Julie Bailey rarely allows herself to relax. If she does, the memories come flooding back, and she really doesn’t want to go there.

‘There’ is the ward in Stafford General Hospital where her mother, Bella, died in 2007 – one of the hundreds of elderly, hapless victims of the failures in standards of care and leadership in the now infamous Mid-Staffordshire NHS Foundation Trust. Julie, a founder member of the patient and family group Cure the NHS, has been campaigning with fellow bereaved relatives for five years to get a full public inquiry into what went wrong at the hospital in the years 2005 to 2008 and why so many patients died before anyone in authority took any action.

‘I haven’t grieved for my mother,’ Julie says, bluntly. ‘I try not to think about her. She comes into my mind and I have to block it and then it comes over me when I least expect it, when I let my guard down. Then I’m back on the ward with mum again. It’s been over five years and I can’t think of a moment when I was happy since she died.’

Jim Swire was propelled into the media and political limelight when a bomb blew Pan Am Flight 103 out of the sky over the Scottish town of Lockerbie on 21 December 1988. His daughter, Flora, was among the 259 passengers and crew who died and Swire, at the time a GP, has spent the past 25 years fighting for the truth about what happened to be revealed by the UK and Scottish governments.

‘I don’t remember much about the initial few days or weeks. I was extricated from the numbness and horror by anger and I have been driven by that anger ever since – anger at the deep incompetence in the establishment, here and in the US, and the realisation that our government hasn’t looked after its citizens and is hell bent on concealing the way the disaster was allowed to happen,’ he says.

Linda Hurcombe’s daughter Caitlin took her own life in 1998. Caitlin wasn’t depressed, Hurcombe says, but had asked her GP to prescribe her an SSRI antidepressant; she’d read about them in a magazine when she was visiting the US (where direct advertising to the public is allowed) and had heard that they helped you lose weight. Hurcombe says the drug’s side effects – emotional numbness combined with a gnawing restlessness – played a part in propelling a young woman with no previous suicidal tendencies to hang herself.

Driven to act

Hurcombe threw herself into the international campaign to force the pharmaceutical industry to come clean about the dangerous side effects of these new, allegedly wonder-drugs, particularly for young people. ‘My prime motivation was to prevent it happening to other people. I didn’t want anyone else to have to feel like I did,’ she says. ‘I knew that nothing would help me, so I decided to carry on in the only way I could, using my skills, which were in campaigning and writing. I knew nothing about SSRIs then but there was a point when it turned from a personal tragedy into an international iniquity and I would say I was galvanised.’ A writer and college lecturer by profession, she wrote Losing a Child, a book for fellow bereaved parents about living with that loss.

Jim Swire says he needed to act; he couldn’t sit with his grief. ‘This was my way of coping and it still is. It’s how I survive and will remain so until the powers that be cough up the truth,’ he says. And in all he does he is guided, he hopes, by a sense of what Flora would have considered right. A medical student, she was about to take up a postgraduate place at Cambridge to finish her studies in neurology. ‘I needed to behave in a way of which Flora would have been proud, to find the truth but also to behave honestly. But it has been difficult to say how much has been justifiable,’ he admits frankly. ‘My wife, Jane, realised early on I was going to have to do this, but that didn’t give me carte blanche to lay about me to the detriment of my family and others.’

‘His way wasn’t my way,’ Jane Swire says. ‘I don’t have that drive. I just tried to keep going for everyone’s sake. I wasn’t anxious to discover the how. I think it was helpful for him, but it wasn’t my way of coping. What has kept me going is, at its most basic, that not to would have been worse, wouldn’t it? We have two surviving children who have a future and we have grandchildren. I just tried to cope and to do the best for the family that we have left.’

Julie Bailey says she was primarily driven by guilt. ‘I feel terribly guilty about what happened. We all do. My guilt is that I let it happen. I feel it happened under my nose and I couldn’t do anything about it. I colluded with the staff. I made friends with them and tried to get favours that way. I feel now I could have put a stop to it and perhaps Mum would have been alive today. If I’d been as strong then as I am now, I might have been able to do something to stop it.’

She says the campaign saved her. ‘It allowed me to focus on something else. I would be in a very bad place if I hadn’t had the campaign. Something took over me when I lost Mum. I couldn’t sit down. I just kept walking, walking.’ When she tried and failed to get the hospital or any other organisation to do something to help the elderly patients left behind on her mother’s ward, she realised she had to act. ‘I thought, I can be crushed or I can do something myself. It was anger. I had a mission for Mum to uncover what happened. I lost her on 8 November and by 20 December the campaign had been launched and I started to get letters from other people saying the same things had happened to their loved ones and I knew I had to be the strong one for all these other people, to get the truth out.’

