Losing a baby or child is always immensely distressing – and a lack of joined up bereavement care is leaving many parents without adequate support when they need it the most.
Unless you were watching Victoria Derbyshire’s show earlier you may have missed news today of an investigation of bereavement services for families whose babies have been stillborn or died shortly after birth.
Antoinette Sandbach MP, who in 2009 lost her son Sam to Sudden Infant Death Syndrome when he was just five days old, is finding that across the country bereavement services are “patchy”. While the best hospital trusts have a clear pathway of support, many don’t, with bewildered and distraught parents left to their own devices to fight for the support they need.
In response, government health minister Ben Gummer’s analysis of this situation is surely one that most of us can agree with: “not good enough”. And this chimes with a House of Commons Select Committee report last year which concluded that bereavement support is fragmented, with services that are not consistently provided around the country, leaving families and carers with inadequate support.
We know from our experience of families calling our helpline that the pain of losing a child isn’t just about the moment of death – distress and bereavement begins before the child dies, and extends for many years. And we know the parents we speak to are having real trouble navigating a complex and patchy support system. Parents who have lost a child shouldn’t have to fight to get help – care for bereaved parents must improve.
A joined up approach to commissioning
So how do we improve the situation? Together for Short Lives wants all families to have access to fairly and sustainably funded specialist bereavement support when and where they need it – both before and after death.
The government and NHS England must make sure that universal access to bereavement services is included in funding plans for palliative care.
However, the answer doesn’t just lie with the NHS – palliative care encompasses social and psychological support too. Local authorities, hospices and palliative care services, and dedicated charities play a crucial role in providing support for bereaved parents.
We believe the government should urgently clarify the respective responsibilities of NHS clinical commissioning groups (CCGs) and local authorities in planning and funding care for bereaved families. At a local level, CCGs and councils in England must jointly commission services for all disabled children and young people up to the age of 25. This should include commissioning care for families bereaved of a disabled child, so that families get care which is co-ordinated, regardless of where they live.
The good news is that this problem can be solved – there are already many great, joined up bereavement services and resources available. The challenge is to make sure that this good practice becomes the norm rather than the exception – something that can, and should, be achieved urgently.
Barbara Gelb is CEO of Together for Short Lives
If you’re a parent in need of support our service directory contains details of local services.
If you’re a professional involved in commissioning palliative care services, our free online guide provides help and advice for NHS and Local Authority joint commissioning, including bereavement care.