Keeping Me At The Heart of Care

Keeping Me at the Heart of Care

This is an invitation to an event on the 12th of June to make people’s care and support better. It goes out to all health and care staff, all advocates, all with a commitment to change. We want you to be more able to address people’s lack of access to healthcare, and to  make use of the viewpoints that keep people at the heart of their own care. Booking details for the event are at the bottom of this page, but first we need to what the problem is, how big the problem is, and what needs to change.

The problem?

This event is part of 107 days of action – a campaign that, in response to the avoidable death of Connor Sparrowhawk whilst in an assessment and treatment unit, seeks justice for him, his family, and others in care settings. Why don’t you go and find out about Connor on his mum’s amazing blog? That’s how I first came to know of him, under the name Boy or LB. Connor was 18 years old when he died. His mother’s concerns about his epilepsy were ignored. The unit where he was placed had no plan in place to deal with his epilepsy. The report of the investigation into Connor’s death by the independent organisation Verita, included the following findings:

  • That Connor’s death was preventable
  • That there were significant failings in his care and treatment
  • That the failure of staff to respond to and appropriately risk assess Connor’s epilepsy led to a series of poor decisions around his care
  • That the level of observations in place at bath time was unsafe and failed to safeguard Connor
  • That if a safe observation process had been put in place and Connor had been appropriately supervised in the bath, he would not have died on 4 July 2013

Put simply, people’s healthcare needs are not being met, their voices are not being heard, and the endpoint is that people die. Needlessly. That this could happen once is awful. That it might happen repeatedly is unacceptable, surely? Yet that is the case.

A big problem?

Too often, the physical health needs of people with learning disabilities or mental health problems are left unattended, and the consequences can be horrific. In 2007,  Mencap launched a document called Death by Indifference highlighting the deaths of people with learning disabilities caused by poor access to healthcare. in 2013, the Confidential Inquiry into deaths of people with a learning disability found that 37% if deaths could have been prevented by access to physical healthcare. As a result, Mencap estimate that 1,200 people with learning disabilities die needlessly every year. At the same time, the Care Quality Commission report on Monitoring the Mental Health Act showed only 74% of wards demonstrated access to GP services, and only 69% if patients registered with a local G.P. The report detailed instances of people’s clear physical health needs being ignored by nursing staff. These findings of the downplaying of the importance of physical health, the reduced access to basic healthcare services echo  the casework of many mental health advocacy services. Given that there were 50,000 uses of compulsory powers of the mental health act last year, how many people will not have had good access to healthcare? 10,000? 12,500? This issue is compounded by the way in which those who speak up for people in care are too often ignored or marginalised. This was certainly the case for Connor’s family. Yet we know that people who have more people looking out for them have better care outcomes, are at less risk of abuse. So what is your responsibility to make sure those voices that keep people at the heart of care make it through? What is your responsibility for the physical health of people in  cares settings?

The event – Day 85 – June 12th

We know something needs to change. So do you. So you’re invited to join us for a symposium – Keeping Me at the Heart of Care. There we identify your role in keeping people at the heart of their care, barriers to this and how to overcome them.

  • Venue: Cockpit Arts, Holborn, London WC1N 2NP
  • Date:    June 12th
  • Time:    1:30 to 4:30.
  • Cost:    £50  (subsidised bursary places also available)

Any profits from this event will be donated to the Justice for LB fighting fund.

Book here


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