Features

We need to talk about death

13 May 2019

How can you best support families who are in the sad position of mourning a child or a parent? Journalist Linsey Wynton reports.

Family Death

Death is a subject most of us are reluctant to talk about. Statistics bear this out. A survey by Child Bereavement UK found that one in 10 bereaved adults said some people had avoided them and almost half said the topics of death and dying should be on school curriculums to help address the balance (Child Bereavement UK, 2016).

Each day in the UK, 111 children under 18 lose a parent; 21 babies, children and teenagers below 18 die; and, nine babies are stillborn (Child Bereavement UK, 2017). And death reamins a taboo topic.

Dying Matters – a coalition of individual and organisational members across England and Wales – hope to put conversations about dying on the agenda with an awareness week themed ‘Are We Ready?’from 13 to 19 May.

Given societal attitudes especially, it’s vital that community practitioners (CPs) are confident in themselves to talk about death to parents and children who’re facing it or grieving. A new national bereavement care pathway for pregnancy and baby loss in England should go some way to helping (NBCP, 2018).

 

What do families need?

Sarah Harris, director of bereavement services at Child Bereavement UK, says: ‘Families tell us what is most helpful is professionals who are able to show their humanity. They need support from people, such as health visitors already known to them, who are well placed to offer acknowledgment of the loss, a listening ear, a sharing of knowledge to normalise grief reactions and signposting to
other services.’

Jenny Ward, acting chief executive of the Lullaby Trust - for families affected by sudden infant death syndrome (SIDS), says: ‘The HV’s role is key to ensuring families are supported and able to access counselling, support for siblings and family support. We would encourage them [HVs] to maintain contact with families, do not assume anyone else has, and seek support for themselves if they need it, either for their own personal wellbeing, or to get more information.

‘One mother who called our helpline recently described her HV as “her rock” for over two years after her baby died,’ reveals Jenny. ‘She wasn’t sure whether professionally she should have still been in contact with her, but she had gone the extra mile to ensure support was available to the family.’

Winston’s Wish was founded by a child psychologist and supports bereaved children, their families and professionals. Its head of clinical governance and professional development, Suzannah Phillips, says: ‘We often take calls from school nurses, health visitors and other professionals who come into direct contact with bereaved children, and who want to be able to provide support, but tell us they need support to do so.’

She says communication is easier when CPs know a family before their bereavement. ‘This means that the trust and communication are already in place. Time will need to be spent acquiring this with new families,’ she says.

Suzannah adds that CPs should consider a family’s culture, religion and beliefs in relation to bereavement. She adds: ‘Unexpected deaths can be incredibly complicated as there can be feelings of guilt, responsibility and anger towards the person who has died.’

Phil Lindsay, children’s services manager at Barnardo’s Child Bereavement Service in Northern Ireland, says: ‘A parent’s ability to hold and support their children to contain their big emotions around the time following bereavement is challenged by their own grief reactions. CPs could have a key role in being a “container” for the adults in their grief journey, which in turn would enable the children’s key adults to “contain” them.’

 

The elephant in the room

When Rhian Mannings’ (formerly Burke) baby son George died suddenly after a seizure in 2012, she and her husband Paul desperately needed help. But no professional visited them or phoned them. Unable to cope, Paul took his own life five days later.

Incredibly, the double loss spurred Rhian into setting up 2 Wish Upon a Star, a charity that supports bereaved families across Wales who’ve lost children or parents up to the age of 25. They also work with professionals, including CPs, who need guidance on helping grieving families. Rhian’s aim is that no one else in Wales goes through what she and Paul did.

Becky Jones, 2 Wish upon a Star’s immediate family support coordinator, says: ‘Rhian always says if there was someone in post like her when George died, then Paul may be with us now.’

The charity has run fundraising events with staff and volunteers dressed as elephants to symbolise ‘the elephant in the room’: death. ‘Bereavement is not talked about as it should be,’ Becky says. ‘Death is a part of life and, unfortunately, sudden death can be a part of a lot of people’s lives and the availability of proper support is not there.’

Becky stresses the importance of families being contacted within 24 hours of the loss of a child or parent saying: ‘Bereaved families are going through the worst time of their life and you can re-traumatise them by not offering adequate support or being very cold.’

