Reform Scotland

Advice & support are needed when life ends, as well as when life begins – Alison Payne

Earlier this month Sue Ryder & Hospice UK published a report looking at Bereavement support in Scotland.  The report suggested that 53,000 people could be missing out on support that could help them during these tragic periods. I wasn’t surprised to hear this.

There was only six years between the birth of my first child and the death of my husband. That gave me an interesting insight into the different way we support people to cope when life begins, versus what happens when a life ends.

It may seem odd but there are a number of similarities between the two very different scenarios: the emotional and financial upheaval; feeling isolated; having to adapt to a new normal; thinking no-one understands. “Widow brain” for me was also very much like “baby brain”.

Yet the difference in support offered is stark.  Obviously, when you have a baby a great deal of the support provided is focused on the child and checking developmental progress.  However, new mothers are supposed to be given a check for post-natal depression and a chat about how they are feeling with a health care provider.  They should be provided with information about child benefit entitlement and directed towards peer support and post-natal parents groups.  The Baby Box also contains important advice about depression and anxiety.

There is no equivalent when a loved one dies. There is no central provision of advice. No obvious point of contact. No explanation of how to find emotional and financial support. Crucially, there is a lot of help out there, but knowing where and how to find it, or even who to ask, is no easy task. And that support varies dramatically based on where you live and the nature of your loss.  

My husband died in November 2015.  He died and I was lost.  

Suddenly, at my most vulnerable, I had lots of organizing, notifying, sorting and responsibilities to deal with.  I was also helping my young children cope with the loss of their dad and dealing with my own grief.  There is nothing quite like going from a primary school playground to a funeral director of a morning.  Added to that, people don’t like talking about death and grief, so an already isolating and devastating situation is made worse.  

When you register a death there is a service provided where government departments such as the DVLA and DWP are notified automatically and is a huge help. But beyond the legal requirement to register his death, I was left in the dark and alone.  I knew virtually nothing about what emotional and financial support was available. 

No-one told me about Widowed Parents’ Allowance. It was 18 months before I realised I was eligible for child tax credits.

I received fantastic support from my GP and Maggie’s Edinburgh, who in turn told me about Widowed And Young – a wonderful peer support group for people who lose their partner aged 50 or under. 

But what of my children? They were grieving too. 

But what about legal rights?  What rights and responsibilities did I have?

But what about banking?  We had a joint bank account?  What about his mobile?  What about his credit cards?  What about insurance – life/car/home?

And not forgetting, in this online/digital age – what about social media accounts/ passwords?

There are so many questions and I remember remarking to a number of people at the time that if I was struggling with everything and was an otherwise fit and active 36 year old, how would a more vulnerable or elderly person cope? 

Crucially, at every turn I found support, but I had to go looking in the dark for it.  There was no central point of information. No link up.  Nowhere could I go to simply find things out. 

I was helped by the fact that for one month we knew Jude was going to die – we had some time to sort things out.  Time to discuss, to plan, though that was only because of Jude’s incredible strength and ability to face his situation.  But many deaths are sudden.  Equally, many loved ones will not have planned and talked together.  I have heard it said that grief is like a tsunami hitting you.  You may be facing it and know it is coming, or you may have your back to it and be caught unawares, but it will hit you either way.    

The Scottish Government has stated that it wants to address loneliness and isolation in Scotland.  With the devolution of certain welfare powers it also wants to reduce funeral poverty.  I believe providing a ‘Bereavement box’ of sorts could help with both those policy aims as well as helping guide people when they are at their most vulnerable.  After all, if people do not know what help is available, how can they access it?

A bereavement pack could be issued when a death is registered and include information on issues such as: benefits; local bereavement groups; counselling; peer support groups; rights for time off work; rights and responsibilities for family and executor; a check list of organisations you should contact following a death; even charities and organisations which help sort out possessions.  There are many possibilities.  Different sets of advice could be put together depending on whether the deceased was a parent; spouse; child; or friend. 

There is financial support available.  There are incredible support organisations.  But you need to know about them.  Sitting at a computer Googling bereavement support was way down my to-do list when all I wanted to do was hide from the world.  

I believe we need to help people cope with the loss of life, just as we help them when life begins.

Alison Payne is Reform Scotland’s research director but writes in a personal capacity as widow.