Seeking Support: Bereaved children are being failed in modern Scotland
“My dad became ill with cancer when I was 13,” Stephen Smith tells Holyrood. “He had esophageal cancer and he had an operation, it was all removed and everything was going well. And then he was diagnosed with lung, liver and stomach cancer because the cells were still there. About a week later, my mum was diagnosed with a brain tumour. Both parents had cancer at the same time.
“My dad became ok, he was able to live with it and is still here today. But my mum had a brain tumour operation to get rid of it, a year later it came back, she had a second operation, then had a stroke on the operating table. She was them completely paralysed down the left side for a year and two months, when she passed away from seizures.
“It was a whirlwind of events over about a four-year period. Sorry, really quick, really brief, but that’s the summary.”
Smith, now 23, smiles uneasily, waiting for my response. It’s a story he’s used to telling, quickly summing up four years of being a carer and the eventual death of his mother, Karen, when he was 17.
Carefully avoiding discussion of any emotion and sticking purely to facts, it’s a trick many who suffered a childhood bereavement know well. It’s about being able to mention that someone has died without breaking societal taboos.
“I think you get very good at talking about the situation versus how you feel about the situation. They are two very different things,” Smith says. “If you ask me what happened, I can tell you exactly, give you a short story or the long story. If you ask me how I feel about the experience, that’s very different.”
The difficulty of talking about death and grief was a common finding of the new Growing Up Grieving report, delivered by the National Childhood Bereavement Project last month.
The project has been led by Denisha Killoh, whose own mother Pamela died when she was 14, for the last two years. Commissioned by the Scottish Government, children’s charity Includem spoke to young people who had been bereaved before age 26, as well as services designed to support them, in a bid to “ensure Scotland becomes a nation that holistically supports all children and young people who are, or will come to be, bereaved.”
Killoh says: “When I speak to young people with lived experience, more often than not, there’s that shared expression of, ‘there’s nowhere to turn’. Some young people feel like there is nothing out there, but we can also see that there are lots of great services.
“If there are services out there, how relatable are these children and young people, and how accessible do they feel? It’s not to discredit anyone, it’s not to say children and young people are not doing everything they can be doing at in that situation to find support, but it is saying we’re going to have a look and see how [services] relate to them.”
The report makes seven recommendations to the government, ranging from teaching bereavement in schools to practical and financial support after a person dies. One call to action is to overhaul the advice given after a death, warning the current documentation was “too long, too complicated and used terminology that they did not understand”.
Killoh says this is partly because of a lack of recognition of the responsibilities many young people take on after a death.
“There’s an assumption that when a parent or carer dies, there’s other adults in the family home and that the children and young people will be cared for.
“But the report shows that actually that’s not always the case and there is that step to make sure we ask these children and young people, what are they struggling with and what they’re taking on board. There were young people that I spoke to that were taking on funeral costs. They were planning funerals by themselves. They were dealing with becoming executor of wills, power of attorney, these really complicated things.”
And dealing with this type of ‘death admin’ can also cause a delay in being able to process the death. Smith explains: “Everything kind of fell on me and I didn’t have time to process that it happened at all. I was the one that had to tell family, like phone my mum’s mum and tell her that she had passed.”
Thankfully, Smith’s experience was made a little easier through the help of a young carers group, with which he was involved in the years prior to his mum’s death – but he feels he would have benefited from proper bereavement support.
“I wasn’t caring for anyone, it made me feel a bit fraudulent, but [the carers group] still recognised that I was a carer, and whether it was before being a young carer, during being a young carer or after, they realised I still needed support. And if it wasn’t for that, I think my life would have taken a very different path. There was no alternative for me.”
Children’s commissioner Bruce Adamson says bereavement must be treated as a children’s rights issue for this reason. Without proper support, grief can have lifelong negative impacts.
He says: “Bereavement and grief needs to be thought about as a lifelong thing and the way in which we, as those in power, respond to the needs of children and young people both in the preparation for bereavement and at the time of bereavement and afterwards is really, really important. The response that we take to it can have significant consequences in terms of positive experiences for those that have someone close to them die.
