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Joint Statement from the Oxfordshire Transforming Care Partnership Board: Review into the deaths of people with learning disabilities 2017-18

July 2, 2018 By OxFSN Webmaster

Joint Statement from the Oxfordshire Transforming Care Partnership Board:
Oxfordshire review into the deaths of people with learning disabilities 2017-18

Statement from the co-chairs of Oxfordshire’s Transforming Care Partnership Board

“While we have known for many years that people with learning disabilities die earlier than the general population, the Learning Disability Mortality Review report made for grim reading and was deeply upsetting.

As co-chairs of Oxfordshire’s Transforming Care Partnership Board we feel it is important that we make public the work that is being done locally to explain how deaths of people with learning disabilities are investigated in our county. Despite the lower numbers of deaths reviewed, it is clear that there is still much work to be done to address these inequalities. We are however pleased that all deaths are now being reviewed in such detail. We welcome the recommendations contained in this report and the spirit of transparency and openness in which it has been shared.“

Gail Hanrahan (Oxfordshire Family Support Network) and Paul Scarrott (My Life My Choice)

Follow the link to read the full statement: Oxfordshire Transforming Care Partnership Board: Oxfordshire review into the deaths of people with learning disabilities 2017-18

Filed Under: News Archive, OxFSN Articles, Publications, Resources

OxFSN: Guidance on the Care Act 2014

February 1, 2018 By OxFSN Webmaster

Families asked us to produce some simple guidance on the Care Act 2014 so they know what their rights and rights of their relative are.

Follow the link to our:

  •  Guide to the Care Act – Top Tips for Family Carers of People with Learning Disabilities

Related information that will be of interest:

  • Together Matters have produced an excellent guide called – Thinking Ahead – A planning guide for families. You can download the guide here
  • OxFSN’s guide to finding the right support. This was written for families who have children moving into adulthood, the information contained is equally useful to older family carers who are thinking of the next steps and supported living.

Filed Under: Publications, Resources

OxFSN: Older Carers Report

August 9, 2017 By OxFSN Webmaster

The Embolden project aims to give a strong voice to family carers and to influence and hold decision makers to account within health and social care services.


This report sets out the current knowledge on the numbers of older family carers in Oxfordshire, caring for an adult relative or friend with a learning disability (LD).

It aims to make the case for increasing current knowledge in health and social care services – both statutory and independent of the numbers and profiles of older carers of people with learning disabilities in Oxfordshire, in order to meet their needs and plan support for their futures.

To read the full report follow the link to:

The number of older family carers of people with a learning disability in Oxfordshire

Filed Under: Publications, Resources

OxFSN Statement Mazars Report Southern Health

December 20, 2015 By OxFSN Webmaster

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

Filed Under: News Archive, Publications, Resources

A Local Experience of National Concern – Report

June 26, 2014 By OxFSN Webmaster

26/06/2014

A new report commissioned by Healthwatch Oxfordshire and delivered by the Oxfordshire Family Support Network (OxFSN) sheds light on the difficulties faced by families seeking appropriate care and support for loved ones with learning disabilities, autistic spectrum disorder and mental health needs or challenging behaviours.

The report highlights the failures in respect of the current system in Oxfordshire and calls on local commissioners to work with families and service users to create services which meet their needs by working with them as ‘experts by experience’.

To read the full report please click on the link here,

A Local Experience of National Concern

Further information is also available by following the link to Healthwatch Oxfordshire.

Filed Under: News Archive, Publications, Resources

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