

PB: We asked dietician if Laura could have E208 that she'd always got on with, we were told Prof Lobo didn't want her to have it but she did eventually get it on 12 Oct

PB: It made it difficult for Laura to have drinks when she was fluid overloaded... Laura liked to drink at night, we couldn't give her a drink at night because of fluid overload. We had to count water in Laura's medication in with 750ml

C: How much medication was she on?

PB: She was on quite a lot

C: Coming back to TPN line and you were told bag would be too big for Laura, would need ordering in, explain that conversation to me

PB: We were talking to the TPN Nurse, she said the bags were too big for Laura, we can't put them down, would need to order one from Children's Hospital, whether one was placed we don't know

C: I've got both your statements, the contents of those I've admitted in evidence. Is there anything else I haven't given you an opportunity to say or you think I need to be aware of about Laura's admission?

Ken B: I'd say Laura had a good understanding of everything, people who knew her had no problem communicating with her. You'd ask questions so she could answer yes or no and she had a really good understanding.

C: Anything else Mr Booth?

KB: No

C: Mr Spencer, any questions?

PS: There are some issues the Trust disagree with, we can address in another way, if you're content with that I've no questions for Mr and Mrs Booth

C: I'm content with that

Mr Lomas: What was your experience of the use of Laura's hospital passport being used in hospital?

PB: We asked doctors if they'd seen Laura's passport and they'd say no; Dr Tattersall said she'd tried to put it on Laura's files but when we asked the doctors they'd say they'd never seen it

ML: Was it near Laura's bed?

PB: No, we never saw it

ML: We heard in transition you had concerns about adult equipment not fitting Laura, what was your experience on this admission?

PB: It wasn't available, we were told it was in a box but no-one knew where it was...

Patricia describes cannulas, sats machine, TPN bags and other equipment being too big and had to get equipment from children's hospitals

Patricia describes staff trying to get water sample and it really distressed Laura.

ML: You mentioned issue of hospital records from Children's Hospital, we heard from Dr Nerula about that. When did it become about that you were aware they'd been requested?

PB: We were told when we were on Intensive Care Unit they'd requested Laura's notes but it would take 2wks. I said can I go around and colelct them, its only around the corner but I was told no. They got them on 14th eventually

[Laura was admitted on 25/9 and died on 19/10]

ML asks about Laura's appetite before admission

Patricia explained she was picking for a couple of days but ate all her fish in Whitby

ML asks about Laura's infected bottom.

PB explains a nurse said: If you knew she wasn't well, what have you fetched her in for... this is an eye ward, we don't deal with anything like that

PB explains she needed antibiotics

ML asks about Laura stopping eating

PB: We asked why has Laura stopped eating but we were never told why she'd stopped eating.

ML: Some indication in notes that Laura might have had a sore mouth or throat

PB: No-one ever looked in her mouth. If Laura had a sore throat she'd have pointed to her throat, if she had a sore tummy she'd have pointed to that

ML: There was reference in the notes to Laura spitting food out

PB: She never had any food to spit out, she pushed it away, she never did spit food out

ML asks if was any discussion about moving Laura to Ward E2 as had been plan in transition arrangements

PB doesn't recall any discussions

ML mentions resuscitation

PB: Doctor asked about resuscitation and we said 'is Laura as ill as that' and no-one explained

ML why was she moved to E2?

PB: They said this is an Eye Ward not a medical ward, we need Laura off the ward.

ML: How did fortisips come about?

PB: Nurse fetched her jacket potato but she wouldn't touch it, then she fetched fortisip, Laura tried it and it made her sick. They tried her on fortitude the next day but that had lactose in it and made her sick

ML: Were you aware that it had milk products in it.

PB: They didn't tell us, they said was to build her up, we encouraged her, then Kenneth read on back it said had lactose in it. If they'd have looked in Laura's passport it would have said was lactose intolerant

ML: We know first time laura saw dietician was on 3 October, do you know why that came about?

PB: No

ML: Suggestion was to continue on fortitude, was there any discussion about that?

PB: No, when it came next day we said had lactose in and making her sick. She didn't realise that.

