Lost Lives NSFT: Campaigners remember the people who have died because of failings in mental health services in Norfolk and Suffolk

For bereaved families, the consequences of inadequate mental health services are with them forever. Over a thousand people (see figures below) have died since the Campaign to Save Mental Health Services in Norfolk and Suffolk was formed. Our campaigners want the scale of the loss in our community to be recognised and for those who have lost their lives to be remembered. We feel that NSFT demonstrate a tendency to minimise how many people have lost their lives. We want to highlight what a terrible price too many have paid for the failings at NSFT. A fourth round of special measures means too many have died and more will die.

The release of the CQC report into NSFT upset bereaved families who feel that the ‘lessons are not learnt’. A bereaved relative said: “I find it so painful each time I hear of another death. I know just how devastated their families will be. There is no recovery for them”

On the day the CQC report into NSFT was released, campaigners, bereaved relatives, and others gathered to pay their respects to those who have died. We tied memorial hearts to the hedge outside Hellesdon Hospital and NSFT sites across the two counties and lit candles. We wanted to do something to demonstrate why NSFT’s failings matter. Some people pay the ultimate price. Due to the pandemic, we did not feel we can stage a march to highlight awareness. We wanted to do something that people can join in with. Something to show we care and that we remember the people who have died.

This was such a moving event and all through the day photos were shared on social media along with messages of support for the bereaved and for our campaign. In the news reports, hearts with poignant messages or names on fluttered in the breeze.

We were all moved by the carefully stitched little heart, that said “Mummy” on it, that was placed in memory of someone who died in 2018. Tragically, on the day we were remembering those who have died there was yet another report of an inquest of young mother who had lost her life. Our hearts went out to her family. https://www.northnorfolknews.co.uk/news/obituaries/karis-dacosta-cawston-north-norfolk-tributes-paid-8928564

Our campaigners have supported many bereaved relatives over the years. Our hearts event was deliberately a gentle protest so that people who are not comfortable campaigning could join in.  A bereaved mother said: “I heard about this and felt I wanted to support this memorial. Too many of those who have died were stigmatised in life and their deaths are almost invisible. The first step in improvement is acknowledging the loss and pain. You need to heal before you can build.  I would like to see NSFT working with bereaved relatives to create a permanent memorial.”

There have been 36 Prevention of Future Deaths reports lodged against NSFT since the ‘Radical Redesign’ in 2012. Each was an opportunity to learn from mistakes. 36 hearts were made (each with the names and dates of the person who died on). These deaths represent the tip of a lethal iceberg. They are the worst of the worst failures. We made hearts for every one of them because we will not forget them. NB: Apart from the last 3, these figures came from NSFT in two FOI requests and they are on the MoJ website. They are dates of PFD not deaths:

2013: Matthew Dunham 

2014: Jamie Barlow, Graeme Kidd, Jo Anne Nobbs, Ann Wells, Sebastian Davies

2015: Mark (Robert) Anstice, Thomas Thurling, Christopher Higgins, Barbara Mayer

2016: Karen Lee, Harriet Philo-Powell, Jane Craske

2017: David Sean Read, Brian Stannard, John Scott, Benjamin Goodrum

2018: Rachel Edwards, Matthew Arkle, Henry Curtis-Williams, Nyall Brown

2019: Ellie Long, Tamsin Grundy, Anthony Buckingham, Kerry Hunter, Tyla Cook, Peter Frosdick

2020: Darren King, Andrew Gibbins, Christopher Cummings

2021: Mary Bush, Terrance Tuttle, Joshua Sahota

2022 (January – April): Theo-Brennan Hulme, Sheila Elizabeth Steggles, Tracy Wood

We would have liked to see NSFT leads, who were saying ‘sorry’ in the media, to have stepped outside of Hellesdon Towers and talked to the bereaved families gathered there. They did not. We hear rumours that rather than acknowledging the tragic loss of life they spent their time disputing the figures. As if, our community would not notice how many have died. As if, the public don’t see and hear the media reports that seem almost continual. As if, those who have died have been deleted. It is almost as if, NSFT doesn’t care. Or they care more about looking good than about being honest.

One of our members, who lost her son in 2016, said she is appalled by the way NSFT accept the high numbers of deaths. She was a governor of NSFT and has followed closely the death statistics and the way NSFT don’t seem to understand what losing patients means to their families. She says: “The year my son died 184 people, that we know of, that counted in the statistics, died. The following year they announced in a meeting that there was an improvement because only 137 people had died. How can 137 deaths be a good thing?” (these figures come from CEOs 2016/17 report to governors).

At this year’s AGM, NSFT figures showed 320 deaths in last two years (including 60 suicides). We have claimed that over 1,000 people have died since the disastrous ‘radical redesign’ in 2013. That was our under-estimate based on the figures we have collated over the years. We were only counting the ‘unexpected deaths’ of people receiving a service (or having recently received one) when they died. Of course, many more have died by suicide, through drug or alcohol use, and other mental-health related reasons, that were not in touch with NSFT. If NSFT try to minimise the numbers they own as having died it is very hurtful to the bereaved, disrespectful to those who have died, and it looks grubby. Of course, it could be that NSFT don’t know how many have died. That would be a terrible thing.

We did an FOI earlier this year asking for the numbers of deaths of people on their waiting lists. They refused to answer, referring us to Dan Dalton’s report in the AGM papers. This did not contain the information we had asked for. We suspect they don’t know.

A note about the statistics:

 It is almost impossible to gather statistics re: numbers of deaths at NSFT because of the way they are gathered and reported. This is a national issue. The figures reported under the NRLS national recording system only reflect a small proportion of the unexpected deaths due to their specific criteria for inclusion.

Verita, in their 2016 report into the unexpected deaths at NSFT raised the lack of standardised data as an issue (point 3.25)

The figures lodged with NHS England in Annual Reports often do not correlate with those presented elsewhere by the trust. They also appear in different documents covering different years depending on when they were reported. For example, Annual report given to governors seems to relate to figures lodged on NHS England the following year.

The way statistics have been gathered over the last few years keeps changing. For example, in 2014 the drug and alcohol deaths were no longer included when NRP was disbanded and services outsourced.

Please bear in mind we are a group of volunteers who do not have full access to documents to verify figures. We have kept an eye on the ‘unexpected deaths’ presented in ‘patient safety reports’ at every board meeting. Just in case NSFT do want to challenge our claim, we had a quick look at verifiable figures and discovered it was worse than we thought. These are the numbers we think have died :

2012/13:  53 (from Annual report to governors. Reported by BBC as 88)

2013/14:  139  (Reported as 105 in Annual report)

2014/15:  157 (from 2016 Verita report)

 2015/16 184 (Trusts’s annual report) but reported as 157 by BBC)

2016/17: 560 with 85 having an SI  (from Annual report)

2017/18: 137 (65 in NRLS which is always a lower figure)

2018/19: 564 with 157 having SI (from Annual Report)

Half year 2019/20 (Feb to Nov): 58 (media report and we are missing the other half year figures)

2020/22 (2 year period): 320 including 60 suicides in 2020/22 (from NSFT’s AGM papers)

Total 2172 –Taking the lowest verifiable figures it is 2008 so our ‘over 1,000’ is a generous figure.

Those in power need to act urgently and decisively to end this loss of life at NSFT. May they all Rest In Peace. Our thoughts are with their friends and families.