Imagine the scene. It’s one of the coldest February days for decades, with schools closed and transport in chaos. A little 10-year-old boy is sitting on a bench alone in a deserted white-tiled, ether-smelling hospital waiting area, playing with the toy lorry his mother had bought for him on the way in to visit her husband — his dad — who had been operated on the day before.After several hours, he is surprised to see his aunt. She takes him by the hand to the bottom of some stairs and says to him: ‘Your daddy has just died, and you have to be the man of the family now and look after your mum and sister.’Then, bewildered, he sees his distraught mum holding a cup of strong tea in the ward sister’s office and hears that, despite the pleas of his dad to see him as he lay dying, knowing he was downstairs, he was denied this because of the harsh hospital policy of the day of not allowing children under 16 to visit patients on the ward.That little boy was me, 63 years ago — the day my childhood ended. My secure life in my loving family was changed in an instant to one dominated by the grief of adults, uncertainty, fear and poverty in a single-parent family. Scroll forward 40 years. I’m sitting watching a TV programme by the child bereavement charity Winston's Wish that documents a weekend residential camp for bereaved children. There they meet, often for the first time, other bereaved children. There are games and fun, but the weekend culminates in a time to remember the loved one. Each child is given a helium balloon and invited to write a message to the person who has died before releasing all the balloons into the sky. When I saw that, I wept uncontrollably. I suddenly realised a huge, unrecognised, repressed anger over how I had not been allowed to see my dad to say farewell to him before or after he died when he was brought home to lie in our sitting room before his funeral. Scroll forward again to September 2012. By this time, I had become a children's physician and the first children's commissioner for England as well as becoming patron of the CBN (Childhood Bereavement Network), working with 200 support groups and meeting countless grieving children across the country — listening to their often harrowing stories and reassuring them that they could be successful in their lives, despite tragedy. I'm sitting with Paddy O'Connell, a radio journalist who, like me, had lost his father unexpectedly when he was 11. We are being recorded for a 15-minute slot on the BBC Radio 4 programme You and Yours, sharing our experiences of being bereaved as a child and the impact on our lives. We touched on some difficult issues, including our mutual experience of ‘catastrophisation’ — having experienced an unexpected tragedy as a child, thereafter we were always waiting subconsciously for the next disaster to strike and then having a ‘hyper’ reaction when something did. The programme triggered a massive response to the extent that it was rebroadcast by popular demand. Many people called to seek help for issues they had struggled to come to terms with over many years; older people thanked us for exposing their own feelings of loss. This shows there is a substantial legacy of unresolved grief in adults after bereavement as a child. So what is known of grief in childhood? The statistics are startling — a child loses a parent through death every 20 minutes, and most 16-year-olds will have experienced losing someone close. We know from the CBN that support for children nationwide, already patchy, is now threatened by austerity and restriction of access to CAMHS (Child and Adolescent Mental Health Services) and other support services. Difficulty in raising money for charitable organisations compounds the problem, coupled with the fact that rapidly changing family dynamics are generating highly complex inter-relationships that can be difficult and time-consuming to unravel and support. Despite this, we know from the CBN what grieving children and young people need. Countless close families cope well, but of special importance is the need for primary care and schools to understand the impact of death on children. They should have internal processes, policies and access to expertise for supporting children of all ages. Such expertise includes understanding children’s cognitive development and their concepts of death at different ages, and their thinking on spirituality and purpose in life. Recognising the different impacts of expected versus unexpected death, especially when traumatic or violent, is especially challenging. The needs of dying children themselves have been transformed, not least through the hospice movement for dying children, supported by outstanding organisations including Together for Short Lives. Several centres of excellence, largely supported by charitable bodies, are now established nationwide, though vulnerable to austerity. So, what does all this mean for the BMA and our members? Some important questions can be asked — beginning with how many of our members were bereaved as children? I would expect, as in other caring professions, there to be an over-representation. What were your experiences and how have they shaped your life? My father's death was the impetus as a 10-year-old to declare my intention to become a doctor to ‘stop other boys’ and girls’ mummies and daddies dying’. Is that true for you? Might you be willing to share your insights with bereaved children in your local area, including in schools and health services and voluntary settings? Is it possible you could be seen as an important role model, and might you be prepared to speak out for their needs? Above all, in all settings in which you work with dying adults can you promote ‘Think adult, think child’ — and ask, ‘What is the impact of this person’s death on the children in the family?’ You may be the only person to do so. Children must be supported and empowered to cope with the immediate effects of a death, and in preventing life-long adverse sequelae. These can include educational underachievement, joblessness, fractured adult relationships, adverse psychological and psychiatric consequences, together with poor physical health and demand on primary care services. However, tragedy can be the spur to achievement and success in life and children need to be given hope. We must promote the view that death is part of life and be prepared to talk about it openly. A balance has to be struck in supporting children and families without making it a pathological entity. Early intervention in those at risk may be life transforming. I will be interested in hearing your views in feedback. Useful resources are available at CBN and Together for Short Lives
Sir Al Aynsley-Green is president of the BMA
Moving and meaningful.
