‘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

Families crafted  'gingerbread' figures to represent 337 people with learning disabilities whose deaths were not investigated by Southern Health
Families crafted 'gingerbread' figures to represent 337 people with learning disabilities whose deaths were not investigated by Southern Health

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.

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

  1. Old School February 16, 2016 at 11:28 am #

    There is a pattern emerging with health and social care in this country today. Under funding through cuts and a continual ‘meddling’ with service provision coupled with a cavalier disregard of advice from professionals is leading to harm being done to our vulnerable people who are silenced through a lack of advocates to speak on their behalf. This non negotiable macho approach to Welfare provision and training is becoming dangerous and those responsible for the cause of this situation remain as Teflon coated as ever…Cameron, Hunt, IDS, Morgan et al.

    • Pauline Thomas February 17, 2016 at 9:56 am #

      When you stop and think about how people with a learning disability or mental illness are treated by governments past and present you can see how their lives are seen as worthless. They are not quite gassing them but their lives are not considered worth caring about. In fact our dogs and cats are treated with much more compassion. So worthless they do not bother to worry how they met their death. Who cares if another one dies. Who cares about their relatives. A relative of a person with LD or mental illness should be glad we rid them of their burden. Should’nt they?

      It appears that all the professionals involved in this shocking collapse of duty of care to LB have this type of mentality. It also appears that the government and its health minister shares this mentality or otherwise we would have seen some heads rolling by now.

      • Planet Autism February 17, 2016 at 4:53 pm #

        Agreed. Charity begins at home, so does attitude change. Until individual professionals change their treatment of and level of respect for people with LDs and mental health issues, the culture will remain unchanged. It is individual staff and managers who collude to cover-up failings, not a machine.

        All the time people blame cutting costs (not saying that doesn’t make things worse) and short-staffedness there will never be change.

        People lack morals and compassion, it’s a selfish society.

      • Elisabeth February 18, 2016 at 1:37 pm #

        See all records of Longcare abuse

        Took almost full decade from1994 to fully expose possibly worse rape, sexual and physical abuse of learning disable people on record and how LA failed to act and obstructed investigation and families

        Must never be forgotten, as with all victims they still live with the nightmares and scars

        • Pauline Thomas February 19, 2016 at 2:06 pm #

          Actually Elisabeth many psychiatrists do not believe that people with a learning disability can suffer from post traumatic stress disorder. They believe they are incapable of feeling any emotions. That is why so many people with LD eventually end up depressed, anxious and possibly with a mental illness.

  2. Yvonne smith February 17, 2016 at 10:48 pm #

    I am so overwhelmed with the dignity that LB’s family have shown over the scandal of losing thier precious son, when i suspect inside they are screaming …I’m sure if it was me I would have been less forgiving, especially as my son is detained in an ATU miles away with autism and ADHD. Detained because over 3 years he was failed by our local NHS and was sectioned just to get a diagnosis. Now responding well to treatment after 5 months, he is again let down as the LA have dragged their heels in finding a care provider. j is now reverting back to feelings of worthlessness because no one cares…

  3. P Henson March 1, 2016 at 4:55 pm #

    What does Mencap have to say on this ?
    When my son is eventually on his own in the World who will be looking out for him ?