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Why We Need to Reconsider How We Engage With Bereaved People

05/07/2015 23:46 BST | Updated 05/07/2016 10:59 BST

Bereavement and grief largely remain taboo subjects. The result is that it can be difficult to know how best to deal with these inevitable aspects of life - meaning we need to reconsider our approach.

Losing someone you love is difficult enough, living without someone you love is heartbreaking enough, living day by day is exhausting enough without the added frustrations and torments contributed by those who exclude and patronise those living with grief.

The patronising comments and exclusion are usually unintended, I know. That knowledge does not make the sting any less, though.

In the 15 months since my baby son Hugo died at the age of 35 days I have been told I am a 'conversation stopper'; been told 'God will give me another baby'; seen the fleeting moment of terror in a stranger's eyes when I have told them about my son.

Eggshells have mounted up around me because death, grief, bereavement is put in to the 'too difficult' pile.

No one is perfect. We can all make faux pas, we can all blunder and put our foot in it. This isn't about berating people for trying yet not quite getting it right.

This is about reconsidering how we engage with the bereaved - as individuals and as organisations.

I was frustrated to learn that bereaved parents are excluded from the Picker Neonatal Survey. Perhaps that is from a point of view of being sensitive - but it is patronising. As described in this post, a significant portion of views is therefore missing from the results, so how can services know what they do well, and what needs to be improved for bereaved parents?

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In June 2015 as part of my #MatExp action I encouraged everyone to #saytheirname as a way of helping people overcome their reluctance to talk to bereaved parents about their baby. The idea behind that is that parents can then talk as much or as little about their baby as they wish.

The point is to put the ball in the parents' court. Put your own momentary discomfort to one side. Let the parent make for themselves the decision to talk or not talk about their baby.

I have also been exasperated by being told I was not shortlisted for an unpaid role because the panel felt there had not been enough time since Hugo's death, and I was 'not ready'.

They prefer for parents to wait at least two years after the loss of their baby, as part of their duty of care. Anecdotally, I have heard of other bereaved parents' offers to use their experiences to help others being declined by other organisations for similar reasons.

A duty of care is important, of course, especially when dealing with such sensitive issues.

The trouble with such a policy is that it forgets people are individual. It forgets that grief ebbs and flows over time, meaning judging a bereaved person's time since their loss is impossible.

There is also an issue with the concept of being 'ready' - it can mean 'completely prepared'. I would doubt any bereaved parent would ever feel completely prepared, emotionally, to talk about their experiences. It is a part of our lives, not something we can detach ourselves from.

'Ready' can also mean 'duly equipped', 'willing', and 'inclined'. It is these definitions organisations should focus on when considering offers by bereaved parents to provide support to others.

To broadly generalise, grief does change over time. It doesn't get 'better', it gets 'different'. But it never goes away. Ever.

We need to remember that grief can be like floating along in an ocean. Sometimes it is placid, sometimes it is a tempest. We need to remember life in general can be like that, too. We none of us know what tomorrow, next week, or next month will bring us.

We need to be able to ask open questions, listen to the responses, and take account of individuals' situations.

We need to remember that there is no right or wrong way to grieve, no time limit on grief, and that everyone's journey is personal.

My heart is irrevocably broken. But I get up. I am strong, I am a fighter. I campaign in Hugo's memory.

It's vital to say that many people - family, friends, and strangers alike - have been absolutely incredible in their support and making sure we know that Hugo will never be forgotten.

I have used the pain of my experiences and put it towards positive, constructive use. I have not become bitter and angry - but with such frustrations, assumptions and being patronised in the way I can see how it could be possible to become bitter and angry.

People who are bereaved often get on with things. We have little alternative choice. Sometimes, we have need a bit of extra care and consideration (on a low day, or anniversary, say). But you know what? That makes us no different to any other human being.

We should treat everyone with kindness, empathy, compassion and respect. We should respect everyone's individuality. We should understand that life happens. Death happens. That life is a part of death.

Perhaps if we did that there would be no need tread on eggshells, or to remind people to #saytheirname.

And by not having to constantly fight to feel heard, or worry about other people's feelings bereaved people would have one less weight off our mind, one less thing to tire us out.

That is why we need to reconsider how we engage with bereaved people.

Leigh Kendall also writes at Headspace Perspective.