The investigative process
The emergency department
The JAA investigation typically starts when the baby is brought by ambulance to the Emergency Department (ED). Most parents felt that they had been well cared for while in the ED, reflecting that while in hospital there are professionals, usually nurses, dedicated to caring for the parents, while other professionals are busy with the tasks of investigating the death.
“The nurse that was on duty that morning, she was just amazing. She even sat and cried with us …. So you know, they were lovely, but they helped us so much … they were fantastic.” (mother)
All parents who wished to were able to spend time holding their baby to say goodbye. Paediatricians and specialist police took detailed medical histories from parents who did not talk of finding this intrusive or distressing.
Most of the negative issues described related to isolated incidents in an otherwise overall good experience. Poor communication was at the root of most negative experiences. Some parents had found their infants cold, stiff and lifeless so correctly assumed that their baby was dead; they were then confused by reports from hospital staff that the baby was being resuscitated or to hurry to the hospital.
“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)
Only one family described their time in the ED very negatively; the mother was distraught as she wanted to see her baby again but the police had removed him contrary to the SUDI protocol. She only managed to see her baby after a two hour wait in the ED; during this time she felt uninformed and unsupported.
“…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)
Professionals reported that the process in the ED seemed to work well for all the families except in the case of the mother described above.
Joint home visit by specialist police and paediatrician (JHV)
National statutory guidance on the management of SUDI stipulates that the scene of death should be examined jointly by specialist police and a paediatrician or specialist nurse, ideally with the parents present [
5]. Joint home visits took place in 15/21 SUDI cases with the parents present for all these. In two cases, JHV were not necessary as the infant died outside of the home. In the remaining cases, specialist police conducted scene examinations without support from clinicians and in 2/4 cases in the absence of parents.
The JHV was a positive or neutral experience for most parents but for a few mothers it was a significantly negative experience. Many parents said that the JHV did not make their situation any worse; they accepted the need for it and were content just to get it done and then have some private family time. There were many different elements of JHVs that parents found helpful; these included providing information, support returning to the scene of death, understanding possible reasons why their baby may have died and showing compassion. Parents appreciated professionals who were non-judgemental and compassionate; often parents blamed themselves for the death at this time.
“Yeah, I never felt once like they were judging me or anything.” (mother)
“I think the practicalities as well of everything that comes after a death in the family, that them being able to do it so quickly afterwards is really good because then it was done, if I’m honest.” (mother)
“I always felt I should go back and say thank you to the police who attended.” (mother)
There were some issues with poor communication during JHVs. Some parents had to retell their version of events yet again at the JHV, some felt uncomfortable with detailed questioning and thought professionals lacked compassion. A minority of parents did not understand why a JHV was necessary.
“Well it felt uncomfortable because I felt…they kept just asking questions but you’re just upset and you don’t want to speak but they keep pushing and pushing.” (mother)
“I couldn’t understand why the doctors were here … why would they want to come and look at her bedroom? …The paediatrician was slightly…not rude but to the point … ‘did you have the heating on?’ … ‘I don’t know what day it is at the moment and no, the heating wasn’t on’.” (mother)
The JHV itself was hugely difficult for a small minority of mothers who were so distraught that they could not bear to talk to professionals at all and they could not face returning home to the scene of the death. The professionals were aware of how upsetting some mothers found the JHV and as a result reflected on how they could obtain the necessary information yet cause the minimum distress.
“I didn’t want to be there so…I walked out; I left my boyfriend in the house with the police and doctor…” (mother)
The professionals who took part in JHVs were overwhelmingly in favour of them, often stating that they were the most useful part of the JAA with seeing the sleep scene and general home environment proving invaluable. Police found it helpful for the SUDI paediatrician to take the lead in asking questions; they felt this reduced the parents’ anxieties about the police involvement.
“…So I think that works well …I wanted it to look like it’s a medical professional taking the lead here and we were there and supporting. I think the home visit is very good. Because you’ve got that…two different lenses really you know.” (police officer)
“I felt it went quite well…I would say that the police handled it very sensitively… But Mum was able to sort of demonstrate to us on the double bed exactly where the baby was, what position Mum was in, what position Dad was in…I think they found it helpful to do that, although distressing, as it is for all parents.” (specialist nurse)
Where police alone examined the scene of death, the parents were not always present and in those where they were, found these more upsetting than those carried out jointly with a paediatrician. For example, one father described:
“It felt like he was just checking everything in the house…you’re on pins by this stage anyway, your life is shit, it can’t get any worse than this and then you’ve got someone peering about your house like you’re a murderer.” (father)
In four of the cases with police home visits information about the sleep scene or medical history was missed or recorded inaccurately:
“…because I remember reading the report and thinking ‘well that’s not really right’, there were certain things that were slightly wrong…” (father)
“I mean we have been out [to the home] since then, but yes probably we did [miss details], we did on the sort of precise sleeping arrangements. Yes I’m sure we did.” (specialist nurse)
Social care
Although social care was involved in nearly all the cases, social workers only made direct contact with a minority of families. In some families the contact was mainly to offer support; these parents were very appreciative of the social care input. However in two families there were child safeguarding concerns and these parents felt misled in that they thought they were being offered support and only later realised their parenting was being assessed. The social workers in these cases described the difficulties they had in trying to explain their role to parents particularly as the safeguarding concerns did not arise immediately.