“Not receiving that support and understanding can be hugely damaging and I think particularly within educational settings, it can really set someone off in a path where they disengage from education, where they’re not getting the support that they need, and that that can be catastrophic. It’s the same in mental health terms; early and effective intervention and going to mental health support can be lifesaving. And if it’s not there, then it can have really significant consequences.”
For this to happen, Adamson says it’s imperative to bring conversations about death “out into the open”.
Shifting societal attitudes is a slow process, but one the report says is necessary: “This collective effort must be coincided with a commitment from the Scottish Government to view grief as a national priority. Without this commitment, we will continue to have a disjointed approach to bereavement that fails to holistically meet the needs of those who are grieving.”
Adamson agrees, and he notes little has changed for children and young people facing a bereavement in the last 40 years. He lost his own brother when he was young and he says the report “all resonated with me”.
He adds: “Reading this now about children’s experience, some quite recent, with exactly the same issues [as I faced] when we are 40 years on does make me think of the real need to tackle this and implement the recommendations from this report and bring this out into the open because we probably don’t seem to have improved very much.”
In particular, he related to the sections in the report where young people felt excluded from the grieving process. “You’re in this place where nobody seems to even recognise that you’re going through something. Nobody is really talking to you about it,” he says. “That for me was really difficult. Reflecting back, it was because they were wanting to protect me – but it had the opposite effect of just feeling very isolated and alone.”
Mathilde Scott, 23, has a similar experience when her dad died from a head injury after slipping on ice. She was 14 when he died, but she says for a long time she tried ignore her grief.
“I remember thinking, I’m just going to pretend that I don’t have a dad so that I don’t need to experience that kind of pain. I was very emotionally numb. And I think it came out a lot as anger, I was very angry throughout my whole high school years.”
That anger made her feel even more isolated out of fear that she wasn’t grieving correctly. Meeting other people through this project, and her Masters’ dissertation on parental bereavement, has finally put that worry to rest.
It created “a sense of belonging and community, like a sense of relatability with people that you’ve never met before, that understood your emotions, your responses, your experiences with this type of grief and knowing you weren’t alone and that you weren’t being weird because you were angry and not crying”.
While Scott is unsure whether she would have been able to talk about her feelings at the time, she says having the option is important.
“I feel like having people continuously reaching out and being like, ‘I hope you’re OK’ or ‘there’s this safe space if you want to talk about it’ or even being provided with information that I could take home and read by myself would have been beneficial… That idea of befriending, having someone that you can go to, knowing that there’s a safe space if you’re feeling angry or upset, those kinds of things, I think that would be important because I didn’t have a relationship with anyone that I could have spoken to.”
Like Scott, Killoh also found the process of the project incredibly nourishing because it allowed her space to reflect on her own feelings. She hopes other young people involved feel the same.
“[When] I started the project, I didn’t really know anyone else who had been bereaved, particularly their mum or primary caregiver. And now I know so many people.
“It’s experiences like that, just for young people to know they’re not alone. It’s a very isolating thing, to be that young and going through probably the biggest thing you ever go through in your life.
“The rest of your friends at school or college, university or your work, or just in your life, are talking about what they’re going to do at the weekend, but you’re thinking about going home to a house where the person you love isn’t there. I think to just give that legitimisation to people, to know that, actually, you’re not alone in this, that is so important.”
Ultimately, providing better bereavement support services for young people comes down to making it ok for everyone – children and adults – to talk about death.
Killoh says: “In general we don’t have the conversation about dying, death or bereavement as society and I think that’s reflected when you look at the national priorities for Scotland, you don’t really see anything about bereavement, even though bereavement is the one given that will affect us all in our lives. I think that really speaks widely to like how services interact and how they’re structured. There isn’t that coordinated strategic focus.”
And if we don’t break the taboo about talking about death, that can “manifest itself as a crisis” in children, she says.
“But there’s so many different interventions that could be done before then. Sometimes it’s just a simple conversation, asking ‘how are you? Do you want to talk about the person who died?’”