 

Plugging support gaps

Support services for families and professionals who care for those grieving varies across the UK. Sarah says: ‘There is some good support available via some NHS trusts. However, the level of support available remains a “postcode lottery”.’

Since 2012, Child Bereavement UK has mapped bereavement services nationally and has plugged the gaps in areas including Liverpool, Hull, Middlesbrough, Manchester, Bradford, Stoke and parts of Scotland.

Various specialist third-sector support organisations exist, including Barnardo’s Child Bereavement Service, which is part-funded by Northern Ireland’s Public Health Agency, to help children who’ve experienced a traumatic death of a sibling or parent.

Phil says: ‘We know that the majority of pupils will experience the death of someone close to them by the time they leave school. Bereavement can disrupt children’s learning and increases their risk of poor outcomes. Therefore, training for schools and key CPs is vital.’

Meanwhile, the Lullaby Trust has called for national continuity of care for bereaved families tailored to their individual needs, for ring-fenced funding and for clinical commissioning groups to prioritise bereavement support.

 

Supporting you

Sarah from Child Bereavement UK says: ‘Training in supporting bereaved families, particularly when a baby or child dies, or a child is bereaved, is frequently not covered in the core training of many [health] professionals. Many tell us they feel ill-prepared and ill-equipped to know what to say or do and how to provide support with skill and confidence when they are faced with child bereavement.’

Specifically - through feedback from professionals - Child Bereavement UK found a lack of training for them in supporting bereaved children, young people, and families following the death of a baby, suicides and traumatic deaths.

Though training and support is available via the third sector for professionals including CPs, getting time and funding for it
can be challenging.

Sarah continues: ‘Many statutory sectors have faced cuts and many professionals have limited access to funded training. Many attendees are self-funding and take annual leave to attend our training.’ Working with other charities, Child Bereavement 
UK offers a number of subsidised training places that can be arranged in workplaces.

Jenny adds: ‘Cost and time for training are the most common barriers we face when offering training.’

 

HV Pam Allanson who has experienced bereaved families has this advice for CPs
The health visitor view

Talking

An HV from Northern Ireland* says she has had no bereavement training, but dealt with three child losses last year. She says: ‘We had a spate of cot deaths and in some cases the newly qualified HVs did not know the mothers and were dreading calling them. The tricky bit is, what time won’t cause intrusion yet will be supportive? It’s policy in our trust to call anyone with a loss who has a pregnancy viability of more than 24 weeks.

‘I knew the three mothers I had to call, because they had other children, so it was no problem for me to phone them, although it was awful.

‘One lady’s baby had died of an undiagnosed cardiac condition. She said, “Oh, please do come out.” It was delicate as the post-mortem found her baby’s condition should have been treatable with surgery.

‘But with her, and another lady whose baby was stillborn at 38 weeks, it was like talking to your sister. They were both able to talk about it, but they were worried about their partners because they did not talk openly about it.

‘The third lady was in disbelief – her baby had been 28 weeks, so it was a high-risk pregnancy. I did not stay terribly long in her house, because I felt I was opening this wound.

‘It took her 15 months to be ready to talk and I spoke to her GP who told her about a local stillbirth and neonatal support group.’

The HV knows families where parents have died of cancer and praises the work Barnardo’s Child Bereavement Service do. ‘I remember children showing me the wee memory boxes that Barnardo’s had done with them with photographs and mementos of their daddy,’ she says. 

 

Planning

An HV in London* attended a discharge planning meeting for a toddler with a life-limiting condition, who was due to come home to die. But first the HV wanted to meet his mum.

The HV says: ‘I made time to meet her and her toddler at the bedside so I would gain a better understanding. The little boy was immobile, bedbound and needed support with clearing his airway.’

She did not receive specific bereavement training, but says: ‘There is a very human element to the HV’s role – you have the opportunity to act as an advocate, offering emotional support and empathy.

‘My communication training gave me the skills to be able to truly listen, without criticism, and acknowledge her challenges, without having to always find solutions.’

Sadly, the little boy passed away in hospital. Afterwards the HV visited the family at home. She says: ‘I’d already formed a trusting relationship and could acknowledge the child's last few days. They needed to talk about the funeral, liaising with their older children’s school to offer them counselling, and ‘where the family goes from here’.’  