Excellent article- , I was bereaved aged 7, when my father died of a sudden heart attack ,
I used to catastrophise often until I trained to be a counsellor and had personal counselling myself .
I now work/volunteer for Cruse a bereavement agency , i understand and support my clients , sometimes it's hard when transference occurs but I get support from my supervisor which helps .
I also get a lot back from my clients . I too hope one day to work with bereaved children.
This is so moving... your comment 'Above all, in all settings in which you work with dying adults can you promote ‘Think adult, think child’ — and ask, ‘What is the impact of this person’s death on the children in the family?..........You may be the only person to do so.' is so true.
I recently left the NHS after 27 years to work for a children's bereavement charity as I wanted to be able to support bereaved children and their families. I was motivated by my experiences in both nursing and midwifery where sadly children's needs when someone died or was dying were often overlooked ......not always, but this was generally the case and through my current role, I find that it often still is .
I was also motivated by my own Mum's experience of the sudden death of her father when she was just 12. She came in from school one day to find a priest at her house, her mother was distraught and she was told her Dad was gone. She wasn't allowed to see him, attend his funeral and nobody talked about what had happened (he had had a massive heart attack and collapsed at work as she found out some years later). Like you, it was years later that her unresolved grief was finally addressed.
I would agree that early intervention in those at risk absolutely transforms lives and hope that as a society we do become more open in talking about death as a part of life and promoting this view.
I would also like to add the importance of saying 'something' to a bereaved child to acknowledge their loss - I always stress this when delivering training or when talking to groups about my role - again, you may be the only person to do so but just a few words can make such a difference.
I am in New Zealand. My partner and my son's dad has just been told he has terminal cancer. I have had to stop work to care for our son and him at the same time. Our son is five. I took him to the childrens' counselling service here called Skylight and we told our son a few weeks ago when he was four. With plenty of play and a trained therapist. I did it because my limited understanding of childhood bereavement seems to be the include the child in the process and tell them the truth always. I am so grateful I had this resource here. It costs $40 per session, and we are now on a benefit, however there may be a chance to get funding from the organisation. Just wanted to share my story on this. Thank you for shining a light on it.
Dear Sir Al Aynsley-Green, I have read with interest your above article, and couldn't agree more. I was widowed 7 years ago, aged 34, when my, also 34-year old, husband suffered a totally unexpected fatal heart attack. He was away with our, then three-year-old son, who was the only person with him at the time. Somehow he managed to get an ambulance there, but his beloved daddy died at the scene. I then had to explain to our children (3 years and 11 months at the time), that their daddy couldn't ever come back. I was flabbergasted when I couldn't find a book to read to them, so decided to write my own. Long story short: I managed to self-publish it with the help of crowdfunding (I was diagnosed with breast cancer aged 37, but am currently all clear, fingers crossed), and it has been a huge success. Four years later, "Is Daddy Coming Back in a Minute?", as well as our second book "What Happened to Daddy's Body?" have finally found a publisher: Jessica Kingsley Publishing. I gave a TEDx talk on the subject in 2014, which can be viewed here: www.youtube.com/watch - I have spoken, and continue to speak at a number of child bereavement conferences, and am working passionately to improve the bereavement support for very young children. I couldn't find a contact address for yourself, but I would love to send you my books (free of charge of course) for you to look at. Will you please get in touch with me, either via my website www.isdaddycomingback.com or via email: [email protected] Thank you for writing such an important and insightful article. With very best wishes, Elke (books written as 'Elke Barber', but now remarried and 'Elke Thompson')
My mother died four months after my birth. I was never told until i was seven and living with my dad and his new wife. I am a nervous, high achieving woman of 63 now, but that loss and the way it was handled left me damaged emotionally in ways that no therapy can heal. I would hope that children are cared for with empathy and gentleness when these events touch them so early.
