Media Blogs "Beth's family and friends lost the chance to say goodbye" 20th November 2017 Aldyth Smith discusses what happened to her 31 year old daughter, Beth, in the period preceding her death; and the family's struggle and determination to find out the truth from the Sussex Partnership Trust, about the circumstances and failings of her death. This blog post is adapted from a talk given by Aldyth Smith to Sussex Partnership Trust professionals for a training day on 'Learning from where things go wrong' in November 2017. Family photograph of Beth Smith looking out from the roof of the Museé d'Orsay - one of her favourite places Beth was our beautiful daughter who was quirky and mischievous, smiley and – like her Mum - always had a plan for the day! I don’t want our family and our story to be simply a case study. Although it’s great to be listened to now, this would never have happened without INQUEST, our legal team and the Care Quality Commission. And our enduring love for our daughter. How was it that our daughter had been able to hang herself in a hospital where she was supposed to be safe? Beth was estranged from us when she died. She was often an inpatient. We found that out when the police called on us when looking for her in the early hours. This was a crash course of learning about the troubled life our daughter was living. We wrote to the hospital to ask if we could help in any way. This letter – and a later similar one - was not responded to. No one was able to explain why vital contact opportunities were missed. On October 12 2011 at 9:30 a.m. we had a phone call. We were told Beth had hanged herself in Centurion Mental Health Centre and that the Trust had broken Beth’s confidentiality in telling us. Our first physical contact with Sussex Partnership was a nurse from Centurion who was abusive towards us in Worthing hospital and loudly objected as we made our way to our daughter’s bedside. Abuse from this nurse was swiftly followed by a meeting with a total stranger, who was Beth’s nominated next of kin and executrix, saying that we would not be welcome at the funeral. The reason she gave was that, in her opinion, this would upset Centurion staff. This gave us huge concern as to exactly what had been going on. However, our daughter was leaving us for ever and we were too shocked to ask questions. We were not allowed to the funeral and nor were Beth’s childhood friends. We were all being punished but had no idea why. This illness had taken Beth away, not just from her friends and family but, most cruelly, from herself. It quickly became clear to us that the people surrounding and treating her in her final days had no idea who she was. And she knew this. In what was to be her last of 28 sessions with her therapist, Beth said ‘You don’t get me at all’. Her therapist seemed to agree with this, recording ‘…she felt I was yet to understand her’. We really believed that the serious incident investigation process would lead us to the truth about what happened. The only point of comparison we had was our dealings with the Coroner’s officer, who was just amazing. She just kept her word, phoned when she had promised, looked into things in a timely manner and kept us informed. It was as if we mattered to her. The Trust seemed keen to avoid answering calls and needed reminders about answering almost every email we sent. At this point we heard Benjamin Zephaniah making an appeal for INQUEST and a light went on. We expected to contribute to the serious incident investigation in a meaningful way. We submitted some initial questions. A reviewer told us that Beth had been a very difficult patient but that staff had known her so well they could tell how she was feeling simply by looking at her face. She said that staff had lost objectivity with Beth and that this had compromised their professionalism. She followed this with ‘But you can’t expect me to sell my colleagues down the river’. Well, the serious incident investigation sold the truth - and us and Beth. A redacted version of the serious incident investigation report had the time of death wrong. There were snippets from allegations Beth had made about the family in various assessments - something Beth would do when she was at her most ill - and the ‘abuse’ was seen as the cause of Beth’s severe illness and her self-harm. And we were condemned in our absence. Believing this version of Beth’s life meant that an opportunity to help her back towards the truth was lost. Staff effectively colluded with the illness and trapped her in it. Her claims should have made people curious not condemnatory of her family The serious incident investigation report stated that there were formal records that Beth did not want us contacted. There are no such records, as was confirmed at the inquest. It was not until the morning that senior managers decided to call us. In effect, we missed 15 hours with Beth and her wider family and friends lost the chance to say goodbye. We felt betrayed when the agreed changes were not made to the serious incident investigation report in May 2012. The report had been signed off over four weeks before we met to discuss our points. What was this charade for? WHO was it for? In August 2012, we got the medical notes relating to Beth’s final admission. The serious incident investigation report did not accord with the notes. This made us question the motives of the reviewers. How on earth was it possible for them to give this version of events when the medical notes and other documents suggested such fundamental differences? Where was the truth? Certainly not in this report. How could they be so careless with Beth’s life story. What ‘learning’ was supposed to happen from this false representation? INQUEST advised us to employ a solicitor and barrister. We could never have managed without them. Families are SO powerless and all this at a terrible time in their broken lives. This process cost us almost £30,000* but we had to represent Beth’s interests properly at the inquest. It was the only way to the truth. In correspondence with the Trust post-inquest, we received a letter saying that ‘we owe it to Bethan to learn from her death’. No they didn’t. They owed it to her to keep her alive. They still owe her the truth. Thinking we were helping the Trust we trawled through the serious incident investigation report and all the statements again and sent our critique to the chief operating officer. She admitted that she had lost our critique. We were clearly going to have to look for the truth ourselves. The Trust seemed to have little regard for it. Correspondence with the Trust continued. We exasperated them. In 2016 we were told that the Trust had learned all it could from our daughter’s death - despite having lost our critique – and that we should go to the ombudsman. So, our first dealing with Sussex Partnership was an abusive shout and the final one was to be this slap down. Yet, all we had ever wanted was to know the truth about how it was that our daughter had been able to hang herself. And to prevent someone else’s child doing the same thing. We were invited by INQUEST to ‘Listening to Families’*. We spoke to the Care Quality Commission about our experience. After a nudge from them, the then chief executive appeared to have a sudden change of heart, and suggested a fresh pair of eyes might look at the issues we had raised. We had a meeting which put Beth right back at the centre. We wanted to rewrite the serious incident investigation report using the notes and statements we had. This was the last record of our daughter on this earth. We could see the truth. They were short staffed, they were not watching her every ten minutes, she was feeling suicidal and she was found just by chance. How COULD they get it wrong? Didn’t she matter? This led us to speculate as to why this was? Had the research been shoddy or was there a more sinister motive? The new chief executive read our file and our serious incident investigation report. She wanted to meet us. We thought that she would be like everybody else. She wasn’t. She isn’t. She gave us an unreserved apology for the way we had been treated and has submitted our report to the Clinical Commissioning Group with the request that it be subject to their standard review procedures. We couldn’t believe it. We are due to report to them later this month. She has done everything she promised us. We want to help her to change the way families are treated and we do so in Beth’s name. She describes us as a ’gift’. Previously I fear we had been a curse. It is NEVER too late to start listening. It is never wrong to be curious. There needs to be a culture where people tell the whole truth and not just the truth up to the point where it implicates colleagues. In November 2017, we presented the Bethan Smith award to an outstanding member of staff at the Sussex Partnership Trust who has worked with patients and families. We continue to work with the Trust and hope that they can keep their promises. The best bit about feeling that we are at last being heard is that we can look at pictures of Beth and smile rather than cry. * Costs of legal representation varies, and means tested legal aid to cover the costs is available in some cases. Support from a caseworker at INQUEST is completely free to bereaved people, although they are not able to act as a legal representative. INQUEST has long campaigned for non means tested legal funding for bereaved families at inquests. * The Care Quality Commission family listening day report is available here. 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