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Parents of children with congenital heart disease

Accommodation for parents

Adequate facilities and accommodation for parents should be available when a child with a congenital heart defect is admitted to hospital. Families should be accommodated within a reasonable distance from the cardiac ward/paediatric intensive care unit.

Here parents talk about their experiences of the accommodation they were given while their child was in hospital. It was very important for them that their needs had been considered, especially for those mothers who had only recently given birth.

Many parents said the accommodation at the hospital when their child was in intensive care had been superb and they were very grateful. Depending on the hospital, provision ranged from bunk beds in a room to a self-contained flat adjacent to the hospital. The room had a telephone with a direct link to the ward; some places had a self-contained kitchen or bathroom, others had shared facilities. But all were close to the hospital. Much of the accommodation was self catering but parents could in some cases also buy canteen food at staff prices. One couple whose child spent 4 and a half months in intensive care said that without that provision they would not have been able to afford staying in London.

 

Describes the parent accommodation facilities while her son was intensive care and when he moved...

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Describes the parent accommodation facilities while her son was intensive care and when he moved...

Age at interview: 4
Sex: Male
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Mother' We could have all stayed together in a block on the site and probably if he was younger we might have done that but because things were going on we didn't need to. But there were, just along the corridor we had our own swipe key, you booked in and out per night or however many nights when you're going to be in the hospital and two big shower cubicles and you just came in and went from there. And you could go in there with your family as well and sit there. I actually took my son in there as well and we sat and watched a bit of Telly together and it was calmer and it was more relaxed and away from the hospital environment. As long as they knew where you were.

It was really, really relaxed. You booked in sort of when you got there and there was probably 16 beds I think, sort of in rooms, bunk beds. And you made your own bed up and you cleared up after you and there's a kitchen. So it was absolutely brilliant and you come and go and if you needed a rest or you wanted a break the nurses would take care of, while he was having a sleep and you could go and sit. And I didn't particularly. And in fact I stayed in there one night when he's actually had the operation but the rest of it I stayed on the ward. And that was quite exciting because when they come up to the ward at this particular hospital they're in  a special bay where they get a lot of attention, when the monitors beep, they're there. As they get stronger, they move out and I pulled up my put-me-up bed next to him and we'd pull all the curtains round us, tucked the television round the curtains and we were in there cocooned. And, and I said to her 'Can I sleep here?' And they said 'Whatever you want to do, yes, sleep wherever you like. If you want to go anywhere, we'll keep an eye on him' and they brought me a cup of tea and toast in bed with him and.

Father' Oh, it's better than here.

Mother' It was, accommodation was fantastic. So you just need to ask, or they'll say to you 'Are you staying, what are your...'.  When you go for your pre-meds, certainly then ask about the accommodation. I mean every hospital's different but we, you had your swipe key and you could do what you liked.

 

Describes the parent accommodation at a hospital in Scotland where they were able to stay with...

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Describes the parent accommodation at a hospital in Scotland where they were able to stay with...

Age at interview: 5
Sex: Male
Age at diagnosis: 2
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We were staying in the accommodation beside the hospital and again that was just superb, the accommodation, the facility that is there for parents as well. And everything was there for us. There was laundry facilities, just everything, a TV room and whatever. And the food in the hospital and everything, I couldn't fault anything. The way we were looked after and the way my daughter was looked after they were really, are superb people. They really are.

And, can you tell me about the accommodation?  How you, you said it was in the letter, is that right?

The accommodation, we had a leaflet on accommodation which was just alongside the hospital really, building's that are adjacent to the hospital. And where we were it was different, it was quite a big accommodation and it was sort of individual rooms but the room that we had was actually, it was an individual sort of accommodation from the rest of it actually and it was two rooms so there was myself and my husband and another family in the other room and we had our own sort of kitchen. It was like a little flat to, actually a sort of self-contained flat, our part of it. And we'd a bathroom that we shared with the other couple. And we were able to use the kitchen and things like that. And it was quite good because we met the other family that were beside us and things and there was a telephone and everything linked to the accommodation as well so that the hospital, the ward phoned over if they needed you or you could phone over to the ward and things as well if you were trying to get rest through the night and things.

So it was excellent, it was really good. And you were able to prepare your own meals and things or you could have the meals in the hospital.

 

Although accommodation was usually provided, some parents found it was not available when they first arrived at the hospital. One couple had to sleep in the chair beside their child's bed or the bed in a day ward until a room was found while their child was in intensive care.

 

When their child was not intensive care they slept next to the chair or in the day ward which she...

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When their child was not intensive care they slept next to the chair or in the day ward which she...

Age at interview: 3
Sex: Male
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Mother' Usually either we'd both stay or one or other of us would stay and you slept where you could which sometimes was for you in a chair next to Toby [Father' Yeah]. There was a day ward where if that wasn't being used by a doctor or something you could go and sleep in a bed in the day ward. There was a room that we got one night. One night we had an isolation room that we tried to sleep in 'oh that was a nightmare wasn't it and that was the night [Father' Hmm]. But we didn't actually get a room, like a parents room until he was in intensive care and then we had that for I suppose about 5 nights.

