It was filmed
25 35 years ago (thanks for those who noticed it’s even longer than I thought, by ten years), and yet some of the voiceover could as readily apply to what we’ve seen and heard about the failings at #SouthernHealth in the last few years. People left in beds or on beanbags because no-one had the ‘wit or wherewithal’ to imagine a future for them, to support them, to see them (as fully human). Lives lived and arranged around staffing tea breaks (motivational tea party anyone). Incarcerated people doing everything they can to subvert the system (or just trying to communicate – next step PBS bootcamp).
In many ways I think we’ve got nowhere in the intervening 25 years, and that is our responsibility, each and every one of us who make up our crappy society with ideals of containment, paths of least resistance and a discomfort of the sight, sound, smell of difference.
So we pathologise, and label, and snub out any hope or optimism or belief. We create a hell on earth with no imagined future and a sort of living purgatory for anyone who is different and those who love them.
In the last six months, since Southern Health had the Mazars draft, a number of families have complained that they were not listened to. While Southern Health have been orchestrating their PR operation to get some good press and apparently transform their substandard
care death reporting for people with learning disabilities or mental illness, here’s what families with the most recent dealings with them, had to say:
‘I think lessons need to be learned all around, the communication has been terrible for us to phone nine times about our concerns, I can see there is a lot of people talking in circles and not facing up to the truth that there was not a crisis care package for her and that was one of the reasons for her not being here today’ Doris Cranmer’s family
‘Southern Health failed to take into account the very strong feelings of the family that Emma was a suicide risk, particularly as the Easter Sunday was a significant anniversary for her. as it was the 20 year anniversary of her daughter’s death and She had shown signs of severe mental stress and had discussed feelings of suicide with them. Southern Health ignored the family’s concerns and released Emma home with the guarantee of a phone call at seven o’clock that evening. The phone call never materialised and Emma tried to commit suicide four hours later’ Emma Connell’s father, Peter Stuart
This builds on previous incidents too, in 2011 Victoria Nye’s father desperately pleaded with Southern Health:
‘Her death sparked a top-level inquiry by health bosses into care given to Victoria and the decision to allow her to return home, despite the desperate pleas of her dad, Graham, who warned she would be dead within hours of her release’
Teresa Colvin died in 2013, and despite the lessons apparently learned by Southern Health by then:
‘The hearing heard that during her stay staff failed to tell her husband about the severity of two incidences where she escaped the unit and the coroner accepted that Mr Colvin should have been fully informed…. Mr Colvin insists that “the signs were clearly there” to indicate that she was at real risk of harming herself and believes that Southern Health NHS Trust, which ran the service that has since been closed, “fatally let her down”… I have heard nothing that gives me any doubt that the risk assessment and the quality of management of my wife’s care over the weekend of her admission was inadequate and directly led to her fatality’
The following year, 2014, Jason Kelly died while under the ‘care’ of Southern Health:
‘Even on the morning of his death Mrs Kelly says she pleaded to have her son sectioned under the Mental Health Act’
Like LB, Eddie Pearse was only 18 when he died. He too had crossed the magic invisible threshold into adult [non] services, that within Southern Health seemingly equates to completely ignoring any family concern or involvement:
‘Once he turned 18 his care was transferred to Southern Health’s adult team meaning his dad was no longer informed of the issues affecting his son and prevented him from taking part in sessions… as soon as they hit 18 they are considered adults, there is no transition… there should have also been a much better handover between the youth and adult mental health service. The paperwork was passed across but there was no meeting’
These parents and family members were all psychic it seems, prophesying what would come to pass and completely sidelined and ignored by staff and systems at Southern Health. Sara predicted what would happen to LB, her greatest fear realised 44 days after she wrote it:
‘The thought of him having a seizure, in a locked unit, unnoticed, has generated a new level of distress I can’t describe. I don’t care how old he is, and I certainly ain’t treating him like a child, but I want to comfort him, and keep a watchful eye for any further seizures. And I can’t’
Not only did Sara predict it, she did everything in her gift to make sure Southern Health staff knew and could care for LB. Sara spoke to staff, she called them, she emailed them, she wrote a blog about it (and we now know her blog was being monitored for reputational risk purposes) and still it was no use.
Despite all of the (false) reassurances about learning lessons, families are still ignored, patients are still just collateral, an inconvenience. The worse thing is that this plays out in broad daylight, not a sniff of accountability, nothing.
25 35Geeorge Julien/Mazars/Blog years since Silent Minority, our most vulnerable are as vulnerable as they ever were.
I've worked with many people in different end-of-life and palliative care settings, from 10-year-old children to a woman who lived well into her 98th year. My aim as an end-of-life doula is to create an environment where the sorts of questions that no one has felt able to ask are broached and discussed.
No matter what someone is asking, the most important thing is that they are heard. That their pain and anguish, their hopes and dreams, their worries and their fears are all given a voice. When a person at the end of their life is talking, the greatest gift we can give them is to listen. Here are the most common questions I'm asked, and how I respond.
Read the full story with all 11 questions by Anna Lyons on the NetDoctor website (opens in new window)
Terminally ill patients are to be encouraged by an NHS Trust to write their own 'end-of-life plan' instructing doctors, nurses and family about their wishes for their final months, days and hours.
The document is based on birth plans that pregnant women commonly draw up with their midwives, and takes the form of a single-page grid detailing the personal wishes of the patient about every aspect of their care.
Subsections include: 'What will be important to me...', 'How to support me and those I love...', 'What MUST happen...', and 'What MUST NOT happen...' when the patient has months, weeks, and then just days to live, at the time of their death, and then afterwards.
Read the full story on the Daily Mail website (opens in new window)
Useful videos to inform and educate on End of Life Care - visit the SCIE website to view them.
This resource is for people who work with adults who are approaching the end of life. Some 500,000 people die each year and, because of the ageing population, that number is predicted to rise over the next few years. It’s important that social care and health professionals who work with people at the end of life and their families have access to high quality resources and information so they can give the best care possible.
Visit the Social Care Institute for Excellence website (opens in a new window) to read full article.
NICE has launched the first guidelines for the NHS on improving care for people who are in their last days of life.
The guidelines aim to put the dying person at the heart of decisions about their care, so that they can be supported in their final days in accordance with their wishes.
Around 500,000 people die each year in the UK. Of these deaths 75% are not sudden, but expected.
While a recent report has ranked end of life care in the UK as the best in the world, there are areas where care can be improved and made more consistent.
Until recently, the Liverpool Care Pathway (LCP) was used to provide good end of life care. It was withdrawn however, following widespread criticism and a subsequent government review that found failings in several areas. Among the criticisms were:
As a result, NICE was asked to develop evidence-based guidelines on care of the dying adult. The new guideline aims to tackle these and other issues by providing recommendations for the care of a person who is nearing death no matter where they are.
Read full article on the Nice website (opens in a new window)