Características generales de la cadena de Tiendas CUBALSE

Ideal Hospital Care

Parents are allowed to watch any resuscitation; after death parents are encouraged to hold their baby for as long as they wish, supervised by a member of staff. The consultant paediatrician and CAIU police officer should take jointly a detailed medical history and account of events from the parents; they must also explain the process of the JAA. The ED staff need to ensure that the parents are supported, cared for and kept informed throughout their time in the department.

Parents’ Experiences of Hospital Care – overall positive experiences

Almost all parents rated their experiences of care in the ED very highly, most of the negative issues reported related to isolated incidents in an otherwise overall good

191 experience. This is likely to reflect that whilst in hospital there are professionals, usually nurses, dedicated to caring for the parents, whilst other professionals are busy with other tasks of investigating the death.

Parents praised nurses for their support; this was even the case for the family who had a poor experience in hospital who still described the nurses as “exemplary”. Parents appreciated nurses caring for them by ensuring that they had food and drink, welcoming the extended family and arranging for religious services.

All hospital staff were very respectful of our wishes and explained everything well that they needed to do. We were given plenty of time and privacy with all our family after the baby died. (mother)

For some families, specialist bereavement teams cared for them even though their baby had been brought in dead to the ED; their help was highly valued.

She went to the bereavement suite …an absolutely fantastic lady, nothing was too much trouble...she even said you can bring her own toys, anything you want with her, just bring them up, which I did, and she was absolutely lovely.

(mother)

Parents appreciated staff crying with them for their babies, as in the literature review in chapter two, this showed to them that the staff understood the magnitude of their loss.

The nurse that was on duty that morning, she was just amazing. She even sat and cried with us … even the policeman broke down. So you know, they were lovely, but they helped us so much … they were fantastic. (mother)

Parents also described being supported by police officers in the ED both emotionally as in the quote above and practically by providing transport to the hospital. These were

192 uniformed and CAIU officers; clearly one would expect CAIU officers to be able to support parents but this also shows that empathy and kindness are not unique to the CAIU.

Despite the caring role of the hospital; the JAA investigation needs to start with a detailed account taken from the parents by police and the hospital or SUDI paediatrician. Parents rarely mentioned this at interview and when they did it was generally described in neutral terms so not considered as a negative or neutral event:

The paediatrician came in and explained the process …. I think I had to go through what had happened the day before…. leading up to the point where I found her. (mother)

However, nurses were still able to support parents even when other professionals were focussed on investigating the death:

Well, at first the paediatrician kept questioning me to find out what had gone on and what had happened, and then another nurse interrupted her and said ‘let her go and see her baby’ and then we were allowed to go into the room and hold her. (mother)

Poor experiences of hospital care

With one notable exception, parents’ poor experiences of care were isolated incidents in otherwise overall good care. A frequent complaint was that the room provided for the family was small and cramped “like a broom cupboard”. In some instances poor communication was at the root of the negative experience; parents had been told or assumed that their baby was dead and then were confused by mixed messages that the baby was being resuscitated or to hurry to the hospital.

193 … because I had already told myself that she had gone and then you’re telling me...not telling me but kind of giving me a false hope that you are trying to revive her … I felt quite angry because I thought you’ve built my hopes up...(mother)

But I was like ‘but she’s dead’ and she wouldn’t answer that question and so you have that moment of thinking ‘well maybe she’s not dead’. It was really horrible, absolutely awful. (mother)

These quotes would suggest that staff are trying to be kind breaking by bad news gently; but in reality the parents clearly know that their baby is dead and the false hope created makes the situation more painful. Similarly, in the quote below, staff were trying to be kind but actually leaving the parents alone in the relatives’ room was not helpful for them.

…then there was the sort of charade of …people coming in and going out and coming and going out and saying … ‘we need to ask you some questions but we’ll leave you for the time being’….. I got to the point where I sort of said ‘can someone actually ask us some questions’. (mother)

Another parental account reflects poor communication and a lack of empathy by medical staff without any suggestion as to why the doctor presented herself in such a way.

The doctor who worked on the baby did not explain anything and was very harsh with her words, I was made to feel like I had done wrong and she was very unsympathetic, not a nice lady. (mother)

Parents also highlighted poor communication between staff; one mother had to repeat her account of events several times, whilst in the ED, to different professionals. In

194 another case the baby had collapsed and died in the ED and the hospital staff while alerting the coroner had not thought to inform the police or commence a JAA

investigation. The parents were shocked to be telephoned by the ED consultant later at home to be told “Against our better judgement the police are now involved”.

One family rated their time in the ED very negatively; however, this mother arrived at the ED distraught as her baby had been declared dead at home by a paramedic and then taken from her; she desperately wanted to see her baby again but this was still not arranged until two hours after her arrival. Both poor communication and a lack of care and support were issues for this family which is in direct contrast to that perceived by all the others.

My sister had to go and ask just to get me some paracetamol just because my head was banging and no-one had come to say ‘are you okay?’... (mother) ...no-one had been applied to me sort of, to my care as such and we just didn’t know what was going on at any time... (mother)

Similarly, but to a lesser extent, another mother described the lack of care taken in obtaining hand and foot prints and dressing her baby. There were not appropriate paints or clothes in the ED but no attempt seems to have been made to find

alternatives; this lack of attention to detail spoilt some of the mother’s last memories of her baby.

Although she’s a girl they did her prints in blue…....so now when I look at them I think well that’s not her, she wasn’t a boy. (mother)

While some families described police supporting them in the ED (as detailed previously) others found their presence and actions distressing in that they showed a lack of understanding or sympathy for the parents; again focussing on the need to investigate

195 the death. One mother told of uniformed police insisting that she leave her baby, during resuscitation, for questioning.

Suddenly, these two policewomen came and said ‘can we have a word with you?’ And I said to them ‘can I sit down here because my son?’ and they said ‘no, would you come here’. (mother)

Another mother commented on the lack of sensitivity shown by the police when taking her baby’s clothes:

I’m just standing there looking at this stranger holding my baby’s clothes

because they were just in a clear bag... and to her it’s just a parcel that she’d got to hold,... that’s their job but a little bit of common sense… you don’t want to see those things.(mother)

The mother who felt that the hospital showed her little care also considered that the CAIU police were insensitive; however there were serious concerns about the circumstances of the death and as such mother did need formal questioning. This mother felt blamed by the police and this may be why she perceived them so negatively.

The policeman in the relatives’ room …. I just felt like he was constantly staring at me and making me feel really aware of how I was acting, what I was doing... and then from that point I didn’t want him anywhere near me …I wouldn’t go in the room in the end, I was just outside the hospital smoking. (mother)

Professionals’ experiences of hospital care

Professionals made few comments about parents’ experiences in the ED; these were a split between supporting the parents and investigating the death. One CAIU police

196 officer was horrified that the bereaved mother was placed in a tiny room in the ED near to other babies who could clearly be heard crying.

…but I felt that the worst place that the mother would want to be was in a room off a corridor where there are lots of other screaming babies basically. And I have to say I felt very uncomfortable. (police officer)

Some professionals commented on good practices in the ED. They complemented full medical histories taken by hospital paediatricians and joint examination of babies by police and paediatricians. They also criticised poor working practices in hospital. Frequently hospital paediatricians took a detailed medical history from the parents without waiting for CAIU police to arrive so preventing a joint history being taken. As a result often parents had to retell their story; although in other cases the written account was good enough that this was not needed. No police officers commented that joint history taking had resulted in contamination of evidence or that it was preferable for police to interview parents separately from the paediatrician.