ML: Was there any discussion at that point, before Laura went to critical care unit about her having E208

PB: No, she didn't get it until 12 Oct

ML: Did you have any discussion with dietician about this?

PB: Yes, we said when we came in would they not give her E208 because Laura gets on with that, we dont know why it was delayed until 12th

ML: We know first attempt at TPN was after referral was made on 6 Oct. Laura went to Critical Care Unit from 3-6 October. Were you aware a formal referral was made to nutritional support team?

PB: No

ML: What did you know o possibility of Laura having TPN?

PB: Day before Laura went back to E2 they fitted another PICC line and we said what's that for, they said there's talk of Laura having TPN but that's all we got to know

ML: This previous weekend, on Fri 7th, did you have any discussion with anyone then about TPN?

PB: No we didn't, no

ML asks about Prof Lobo saying Laura couldn't have E208 and Patricia explains she asked a doctor and that's what she was told.

PB: The TPN was meant to be coming the day before Laura died, we were told, but it never came.

PB: When we knew TPN was delayed we asked if Laura could have E208 and we were told Prof Lobo didn't want her to have that, we don't know why

[reference made to Prof Lobo saying 'it'd all blow over']

ML: Was E208 readily available in adult hospital?

PB: No, had to be ordered from Children's and I came home and got a few we had.

ML: Between fortisips being stopped and E208 being available did Laura have any nutrition in that time?

PB: No, only her black currant and her rice milk

ML asks about discussion with nurse and Prof Lobo, where it took place

PB: It was on E2 ward, didnt take very long, we were told there was no-one there to deal with TPN over the weekend

ML: And size of bag, and because Laura had an infection

PB: Yes

ML: Any indication about when Laura would get TPN?

PB: No, we got no answers from them. We were told about re-feeding syndrome because Laura had been without food for so long, Dr Tattersall described that to us.

ML: On 13 October you told Dr Tattersall you felt no-one was listening to you, what was your concern at that stage?

PB: We said no-one can live on blackcurrant and rice milk, she was deteriorating day by day, no-one would listen to us

ML: What was plan from Monday, did you understand what plan was?

PB: No, we weren't told. When doctors came in in the morning we'd ask them and they'd say they didn't know, they didn't do TPN, it wasn't up to them.

ML: Did anything change between the monday and Wednesday when Laura died?

PB: We got Dr Tattersall to come see her, she said she was going to insist they give her TPN. They tried three times to put PICC line in the night Laura died, but she couldn't get it in

ML: Dr Tattersall came on the Wednesday morning, is that right?

PB: Yes

ML: We know from text messages you were concerned about Laura?

PB: Yes

ML: We see in records they were going to start TPN on Friday, were you aware of that?

PB: No, we saw it in reports afterwards.

ML: What was the plan did you understand?

PB: There wasn't a plan, no-one had one.

ML: And when Dr Tattersall came that's when there was a plan?

PB: Yes, she said that's not Laura, she said she'd sort it. A nurse said they'd put a PICC line in, was risk of re-feeding, but they couldn't get PICC line in so Laura never got TPN

Patricia describes being told would have to start slowly because of risk of re-feeding syndrome

ML asks about attempts to put PICC line in.

PB: Couldn't get line in, would book her in for 7 Nov to get another PICC line in, so she sent doctor up to put cannula in her hand, but Laura didn't get TPN because she passed away

ML asks what 7 November date was, 3wks later

PB: Had to book for PICC line, and that's as soon as they could do it.

KB interrupts to say that she had a PICC line that they were using for medication, they needed another for nutrition

PB: We were told the PICC line put in in critical care should have been a double loop but was a single one

KB: Cannulas didn't last long... Laura didn't mind PICC lines, she had no trouble with it, she did have trouble with cannulas, they don't last long, that's why Dr Tattersall would have asked for another PICC line

ML: Madam I've nothing further to ask, I'm very grateful.

Coroner thanks Mr and Mrs Booth for giving their evidence, knows it wasn't easy.

She releases them from their oath.

C: It's 12:45 i'll suggest we take lunch break now, we've made good time this morning.

Court is adjourned, we'll be back at 2pm