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BLOG: #JusticeforLB campaign represents the many, not the few

BASW Professional Officer Joe Godden says the #JusticeforLB campaign has given a voice to adults with learning disabilities.

“My son died in an NHS residential unit. Every day I wake to the pain” – these are the words of the remarkable Sara Ryan, whose son Connor Sparrowhawk died while in the ‘care’ of the Southern Health NHS foundation trust. An inquest recently found that neglect contributed to Connor’s death. Thanks to the tireless campaigning of his Mother and a strong campaign team, the campaign to get justice for Connor, who was known as ‘Laughing Boy’, has given a face and personality to statistics regarding the deaths of adults with learning disabilities.

We now see the 'leaking' of a report by auditors Mazars, commissioned by NHS England to look at all deaths at the trust between April 2011 and March 2015. The report found more than 1000 deaths of mental health and learning-disability patients were not properly examined by the Trust. During this period, 10,306 people had died. Most were expected. However, 1,454 were not and the NHS has failed to investigate the unexpected deaths. Of those, 272 were treated as critical incidents, of which just 195 - 13% - were treated by the trust as a serious incident requiring investigation (SIRI). The likelihood of an unexpected death being investigated depended hugely on the type of patient. The most likely group to see an investigation was adults with mental health problems, where 30% were investigated. For those with learning disability, the figure was 1% and among over-65s with mental health problems, it was just 0.3%.

The Mazar report blames a "failure of leadership" at Southern Health NHS Foundation Trust. It says the deaths of mental health and learning-disability patients were not properly examined. Southern Health said it "fully accepted" the quality of processes for investigating and reporting a death needed to be better, but had improved. Even when investigations were carried out, they were of a poor quality and often extremely late and there was no 'effective' management of deaths or investigations or "effective focus or leadership from the board". Former care minister Norman Lamb quite rightly described the findings as ‘shocking’: "You end up with a sense that these lives are regarded somehow as slightly less important than others and there can be no second class citizens in our NHS." The very thought is just horrifying, let alone the trauma experienced by families like Connor’s.

In recent years we have had the scandal of Winterbourne View and Stafford Hospital to name but two. The Serious Case Review into Winterbourne View recommended that it should be only in exceptional circumstances that people with learning disabilities should be accommodated in ‘hospital’. Yet the process of slashing the numbers accommodated by health hospitals, sometimes re-labelled ‘residential’ care, has ground to a halt. There is some hope with the publication of the Government’s response to the No voice unheard, no right ignored consultation that there may really be a will to move people into community settings, although it is disappointing there are few timescales in the recommendations.

BASW reported in August 2014 of the success of Salford Council and local NHS in bringing people with a learning disability back to community settings and, equally as importantly, providing constructive community support to prevent the need for hospitalisation. Yes, people with a learning disability need hospital care when they are physically ill, and when they are treated health inequalities must be addressed, but placing people in unsuitable care has to stop.

Social work, with all our knowledge of supporting people in the community and skills of working in a multi-disciplinary way, skills in advocacy and with a sociological understanding of how institutions can behave is at last recognised. One of the recommendations of The Government response to No voice unheard, no right ignored is a proposal that all people with a learning disability placed out in out of area placements should have a named social worker. This was a point strongly made by BASW. We are now waiting to hear if this proposal can be resourced. BASW would go further and say that all people with a learning disability who are in any form of institution should have a social worker and that includes people placed in NHS facilities for whatever reason.

BASW will be meeting with the Department of Health in the New Year and we welcome any social worker who wants to get involved in tackling the appalling issues raised by the Mazar report, or the Government response to No voice unheard, no right ignored to get in touch.

To express your views please email england@basw.co.uk