I am now 46, and even circa 1975/76 in Australia, when my baby brother was treated for leukaemia, we were told nothing and barely allowed to see him, even when he was at home. I guess it was thought that we (me aged 5, my sister aged 6 and another brother about 18 mths), would not be able to understand what was going on, and the sadness of our baby brother's terminal illness. It was all the more heartbreaking to have been denied any visits with him in hospital (hospital policy, no child visitors, even siblings of children's ward patients), during his many stays for cancer treatment, only to be told one day that he had been taken to heaven and we could never hold him again. I think at the time, yes the focus was the adult grieving, but we, the young bereaved were almost avoided - as though people didn't want to make us cry and/or were afraid to talk and cry with us. Your story touched me, because rather than lessen the loss, being denied the chance to say good bye, really has the opposite effect in my experience. We all (all 3 of us) would have cuddled our brother any opportunity would have been given - but the doctors thought our baby brother was not strong enough. Children need support and a chance to express themselves when bereaved - well done to your organisation.
I was very moved when reading your article as it touched a raw nerve in me. My father died whe I was 11 years old. He had been ill for sometime and my mum was 'a rock'. I thought I had dealt with it and was a confident outgoing GP. I felt blessed to live a 'normal' life with my daughters and loving husband and felt very grateful for our wonderful life together until he died unexpectedly and tragically aged 47 leaving my teenage daughters without their wonderful loving dad. Reading about catastrophisation -waiting for the next disaster to happen rang a lot of bells. I attempted counselling via the BMA but was not terrible impressed. Perhaps I should try again. My children rejected all my attempts to persuade them to have counselling and attend local groups for bereaved children and tell me they are ok. They were involved in his 2 weeks in hospital and were able to say goodbye and attended the funeral with their friends. I will read your further resources with interest and tears in my eyes.
My father died when I was 7 and like so many at the time, my mother thought it kindest to the child that they did not attend the funeral. I felt sad and angry about that in adult life, but my abiding memory is of the questions school friends asked me about how he died. I think their anxieties were that if my dad could die, so could theirs.
Three years ago the father of my two children was diagnosed with cancer which ended up being aggressive. Despite surgery, which was initially thought to be successful, he died within a year. My son was 11 and daughter 14 at the time. We had an intense year of hoping for more time, better outcomes and had to adjust to the change in our family. I brought my husband home from hospital to die with us. It was the right thing for our family as we live in a rural setting. We, and our extended family and some friends sat with him in our new 'routine' and lived with him in our living area for the final few weeks. We all adjusted to him spending the days in a hospital bed as we did daily tasks about him. He knew he was loved. We all sat with him when he was unconscious. The children and I have grieved together, talk, laugh and joke at memories of their dad. We haven't looked for any formal counselling. Only time will tell if we managed this alright.
Brilliant, timely and impressive from the president of the BMA.
My life has indeed been shaped by unexpected childhood bereavement, and I am now a mature medical student. But I hope that the way my children have been engaged with the prolonged illness and sudden death of their father two years ago will not mean that they have to spend a lifetime in the caring professions to reconcile themselves with this early experience. Perhaps their experience will inform their work in other ways, or, perhaps, it won't inform their work at all if they are more fully reconciled.
Death is indeed a part of life. My parents absolutely denied this, to their spiritual core, and I was then devastated by my father's early death. A few years later I married an intense and creative man in relatively uncertain health, determined to be fully aware of the possibility of death, and kept it at bay for 25 years, beyond the bounds of all probability. The children were present at every point over the years, a contrast to my own experience: for months in intensive care, for years by the bedside at home and behind the wheelchair, and finally over the weeks his body was at home, coffin open, for family and friends to visit.
One important learning point for us was that child bereavement charities really do understand the reactions and behaviour of bereaved children, and the language of a bereaved family's experience, in a way that so far schools, hospitals and doctors in general do not. That is where the work needs to be done. The charities, with the help of the experienced parents and practitioners could train the institutions. I am happy to help, when studies and family life permit.
Lady Tavener, widow of Sir John Tavener
PS I do hope adolescents are included in the age range of bereaved 'children', they should be, the shock and consequences can be just as far reaching.