Fear of grief

Colin Murray Parkes is a leading figure in the bereavement care world: a consultant psychiatrist, Life President of Cruse Bereavement Care and author of numerous papers on bereavement. This is, he believes, a natural response to untimely death, even if writ large. ‘Bereavement is a time of the most enormous psychological pain we can ever experience. It’s natural to think, “Who did it?”. And where the bereavement is culpable, it is understandable that people will seize on that as something they have got to put right.’

As a consultant psychiatrist at the Royal London Hospital, he found himself often called on to help deal with complaints from people who felt their loved one had died due to failures in their care. He describes one client, whose sister had died in the hospital. ‘Her case hadn’t been handled well. Nobody had listened. She received a fair amount of defensive aggression and was made to feel like an unreasonable child. She arrived clutching a letter from the Ombudsman in response to her complaint. She hadn’t been able to open it. We talked about what it might say and she said, “But he might agree with me and that would be the end of the line. There would be nowhere else to go.” And she burst into tears. I think she realised at this point that what she wanted was her sister back. She had been afraid to grieve; she feared that if she started grieving she would lose her sister all over again and her anger helped her to avoid the grief. When she did start to grieve, the anger diminished and she was able to start getting on with her life.

‘That is why anger can be an alternative to grieving: as long as we have a crusade, the person lives on and we are keeping his memory alive by fighting for a cause.’

But that is not to say that fighting for truth and justice is always a pathological response to bereavement, Murray Parkes emphasises. ‘There are some crusades that really need to be fought. There were occasions when a client decided to drop their case and I rather wished they hadn’t. They had drawn attention to a problem that probably ought to be put right and my therapy had reduced their anger so they didn’t go ahead with their complaint. But it was their decision to make, not mine.’

Sue Marshall, a psychotherapist who specialises in bereavement and is a supervisor and trainer for her local branch of Cruse, agrees. ‘Anger is common in bereavement and it can potentially be a healthy response to death,’ she says. ‘If people have a very obvious focus for their anger, that can be quite therapeutic. Anger is quite energising. It gives people a sense of doing something: they can’t bring the person back to life but they can channel their anger into raising money for hospital equipment, say, or campaigning to raise awareness of road danger.’

Linda Hurcombe set up the Caitlin’s Kickstart Award, which funds local young people to go to college and is now in its 12th year. ‘That’s about continuity and community commitment to our youngsters. I am very proud of that, seeing young people go on into higher education and have opportunities they might not otherwise have,’ she says.

Jim Swire believes ‘something “bad can itself be “good” in that it may also become something in which you can invest worthwhile effort that may benefit others. It then becomes a positive “good” which can be dedicated with honour to the memory of the one you’ve lost’. 

But the anger may also be about fear, Sue Marshall points out. ‘We find it hard to see ourselves as victims of fate, to accept that things happen to us that are outside our control. If a death is sudden or unexpected, we want an explanation. That is at the heart of bereavement. But if there is no resolution, if you can’t get answers to your questions or your concerns are unresolved, that is when a desire to seek justice may become pathological. And for some it may be a way of holding onto the person: “If I stop I would be letting him go, I would be moving away into a life of which he is not part” – and that may be too terrible to imagine.’

Channelling anger

June Allan argues that counsellors have to have an eye to the wider, social context of the person’s life; their anger may be a very understandable response to an unbearable and unjust situation. Senior Lecturer in the School of Global, Urban and Social Studies at RMIT University, Melbourne, and a former bereavement counsellor and advocate, she is currently researching grief and trauma among forced migrants.

‘There’s a gulf between the ways in which anger is considered in traditional counselling and in advocacy and activism and the gulf is growing,’ she argues. ‘Counselling practice is becoming more and more individualised, manualised and personalised, with little regard for socio-economic and political context. But if individual expressions of feelings such as anger are perceived as personal issues when the source of the anger may relate to social injustices that equally affect others, you end up problematising and personalising the anger. There may be potential to channel it constructively to address injustice in some way. Advocacy and social action can be very useful tools to support grieving individuals who believe they have experienced grave injustices.’

