Families tired of hearing that “lessons have been learned”

Response to The Mazars Report into Southern Health NHS Trust by Oxfordshire Family Support Network

Firstly and most importantly, we wish to say that our thoughts are with all those families whose relatives have died unexpectedly and in unexplained circumstances whilst in the care of Southern Health NHS Trust. The impact of the Mazars report on these families should not be underestimated and this report will have no doubt added to their grief, as it must raise so many questions about their loved ones and how they died. We also fully support the recommendations of the report.

Our comments on the report as follows:

• We are deeply shocked to learn that only 1% of all deaths (expected and unexpected) of people using learning disability services, provided by Southern Health were investigated. The report also raises many other serious questions.
• We have great concerns about the large percentage of families who still do not fully understand why their relatives died.
• We are angry at the total lack of regard for their feelings and lack of family involvement. How can families have any confidence that their relatives’ deaths were not of a result of neglect or were indeed preventable as was the case with Connor Sparrowhawk?
• We recognise that many families who currently use Southern Health services will also be seeking reassurances that their relatives are safe and this will be a deeply worrying time for them.
• This report focused on Southern Health NHS Trust. It is a deep concern that there may be the same issues in other trusts. It is clear that the data simply is not there for anyone to be confident to know what has really been happening to people with learning disabilities.
• We welcome the fact that the Mazars report recognises that deaths occurred in community-based settings as well as in hospitals. However, the scope of the report was limited, in that it did not look at the clinical history of individuals before they died. Nor did it look at other contributory factors such as the quality of support they received, staffing levels, funding, housing etc. We feel strongly that this needs to be addressed in future investigations or enquiries.

We think the following should happen:

• There needs to be real clarity about who should be responsible for investigating any death.
• Given the number of agencies often involved in an individual’s life, those responsible for these investigations need to have a clear and full picture of that person’s life and what led to their death. We know that there often a number of interacting factors and these need to be looked at in order to prevent such things happening again. For example, the CIPOLD report demonstrated that many unexpected deaths frequently showed that factors such as epilepsy and problems with swallowing placed people at greater risk of premature death.
• Families need very clear information about who they should contact if they have concerns about their relatives’ care and need to be actively listened to and involved as a right.
• Where there has been an unexpected death, wherever this took place, families should have access to independent advocacy, support, funded legal advice and legal representation. They should also be fully involved in the independent investigation as a right.
• We need clarity about who investigates and who decides the death of a person warrants an investigation. It is not enough that investigations are an internal decision and conducted internally. There needs be external scrutiny of a trust’s decisions to investigate any unexpected death. This scrutiny should involve people with learning disabilities and their families.
• If someone dies in police custody, or in prison, there is an automatic right to an independent investigation through the Independent Police Complaints Commission. We recommend that the same right to an independent investigation should be given to people with a learning disability where a death is unexpected.
• Whilst we welcome the steps The Secretary of State for Health, Jeremy Hunt is taking to involve the CQC in investigating Southern Health services further, we request that individual cases are looked into so that relatives of those who died unexpectedly know exactly why and how they died.

Finally, we question the competence of the current Board of Southern Health NHS Trust and its CEO. They have consistently failed to make improvements in the past, while frequently stating that they have changed their processes and policies. We have no confidence in their ability to make the required changes in their practice and culture to keep people safe. Families are tired of phrases like “lessons learned”- they are meaningless unless real change is implemented quickly. Therefore, we call upon Monitor to put Southern Health NHS Trust into special measures as a matter of urgency. The public need the reassurance that the services they or their relatives use at the Trust are safe NOW!

*Notes to the Editor
Oxfordshire Family Support Network (OxFSN) is a registered charity run by and for family carers of people with learning disabilities – both children and adults.
We were set up in 2007 by family carers who wanted to use their experience to help others in the same situation, based on our belief that family carers are experts by experience.
We are managed by a board of trustees, the majority of whom are family carers of people with learning disabilities.
Contact: info@oxfsn.org.uk