Dear Sir Al,
I lost my older brother in 1971 when I was 12 and he 16. He died as a result of driving his motorcycle, as the coroner put it "he gave his life for another" - a woman with shopping on the handlebars of her pedal cycle who couldn't steer properly, who he avoided but in the process clipped the kerb and suffered a head injury, dying 24 h later. My parents returned from a trip away and were present at his death. My parents came home afterwards and my father sat on my bed at 4am and told me I was now his older son - my childhood ended at that point. All of a sudden you learn the big secret of life. You realise you are different from all the other kids, and no way can they comprehend, so no point in having that conversation. You learn that love does indeed mean letting go, and the depth of grief is a measure of how deep that love was.
The day after, as was the practice, they went to see his body but I wasn't allowed to. My mother appreciated that I would have wished to see him and tried to reassure me by saying he only had a bruise on his forehead.
It totally devastated my father who had bought him the motorcycle. Not wishing to add to the grief I kept my emotions to myself, and I remember it being commented that I appeared to be coping well. It had the effect that later in life I overly respected those in authority, such that when I was later confronted with a clinical director who was an autistic psychopath it resulted in me needing 18 months off sick with anxiety and depression - as my GP kindly put it "well, its taken him two years, but he's finally used all your serotonin up". More than one person told me I needed CBT (cognitive behaviour therapy), but after I suffered a severe adverse reaction to SSRIs and wasn't going to 'get better' that way I had the enormous good fortune to be referred to a clinical psychologist who told me I didn't need CBT, but rather EMDR (Eye Movement Desensitization and Reprocessing) which after over 40 years allowed me in one session to process the events of that time. Since when I am not a different person, but rather the person I always should have been. So for all those who question counselling for youngsters (or adults) after a traumatic event and say 'they should just get over it' I would ask them how they would like to be locked up in a dark room for 40 years for something they didn't do wrong? So, yes, early intervention is absolutely critical.
I would not say I went into medicine directly because of my brother's death, but I did have a definite feeling I wished to do something helpful to man or mankind, and useful with my life. I do have a definite feeling of wishing to save people from an unnecessary shortening of their life - given one cannot ultimately save anyone from death. So finding myself, more by luck than judgement, in a career in what has become called cancer genetics is extremely satisfying. I do have a very well developed sense of fairness and hate for bullies which I also think has something to do with my early experience.
You see life in a different, enhanced sort of way, which is an experience only for the few. Something positive that comes out of a negative. You are entrusted with a special responsibility. As a result I experienced something wonderful that would not otherwise have happened. As a clinical student I went out with a midwife. She asked me about my family and expecting the usual somewhat awkward sympathetic response to my brother's death, instead she said nothing and just looked me straight in my eyes and I could see the tears welling up in hers too. I said "you know," and she nodded in agreement. She knew. She said she had lost her younger brother as a child. No more words were necessary. You know. She hadn't just touched my heart, she was in it, and I was in hers. We weren't partners for life and I never asked, but I suspect she went into midwifery because of her experience.
A brilliant article. I would like to add that the children's bereavement charity mentioned in the article, Winston's Wish - are still very much in operation and have a fantastic range of resources and publications to support children and young people who are facing bereavement or who are bereaved. They have a website www.winstonswish.org.uk and a Helpline which is available for parents, professionals...indeed, anyone who is concerned about a bereaved child or young person - can use 08452 030405. They can also provide face to face support in some areas of the country or will always try and signpost families to their nearest source of support if they are not able to provide it themselves.
I wholly agree with Sir Al. I still get flashbacks to my 11 year old self, sent away to stay with a friend when my father was discharged from hospital to home after a heart attack at the age of 42. I was aware enough even then to know that when I was sent up to kiss him goodbye he was dying; something about the smell of his breath and his pale, pasty appearance. I lay awake at nights imaging the scenes at home until I was taken to be told the news by my mother and then bundled away again over the funeral and not allowed to go. Then it was very much the attitude of back to school and push on. I realise it was what my mother thought "was for the best" but I never really forgave her for it and we have had a difficult relationship ever since, although I am now her court appointed guardian and of course I will continue to care for her in every way possible. I've also become a paediatrician. I contrast my experience 50 years ago to recent funerals I've attended where children were welcomed and played a role. I can only think that we have moved on in the right direction. We definitely need to support children, and listen to them, when they suffer bereavement.
Thank you so much for this wonderful article. I agree with you 100%
Bereaved children and young people who have special educational needs/disabilities are a big cohort who struggle to have their grief acknowledged and supported. Having been a SEND teacher for over 20 years I am now trying to support these individuals by training the people who work with them.
Sarah Helton www.backpocketteacher.co.uk