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.
Comments
I created a legacy in memory of my son we support parents through miscarriage/stillbirth/neonatal death from before or after they deliver helping them make memories with their babies we provide burial outfits for babies from 14wks gestation any help or support they need right through the weeks months and years ahead bereavement services are in desperate need of change every parent i believe should have the choice who they would like to support them whether it be bereavement nurse or an organisiation made up of other parents that have been through a loss and understand their pain and importance of making memories the main problem is if a hospital does have a bereavement nurse they are reluctant to let anyone else support in my experience they think of other parties as a threat so therefore parents dont get a choice of services its sad we should all be able to support together for every family in need
My brother was diagnosed with Edwards Syndrome (Trisomy 18) in the womb, at which point my parents were told about how he would be "incompatible with life" and given the statistics which show he was unlikely to live long. Despite the doctors' negative attitudes towards him, and my parents having to battle for basic rights like resuscitation, never once were we offered counselling as a family. My brother ultimately passed away at under a week old and my parents were offered counselling, which is a brilliant service, however I can't help but think the whole family should be offered counselling, as the siblings (especially much older siblings) are also immensely effected. How do you explain the death of a baby brother to a toddler? How does a person entering their teen years reconcile it with the rest of their life? How does a uni student pick up the pieces that are left? Yes parental counselling is immensely important, but there's more to the picture.