Father' Yeah, there's, there's, there's a block at the hospital.

Mother' There's only so many...

Father' With rooms for parents that stop in long term. [Mother' Hmm] you know. You get sort of like your own room allocated to you but they're like chicken's teeth, with everybody, everybody wants one but nobody can get one. And really, you're very fortunate if you get proper accommodation in the hospital.

Mother' I think newborn babies, I think their mums get one because obviously they're really tired so there's more demand than there is beds and often mums would just get a mattress and sleep next to the child.

But if you could get away from your child in the ward I mean for me I needed to get away. You, you weren't so bothered. You would have slept in a chair [Father' Yes, yeah, to stay, stay with him] didn't you? Next to him. But I just needed to go somewhere and sleep.

Another couple said that one parent stayed with their son, while the other parent and sibling stayed in a hotel at the hospital's expense for the first night in hospital. One new mum found that no accommodation was available for them when one of her twins was transferred to a specialist hospital for emergency surgery at the Easter weekend and they had spent the first night on the children's ward.

 

Provision in the parent accommodation was not available for the first two nights when her newborn...

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Provision in the parent accommodation was not available for the first two nights when her newborn...

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But when we got transferred from the hospital that the twins were born at to the hospital where he had his surgery, we got told at the hospital that yes there was a room and everything for us when we got there but when we got there, obviously when we got to the ward the nurses weren't interested in whether we had, we weren't top concern. Their top concern was not for us to have a room, it was obviously for the care of our baby and obviously I found it very hard because I'd only just given birth two days before and I was still big, ankles swollen, bad back and because it was Easter weekend people had gone home early so we couldn't stay at the room that we were supposed to stay at so we actually spent the first night on the children's ward in a children's bed which was not nice. Especially with a newborn baby as well. And then the second night, that was the night before the baby was going to have his surgery, we were on Intensive Care because he was there the day before getting ready for surgery and actually one of the nurses on the Intensive Care Unit said that she will sort our room out for us that night and we did actually get a room with a bed and we stayed actually on top of the Intensive Care Unit in one of the parents' accommodation. And then the following day we stayed, where we were supposed to have actually.

 

Some parents could bring their other children to stay. One couple's older children visited their parents, which they said helped to give the family to feel more normal while their son was in hospital. Other parents said the accommodation had provided a sanctuary away from the hospital environment.

 

Comments that their other children visited them at the accommodation which gave them a sense of...

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Comments that their other children visited them at the accommodation which gave them a sense of...

Age at interview: 3
Sex: Male
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Mother' And I think as well when you're there for any length of time you actually lose touch with reality because your whole life revolves around the hospital you actually forget that there is life outside of the hospital.  I mean we were in the fortunate position that we had accommodation at the hospital and it was, it was pleasant accommodation so if you wanted to you had somewhere that you could retreat to.  But on saying that the only time we ever did retreat to the accommodation was to either go for something to eat, go and get washed or the children came. When Felix was in intensive care we never ever took them into intensive care so if he wasn't on the ward and they came then we'd go and visit them in the accommodation that we had.  It did help - didn't it? - having, having that accommodation [Father' Hmm]. That did give you sort of some sense of normality.

 

Describes the parent accommodation facilities at the hospital in London which they said it had...

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Describes the parent accommodation facilities at the hospital in London which they said it had...

Age at interview: 3
Sex: Male
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Because for us that was a big issue, moving centre. We didn't have lots of friends in the new place; we didn't have anywhere to stay. It was great that they had that all completely set up and there was a whole department that was there to look after the parents to make sure that you got somewhere to stay, that you were okay. That all that side was taken care of, which was great because you don't want to be worrying about where you're going to sleep when you've got your child going in for this major operation.

What did the accommodation involve?

It didn't cost anything and it involved picking up a key or they left a key at reception. And there were, I don't know how many houses, but there was one, it was across the road from the hospital, it was that close. And it was a house of about 12 rooms and we had a twin room and there was a cot in it for the baby and with an en-suite bathroom. So it was a private place that we could be to spend time together. There was a sitting room with a television, not that that worked particularly well, and there was a kitchen; there were cooking facilities, it was really good. The facilities were fantastic and we were very, very grateful for that. And whilst your child, again, was in intensive care accommodation was provided for both parents. That then switched once your child was out of intensive care but fortunately we were able to have a room for both of us still, and the baby. So, usually what happened is that once the child moved on to the ward the parent would sleep by the bedside but we'd never done it so far, so we didn't do it then either.

And we both went home at night when she went to sleep and we went and slept in our family room together with [our son] so that made it very nice for us. And I think to get out of the hospital and to spend that time, even if it is just going for a walk to buy a snack or just going for a walk round the block, to get out of the hospital environment when Miriam was in for an operation and to spend a bit of time together away from the stress of it has been very important. And I think it was important for [our son] as well because otherwise he was just completely hospitalized for that 10 days. 

When their child moved to the ward, one parent usually slept on a mattress or in a chair next to their child's bed (see Interview 17).


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Last reviewed July 2018.

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