Guidance has been developed to help GP practices support bereaved parents – and members of the practice team – after the death of a child. Emma Wilkinson explains more.
The death of a child is a devastating event for a family. It can also be emotionally challenging for the general practice teams supporting the bereaved parents, often leaving them feeling unprepared, shaken, and unsure of how best to help.
A new framework developed by NHS Cheshire and Merseyside Integrated Care Board (ICB) in collaboration with The Alder Centre and Claire House Children’s Hospice aims to support practices in ‘providing solace and support’ for the bereaved patients and those in the practice team. The RCGP has said it should be taken on board by practices around the country.
When a Child Dies: An NHS Cheshire and Merseyside Framework for General Practice has been co-developed by Dr Jonathan Griffiths, a GP in Cheshire whose young son died in 2004 from a rare haematological condition.
Dr Griffiths said that bereaved parents reported ‘a real mix’ of experiences when it came to the support they received from their local practice.
Challenges
Given that a child’s death is a rare event for a GP practice to encounter – the framework notes around 3,500 children die each year in England – perhaps it is unsurprising that many feel ill-equipped to support parents.
‘Some were very enthusiastic about how good their GP was, and others said I didn’t hear from them,’ said Dr Griffiths, who is also the ICB’s associate medical director of primary care.
‘People don’t like to talk about child death, it’s such a deeply upsetting subject for so many people, and therefore bereaved parents can feel that they’re unheard and not very well supported,’ he said.
And he says the role of GP becomes more challenging in such tragic circumstances.
‘GPs struggle to know what to do, and they may not have encountered it before.
‘We are trained to fix things and you can’t fix this. Your most valuable and important contribution is probably going to be to sit and be there and to listen,’ says Dr Griffiths.
Practical steps
The framework offers structured, practical steps for GPs notified of a child’s death, including the removal of the child’s name from NHS systems to prevent distressing administrative errors. It recommends updating the parents’ records with relevant coding and outlines how to engage in sudden and unexpected death in childhood (SUDIC) processes.
There is also advice on potential ways to support bereaved parents, including listening to their needs, signposting to services and organisations that can help them and discussions about how and when they return to work.
The guidance also provides a compassionate roadmap. It addresses how GPs and the wider team should talk to families, what language to use, and – importantly – what not to say. For example, it advises GPs to avoid over-medicalising grief as some parents reported they were offered anti-depressants when they did not feel they were required.
Dr Griffiths said: ‘We’ve given a lot of practical suggestions as to how we think you should approach this. When you have an early face-to-face conversation with them, we would encourage home visiting is probably going to be required, and talking about why you’re visiting them, and what you’re going to say to them.’
Practice team
The final section, co-authored by fellow GP Dr Bryony Kendall, addresses the toll such tragedies can take on practice teams themselves and offers strategies for supporting everyone in the practice – clinical and non-clinical alike.
The guidance encourages early team debriefs to acknowledge the impact on staff, sensitivity around workload, particularly for those closely involved in the family’s care – for example, the GP – and encouraging open conversations.
RCGP honorary secretary Dr Michael Mulholland said that the framework would help GP practices to support parents through devastating grief while looking after themselves through the process.
He encouraged all GP practices to ‘read and adapt for their own local settings’.
Download the framework here.
A checklist for practice managers
The framework has a checklist to guide practice teams on what to do when notified of a child’s death. This includes:
- Removing the child’s details from systems such as the NHS Spine and Child Health Information Service to avoid inappropriate correspondence.
- Coding the parents’ records to indicate bereavement and prevent insensitive communication.
- Engaging with local safeguarding procedures, including the sudden and unexpected death in childhood (SUDIC) process, where appropriate.
Source: When a Child Dies: An NHS Cheshire and Merseyside Framework for General Practice
An earlier version of this story first appeared on our sister publication Pulse.
