Marina Copping is Clinical Information Manager at NHS Lothian. Marina has been chosen to receive a Child Bereavement UK 21 Champions Award in recognition of her dedication to improving outcomes for bereaved children within the NHS.

1_4e-marina-copping-250x333I’m a health visitor by background and used to work in nursing with children with cancer at the Royal Marsden Hospital. My work at NHS Lothian essentially entails ensuring that all NHS services meet the needs of children. I report directly to the Child Health Commissioner – there is one in every Health Board area. I became involved with Child Bereavement UK on behalf of NHS Lothian and was aware of the charity’s work in Scotland through the City of Edinburgh Council. NHS Lothian works collaboratively with partner agencies aiming at all times to keep the wellbeing of children the central focus of our endeavours.

I fully support the need for improvement in meeting the needs of bereaved children and their families and in their long-term outcomes. There is evidence that we don’t ‘do’ grief, bereavement, loss and trauma well. It’s dealt with briefly at the time, then cast aside; it’s not always part of a long-term dialogue in our communities. Child Bereavement UK’s work chimes with me because I am committed to the care of families and I believe that the need that the charity is trying to fill is important.

It is important that we give families and children different choices and the model that Child Bereavement UK is proposing, to educate schools and teachers about the need for dialogue and communication with children about their trauma, loss and bereavement, is essential to changing the culture. Having discussions and normalising grief is important, and Child Bereavement UK has a light touch and approach which is appropriate. It is not always necessary for children and young people (although it is for some) to access specialist services and groups when they can be integrated into the care we already provide. Death and grief are part of life, grieving is part of healing – and it is with their grieving that we wish to support them.

I think one of the big issues we face in the NHS is that, when death happens, the needs of the extended family may be overlooked. For instance, if a dad dies in a motorcycle accident, the child might be at home or with friends and their needs at the point of care are unseen. That child then has to face going back to school, with no bereavement support. It might not be a direct relative that dies, it might be an uncle or an aunt, but they still suffer loss and trauma. It’s all about ensuring that there’s linking up and shared working, so that we can improve the care children receive. I don’t believe for one minute that any member of staff would ever knowingly leave a child suffering – that’s not my experience of the NHS – but they may not necessarily think of the children involved. There needs to be some kind of slogan for adult workers so that they remember to think of any children who might be affected. When it comes to child protection, drug abuse and mental health, thought is given to whether there are children in the family and whether there is anything else we can be doing to support them. These services are easy to contact. Accident and Emergency departments are very busy and we don’t expect them to do the job for us, but they do need to highlight and communicate the joint working that is needed in situations where children may be affected by an incident.

In the NHS we work across all services: health, education, police, voluntary agencies and social services. Children are at the centre of these services, but it just happens that we might be the only ones who know about a loss, for example, that a grandparent has died. It’s about working out how we work together to make sure we’re supporting all children. Sometimes it’s not straightforward – families have a right to privacy, and we might ask, ‘Do we remind the parents to let the school know about the death, or do we tell the school ourselves?’ All things need to be considered and we all need to work together.

I know of a boy whose mum died; when he returned to school there was a perception that he wanted life to be normal and nothing was to be said. One of his classmates said to him “I’m so sorry to hear about your mum.’ But the boy was embarrassed so teachers advised the class that at the child’s request they should not discuss the loss with him – so it simply wasn’t mentioned any more. When I see his social media pages, I notice that whenever things go well, say he scores the winning goal or someone upsets him, he mentions his mum, many years on… The school staff were very kind – their intentions were good, and they would have done anything to help; they fundraised for the charity that mattered to him and there were other acts of kindness. However, although the teachers were compassionate and helpful, I’m not sure anyone ever went back and asked him, over the months and years, how things were for him. We would do things differently now; for example, the pupil’s mum would be acknowledged and his bereavement talked about, and at a later date, someone would follow up with him. With the right knowledge and skills, we have the chance to deal with bereavement in schools better so that others might have a different experience.

The work Steve Sweeney at Child Bereavement UK has started here in schools, educating teachers and working with them to have named people who touch base with a child after a period of time, is really good because it normalises grief and loss and allows people to talk about it in the course of a normal day. Grief should not be something you have to go away for – you should not be labelled as having a mental health issue just because you’re bereaved. A great number of children are getting referrals to mental health services when they could actually be simply categorised as having suffered loss or bereavement. There’s a tendency to turn grief into a mental health specialism, which is a shame – grief is a normal response to death.

By being involved with Child Bereavement UK we have created the beginning of a culture change. We are all talking about it – everybody who has heard about it or engaged with it wants to know more and believes it is a useful programme. I think it’s really something we, as a society, don’t do very well. There is a need to change that and improve outcomes for children. Badly managed grief is not good for a child’s wellbeing – it lives with them. The work of CBUK is important because we need to change that and we need to invest in it. The Scottish government is trying to do that, and if this model is proven to work in a couple of sites, it would be my dream to see it implemented in schools in Scotland as a core unit. It won’t happen overnight – it requires a change in culture. But nobody could argue it is not a good thing.

I am so humbled to receive this award. The day I found out, I had been at the Scottish government discussing a potential secondment to a new job relating to electronic child health records. I phoned my husband on the way back to the office and told him ‘I’ve just been offered a secondment but I don’t think I want it – I just want to do a good job in my current role.’ When I got back to the office, there was the letter from Child Bereavement UK telling me I had received one of their 21 Champions Awards. I was so touched – it just proves there was a reason for what was in my head and it made me realise what really matters to me. That little letter reinforced what drives me – caring for children – and I know I can do that by being engaged in this kind of work. It was so lovely and it just shows you how important it is to listen to your inner voice.

Steve at Child Bereavement UK does a really good job – it’s not always easy, as there will always be people who are not ready for change. A little boy who had a terminal diagnosis had a Facebook page where people were posting things like ‘Keep going!’ ‘Keep your chin up!’ ‘Keep smiling!’ I just wanted to say ‘You don’t need to smile, you don’t need to keep your chin up – if you need to bow your head and weep, just do that.’ I think it’s a very Scottish thing to say ‘You’re doing so well, you’re so brave, keep going!’ but at the end of the day grief is so painful. When I went to look what was on the boy’s wish list for fundraising after he died, it was for counselling for other children, brothers, sisters and parents. It made me think he must have felt that he didn’t get that for himself. Ensuring that dying and bereaved children get the support they need is what makes me tick. To know that Child Bereavement UK clocked that in me, makes me feel humbled.