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Wednesday, 17 February 2016 13:28

-George Julien/Mazars/Blog

Psychic families and prophetic consequences #JusticeforLB

This weekend I watched an old film Silent Minority recorded in 1981 (thanks Saskia and Sara for the tip off).


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.



Published in News
Wednesday, 17 February 2016 13:03

Mazars report/ scandal says Rob Greig

‘A learning disability scandal is being swept under the carpet’

Rob Greig, former Department of Health director for learning disabilities, says the silence on a damning review of Southern Health is worrying


By Rob Greig

The Justice for LB campaign is widely, and rightly, viewed as one of the most successful examples of the mobilisation of public opinion to challenge service failure.

For those not familiar with it, Connor Sparrowhawk, a young man with learning disabilities, died while under the care of Southern Health NHS Foundation Trust in July 2013. Given the trust’s failure to accept responsibility, Connor’s family and friends launched the Justice for LB campaign (Laughing Boy, ‘LB’, was Connor’s nickname).

The trust initially said Connor died of ‘natural causes’ but an independent investigation found his death could have been prevented. Last year, an inquest jury found that neglect contributed to his death.

‘Failure of leadership’

Before Christmas, there was a sense that this campaign was leading to real change. Most notably, the findings were revealed from an NHS England-commissioned report (the Mazars review) into Southern Health’s handling of patient deaths.

The report described how the trust had, among other things, failed to investigate hundreds of unexpected deaths of people with learning disabilities or mental health conditions. It blamed a “failure of leadership” and warned investigators had “little confidence” the trust fully recognised the need to improve.

Strong words were said by people in authority. Health secretary Jeremy Hunt was “profoundly shocked” by the findings. Simon Stevens, NHS England’s chief executive, spoke of the health service being at a “cultural turning point” at which it must change the way it responds to families.

Lack of changes

However, since Christmas, far less has been said. It is also hard to identify any significant change to emerge from the litany of criticism that followed the Mazars report. What has happened to permit the silence that now surrounds this scandal?

Real change should be identifiable in three main places:

1) National policy: The reports and inquest provide learning about diverse issues. The rights of families. Staff training. How NHS trusts are allowed to merge and how their services are regulated. A new government ‘learning disability action plan’ is being developed. The version I’ve seen addresses none of the issues arising from Justice for LB.

2) General NHS practice and behaviour: One of the most disturbing statements in this saga came from Southern Health’s chief executive. She said that what was happening at Southern was no different to other NHS trusts.

A joint NHS England/CQC response to the Mazars review committed to action to find out if this is the case, but that involves a fair bit of shutting the stable door after the horse has bolted.

Improving investigation of deaths is good – but the key issue is stopping those deaths in the first place. That requires action around factors such as recognition of rights, family engagement, staff skills and applying real person-centred practice and leadership. The national action around this would be politely described as hard to see.

3) Southern Health: All the indications from Southern Health suggest they are still more concerned with denying responsibility than instigating fundamental change. The initial failure of the trust has been compounded by a persistent failure to accept responsibility. Accepting input from Monitor on how to improve death recording is not a cultural and quality improvement plan.

A fresh start is needed

Many observers remain baffled as to how the trust and NHS England cannot see the need for a fresh start to create that culture.

I’ve never been one to pillory individuals, but it took Connor’s young brother standing up in public to get Ms Percy to apologise directly to the family.

Effective leaders can see when they get things wrong – without needing a series of external reports to speak of ‘failure of leadership’. Out of self-respect, if nothing else, how can the chief executive and other leaders in the trust not accept their responsibility and recognise the need to move on?

Compare and contrast this with what happened after the Mid Staffordshire hospital scandal. There, neglect was considered to have caused fewer deaths than went uninvestigated in Southern. Yet senior people lost their jobs, staff were struck off their professional registers, families received compensation, a public inquiry was held and the government placed new, explicit expectations on the NHS, for example around staffing levels.

You cannot help but conclude that government is ascribing a different value to the lives of people with learning disabilities and older people with mental health problems (whose unexpected deaths also commonly went without investigation).

Why the lack of action?

In a recent blog, I described how, during my time as the government’s national director for learning disabilities, a very senior NHS manager said his non-delivery on institutional closure was acceptable because “no-one loses their job for not delivering on the learning disability agenda”. It is time to tell another anecdote.

Over 10 years ago, when the abuse of people with learning disabilities within NHS services in Cornwall was about to be exposed, I argued within the Department of Health (DH) for a robust action plan in response – if only because there would be a strong public demand for one.

A very senior DH official told me this wasn’t needed because “DH gets attacked in the media about the NHS every week. We take it on the chin, apologise for a couple of weeks, and then move on while the media forgets about it because it is attacking us about something else”.

Fortunately, he lost that argument and a task force was sent in to sort things out in Cornwall. However, that mentality remains in key places.

One of the strengths of the Justice for LB campaign is that the family, their friends and allies are not going to forget and move on. There is a need for government, NHS England and Southern Health to show that they have heard and acted on the need for real and discernible consequences and change – and demonstrate that Connor’s death, and those of others, has made a difference for other people with learning disabilities and their families.

Rob Greig is chief executive of the National Development Team for Inclusion. He was the Department of Health’s director for learning disabilities from 2001 to 2008.

Published in Resources

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)

Published in Resources

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)

Published in Resources
Tuesday, 05 January 2016 16:35

End of life care videos on Social Care TV

Useful videos to inform and educate on End of Life Care - visit the SCIE website to view them.

Published in Resources

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.

Published in Resources

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:

  • There were no ways of reliably determining whether a person was in the last days of life
  • Drinking water and essential medicines may have been withheld or withdrawn
  • Examples of changes to treatment were carried out without forewarning

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)

Published in Resources