“To me that [the death] was just an excuse for the social workers to get involved, they wanted to be fully on me because there’s been domestic violence between me and the Dad.” (mother)
“… so I had kind of gone in and was genuinely trying to offer some support for Mum and the children, and I was talking about bereavement counselling and things like that … it was only when I picked up the case file … that I thought, there are too many other risk factors here that are going on.” (social worker)
Ten families described particular issues with the actions of uniformed police officers furthering their distress; these events were all corroborated by police records. Uniformed officers had no prior training in managing SUDI cases, in contrast to the specialist police teams who are highly experienced in joint agency investigation of SUDI. Uniformed police often arrived at the home once the parents had telephoned for an ambulance; they seemed to treat the home as a crime scene and prioritised investigation of ‘the crime’ over supporting the parents. In five families, police refused parents access to collect vital possessions such as keys or mobile telephones and insisted families leave their homes immediately. In three cases, police officers did not allow parents to go to hospital with their infants, or removed infants from their parents while they waited for the ambulance to attend. All these actions were contrary to local multi-agency SUDI protocols.
“My wife went in the ambulance with the baby and my phone was upstairs in the bedroom and I needed my shoes as well; there was a police lady stood at the top of the stairs and she wouldn’t let me go upstairs….”(father)
“The ambulance just took him….. and the next thing the police were everywhere…. We said can we go and see him and they said no, we had to wait……but they just wouldn’t let us go….” (mother)
Although specialist police officers were available out of hours to manage SUDI cases, in four cases uniformed police waited until office hours to obtain specialist support. Sometimes specialist police were unaware of the actions undertaken by their uniformed colleagues but occasionally their actions were such that they negatively impacted on further investigations such as the analysis of the death scene.
“And I wasn’t sure whether the people [the uniformed police] that we were speaking to had had any experience of SUDIs or the SUDI protocol ….” (Specialist police officer)
“… So the police had gone in with great big size 10 boots and caused a lot of distress to the family, ahead of us getting there so … we had to recoup all of that…then it [the JHV] went quite well but we clearly could not look at properly the place where the baby had been sleeping because the police had removed all the bedding and so on was not how it had been.” (paediatrician)
A few families however, commented positively about uniformed police offering them emotional support and providing family members with transport to the hospital.
Follow-up for bereaved families – paediatricians and police
The parents’ experiences of follow-up were variable; they appreciated contact from paediatricians but found long waits for information difficult; most families waited nearly six months to learn of the cause of death. Half the families only had one follow-up visit from the paediatrician, primarily to explain the cause of death; these parents did not receive any information from the paediatrician or specialist nurse in the interim. The remaining families had telephone conversations or additional follow-up visits from the paediatrician or specialist nurse. Parents valued paediatricians telling them the cause of death in lay terms and having a chance to ask for more information; conversely those parents who first heard the cause of death at Inquest found this very distressing.
“The paediatrician was really good at this, how she read it to me; she was very clear and thorough. That I liked …. Them coming to your home and speaking to you before coroner’s court, I would absolutely agree with that…” (mother)
In eight families, parents felt that they had to do the chasing to get results; they often were telephoning the SUDI paediatrician or specialist nurse to be updated on the progress.
“…like they were supposed to keep in touch with me … just even if they never had any news… I don’t like the way it were done about that. I had to keep phoning and pestering them to know if there was anything….” (mother)
Only six families had follow-up contact with the police, usually by telephone. Most described this neutrally but these contacts caused significant distress to two families who found this intrusive and made them feel that they were under suspicion despite there being no child safeguarding concerns. However, many parents said that the police were sensitive in the way they returned any property to them following the investigation.
“My husband said the police officer was lovely. He took my husband in a room, they’d even put her clothes in a gift box and tissue paper inside, and they had even put a nappy in.” (mother)
Emotional support
Ten families felt let down by the lack of emotional support that was available and they often struggled to access bereavement services themselves. Some families found support from other bereaved parents, either through support groups or on an informal basis. The majority of parents found their family doctor to be helpful with many using them for bereavement support. In the year following the death mothers had a mean of 5.6 (95% CI 3.0–8.3) consultations for bereavement issues and fathers 3.3 (95% CI 0.2–6.8). Some parents however did not attend their family doctor at all and four parents’ primary care summary had no reference to the infant death. Often health visitors continued to visit mothers despite there being no pre-school children in the family, mothers valued their support enormously. Other mothers had no further contact with their health visitor and felt let down. However, not all parents wanted emotional support provision; many were content with the support given to them from their families and friends.
“I went to my doctor......I’m not so great on talking so they have sort of supported me because I haven’t actually been back to work or anything as such yet …” (mother)
“But then I got in touch with my friend’s health visitor, … She wasn’t my health visitor and I hadn’t got a baby anymore but she comes about every two weeks…. But she’s lovely.” (mother)
“I mean we went over it before…in hindsight, how pleased we were with the clinical side of things but disappointed with the mental health support.” (father)
Paediatricians and specialist nurses commented that they felt some families needed more emotional support than the JAA was able to provide.