Why ‘real listening’ is so important to bereaved families
19 April 2017
Aldyth Smith, mother of Bethan who died whilst in NHS care, talks openly about the need for Trusts to really listen to families and the enormous impact a long-awaited apology from the NHS Trust has had on her family.
INQUEST has worked closely with the Smith family throughout their fight for justice. They attended our CQC Family Listening Day last year, which proved to be a turning point in their campaign for the truth and accountability. Thank you for sharing your story.
"Last November's meeting with the CQC was a massive turning point for us in a way we could never have imagined. In September, we had received a very dismissive 'report' from Sussex Partnership saying among other things that they could learn no more lessons from our daughter's death and they suggested that we went to the Ombudsman if we were not satisfied with this 'report'.
Meeting other families at the powerful Family Day was inspirational for us and we did not feel so alone any more. David spoke to Paul from the CQC who spoke to Natasha who suggested that we write to Sussex Partnership again saying how disappointed the CQC were.
Quite astonishingly the Trust wrote to us to say that our story was to be looked at again with fresh eyes and the first meeting was in January . My healing began as soon as Diane said 'Tell me about Beth'. The difference that real listening makes is immense. At last Beth was at the centre of things, right there with us in that room and we knew exactly why we had fought so hard for the truth. At that first meeting we asked if we might be allowed to re-write the Trust's SUI using just the records and witness statements available to us and they agreed. The task took many hours and was harrowing. It was really strange how new facts seemed to pop up all the time that we had missed. The original report was such a travesty of the truth.
Our second meeting was in February with our son. We were thanked for our report and asked if it could be used for training. We readily agreed. We were also invited to take part in that training which seemed unbelievable to us. Our son was able to have time on his own to explain the impact of having a mentally ill sister and the added burden of an obstructive Trust which seemed not to respect the family at all. To their credit, they listened and now he is being supported. At last, his pain is acknowledged and he can get on with his life.
As a family we were commended for being measured and dignified. We were asked how things might be improved for families and agreed to work with them on a leaflet or a booklet to be given to a bereaved family. Something perhaps to read in the dark hours of the night when you can't remember what was said or what might happen next. We stressed the importance of minutes from meetings. You can easily hear what you want to hear and then be disappointed or angry when things do not happen. It is a terribly delicate balance. The Trust is in a hurry to get the report done and the family is reeling and unable to process their grief.
In our case we knew absolutely nothing at all and were it not for INQUEST and the steadfast support of Charlotte our solicitor we would have been absolutely lost. Looking back now I can see that the power of just listening was immense. As a mother who has lost her child in the most distressing of circumstances I had antennae for lies and bluffing. The lady from the Trust, meanwhile, was tweeting about her nails.
Yesterday we met again with the Trust which now has a new Chief Executive. She offered us an unreserved apology for the way we have been treated. It was powerful and we knew that the days of writing angry but careful letters where you have to make sure that every statement is balanced by fact were over. She has asked us to make a training film and has decided to submit the Smith SUI to the CCG to be read alongside the original SUI. The leaflet we contributed to has been sent to print. This is beyond anything we ever could have hoped for.
Sussex Partnership at least is trying to be better. Of course there will be mistakes and delays and not everyone will feel as we do now. We know that there would have been no change at all without your Family Listening Day and the opportunities it offered. We also attended the NHS Improvements day in London last month and shared our story with members of three different Trusts. Really fantastically, we were able to report the power of listening to families and the difference it has already made to us. It was not just a rant about a Trust any more but a feeling that positive and healing things can emerge out of a terrible darkness. This morning we have had an email from someone who was at our table that day who has taken an interest in our story and he was so pleased for us.
This little victory is for all of us, for you at INQUEST and for those who have no voice or strength to fight. We were blessed with the support of family and Team Smith who had to listen to distressing details. Along the way we met some people who were fantastic at their jobs like the West Sussex Coroner's Officer. People you should never have to meet.
The Trust has plans for a new initiative based on what they pledge to families when someone dies. For us at least this will be always be known as Beth's Pledge”.
‘You have clearly made yourselves a force to be reckoned with, a powerful instrument for good. In the process you have not only achieved real change in an aspect of our common life which would have commanded little attention or esteem were it not for your efforts, but you have at the same time offered enormous support to those bereaved people who long for a clear verdict on the death in custody of someone who means a great deal to them.’
– Dr Peter Selby, President of the National Council for Independent Monitoring Boards