‘As a professional any bereavement is tough. My previous role of working with critically ill adults trained me to have some resilience. I have always considered child bereavement as more tragic, something as a parent you could not imagine having to go through.’ 

 


The bereaved mother

Before Sarah Miles’s baby daughter Eva died, her HV provided ‘listening sessions’. Sarah gave birth to premature twin girls in 2011 in West London. Charlotte spent three months in neonatal, while Eva spent six and a half months there, before coming home to die, after surgical complications.

Sarah says: ‘I could talk about Eva, while she was still in hospital, before she died. I could talk about how stressful I was finding the whole situation. The sessions gave me a minute to think “gosh, this is really hard”.’  

When Eva died, Sarah regularly spoke to the neonatal consultant psychologist, but her GP surgery heightened her grief by requesting Eva came in for vaccinations after she’d passed away.

Sarah, a campaigner for extended maternity and paternity leave for parents of premature babies, says: ‘When you are newly bereaved you can’t function properly – normally I’m quite practical, but I lost the ability to make decisions and everything seemed really hard work.’

She recommends HVs put parents in her circumstances in touch with a relevant support organisation. ‘You might think “you just google Sands, the stillbirth and neonatal death charity”, but I could not bring myself to do that. If the HV was to go onto the Sands website and tell the bereaved parent the time of the next local meeting, that would make a such a difference.’

Sarah is a trustee for The Smallest Things. The campaign has an Employer with Heart Charter: employers can sign up to offer extended maternity and paternity leave to parents of premature babies. For more, see bit.ly/smallest_things_EHC


Support in summary...

Georgia Panagiotaki, developmental psychology lecturer at University of East Anglia, advises CPs to:  

  • Refer grieving parents who are struggling to function/look after children to a GP for support such as counselling.  
  • Allow bereaved children a safe space to talk about their emotions, fears and worries.  
  • Ensure children have age-appropriate explanations about the reasons why their mum/ dad/ sibling died so they don’t feel responsible or worried they may die.  
  • Know charities/ support groups might help children more than grieving parent/s initially. 

Resources

  • Child Bereavement UK is a charity supporting bereaved children and families who’ve lost a child, and educating professionals. Helpline: 0800 028 8840; childbereavementuk.org and (schools) elephantsteaparty.co.uk
  • The Lullaby Trust charity provides advice on safer sleep for babies and provides emotional support for bereaved families and support on SIDS. Helpline: 0808 802 6868; lullabytrust.org.uk
  • Winston’s Wish is a charity supporting bereaved children, their families and the professionals who support them. Helpline: 08088 020 021; winstonswish.org
  • 2 Wish Upon a Star is a charity in Wales who help families following the sudden or traumatic death of a child or parent under 25. Main number: 01443 853125 2wishuponastar.org
  • Support Around Death from NHS Education for Scotland provide bereavement training and educational resources for professionals sad.scot.nhs.uk
  • Barnardo’s Child Bereavement Service (Northern Ireland) provide support to bereaved children up to 18, an advice line for adults (028 9066 8333), and training for parents and professionals bit.ly/Barnardos_NI  
  • Cruse is a leading bereavement charity that helps all ages and have resources for professionals. Helpline: 0808 808 1677; cruse.org.uk and (Scotland) 0845 600 2227; crusescotland.org.uk  
  • Sands, the stillbirth and neo-natal death charity, offers support for parents and training for professionals. Helpline: 0808 164 3332; sands.org.uk  
  • NHS England has a guide for parents and carers, When a child dies bit.ly/NHS_bereavement
  • Dying Matters helps people talk more openly about death and bereavement dyingmatters.org 

References

Child Bereavement UK. (2017) UK Death and Bereavement Statistics. See: https://childbereavementuk.org/about-us/death-bereavement-statistics/ (accessed 17 April 2019).

Child Bereavement UK. (2016) UK Death and Bereavement Statistics. See: https://childbereavementuk.org/about-us/death-bereavement-statistics/ (accessed 17 April 2019).
 
National Bereavement Care Pathway. (2018) Neonatal Death Bereavement Care Pathway. See:
http://www.nbcpathway.org.uk/file/aw_5844_nbcp_neonatal_death_pathway.pdf  (accessed 17 April 2019).

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