Damien McNally’s father was murdered in The Troubles in Northern Ireland, when he was just a baby. Very recently he learned that someone was being investigated for the murder. McNally was first a client and then a member of the board of directors of Wave, a charity that offers both counselling and advocacy to people bereaved in The Troubles, across all religions and communities. He grew up in the shadow of his father’s unsolved death and chose to research the experiences of people like him, who were bereaved in childhood and adolescence during the Troubles, for his Masters degree. ‘You can’t deal with this therapeutically, in isolation from its context,’ McNally argues. ‘I went through counselling and I found it very useful but then you have to go out into the world again. It was only when I did my research that I realised that the fact no one had been brought to justice for the deaths was such a big issue with so many people like me. Their questions had never been answered.’

June Allen argues: ‘The organisations and institutions have to be held to account on behalf of the bereaved people affected, so that it’s not just left to the individual bereaved, who is already burdened. They need to be linked up with others with similar concerns and experiences, if they wish, to foster collective action and energy.’

INQUEST is a charity that supports bereaved families through the inquest process when a loved one has died in the custody of the state – in mental hospital, police custody or prison. ‘We see people who have suffered a double traumatisation, by the death and then by the investigation process. A lot of the families are experiencing complicated grief and shock and are wanting answers to their questions,’ says co-director Helen Shaw. And it can be a major problem for families when their legitimate anger about poor treatment or failure of care is mistaken for the anger of grief. ‘Obviously the two are inter-related, but these families have legitimate anger; it isn’t a symptom of their grief.’ Not all counsellors understand this, she says. ‘We need a network of grief counsellors with this experience and expertise, just as we have a network of expert lawyers.’

Simply being with others who have suffered the same loss can of itself be tremendously affirming when all around are people suggesting that maybe you aren’t in your right mind; that it is the grief that is driving your demands for truth and justice; that you should ‘let it go’. ‘There’s no doubt in the world that meeting other bereaved parents made all the difference,’ Linda Hurcombe says. She travelled to the US to meet a group of other parents whose children had taken their own lives after being prescribed SSRIs. ‘You are encouraged to feel that you are a mad, bereaved parent. I hadn’t lost my intelligence and skills, my sense of balance; I’d lost my daughter,’ Hurcombe points out. 

‘We met with the other families and that was difficult but the good thing is you don’t have to explain: you know where you all are. You just reach out and give a hug,’ says Jane Swire.

For Julie Bailey, the solidarity of the Cure the NHS group is a huge part of what keeps her going. She too felt that the hospital dismissed her response as that of a grieving relative, not as a serious issue that needed answers: ‘We are a really close-knit group. We have never fallen out. We have just put our heads down and gone for the same thing.’

Moving on?

McNally wants his father’s death investigated and the suspect brought to justice, if possible. But there is a tremendous pressure in Northern Ireland now to ‘move on’, he says. ‘People here are living in two different worlds. There are people like me, my mother, my sister and other family members, still wanting to know what happened, and there’s people who are saying you must forget about the past and move on.’

Linda Hurcombe talks about ‘moving with’, not moving on: ‘My view of life is that you carry with you all the events that have happened to you. I sometimes wonder about people who choose the “letting go and moving on” way of dealing with tragedies; what happens to the experience? Do they remember their dreams? Caitlin comes into my dreams these days and she is in a good place. I feel blessed by that.’

Jim Swire says he has tried several times to step away from his pursuit for truth; it just hasn’t been possible. ‘It finishes when I am satisfied that the establishments of England and Scotland have been reasonably honest about what they know about what really happened and have passed that information to the public.’ Asked if he can imagine a life without his crusade, he says quite simply: ‘We desperately miss her. The one thing above everything else would be a campaign that would result in her miraculously appearing, but that’s not possible and this is the only way I have been able to muddle through.’

Julie Bailey thought her campaign was close to being over, only to be ‘kicked in the stomach’ by the decision by Robert Francis, Chair of the Mid-Staffs inquiry, that no one should be held personally to account for what happened. She says she can’t step away now; she owes it to her mother, herself and to the other bereaved relatives in Cure the NHS. ‘We have all put our grieving on hold to focus on doing what is needed. If I stopped now the grief would just rush in. It will only end when we get accountability and we are certain that other loved ones will not have to suffer like ours did.’

How would Sue Marshall respond to someone who was making this kind of choice? ‘I would ask them what it gives them, what are they hoping for, what would their desired outcome be, is it realistic – and what if you don’t get it?’ she says.