#CQCDeathsReview – Share Your Experience

A week or so ago I wrote a post introducing the Care Quality Commission Deaths Review and my initial thoughts about it. I’m not going to repeat it here, but please do go read it if you’re interested. The aspect of work I am most heavily involved with is looking to ensure families and bereaved relatives have their voices heard, and their thoughts and experiences represented within the review, and any recommendations it makes.

I am not naive to the magnitude of this task and I am totally committed to doing what I can to ensure this happens. I would not still be involved if I thought it was all tokenistic window dressing, or playing at engagement. That said I can understand why some people have trouble believing this review will make any difference, and while some believe that its scope is too limited (I do too – see previous post) and CQC are not independent enough. These are definitely limitations, I am still committed to making a go of it for now though, and am looking for some help with that.

I am very aware that families and relatives are not homogenous groups. Often within a family there are differing perspectives about how, when and whether to engage with healthcare professionals, whether an investigation is required and what role family members should play within that, if family members are informed or involved at all.

Not all family members are likely to share the same view, experience and wishes with regards to participation in an investigation; the same is likely to be said for this work. Obviously, it is in CQC’s interest (and my goal) to engage as wide a perspective of relatives and family members as possible.

I understand that some family members and relatives may have had previously poor experiences of engaging with the NHS and wider investigation systems, including CQC. I will do all I can to ensure that their experiences are captured and not overly sanitised by the review process.

In the spirit of transparency and fairness I wish to make it clear that the thematic review provides an opportunity for relatives and family members to share their experience with the CQC, indeed this element of the review is central to it ultimately being accurate, relevant and useful. However, the review process is not in itself a reconciliation process, nor will it lead to further advances in individual’s investigations or complaints. I want to be up front with family members and relatives about the limitations of their engagement.

Families are under no obligation to share learning, with the CQC or anyone else, yet the review has been commissioned to identify their experiences, so I’m hoping to encourage people to get involved. I am aware that some families have been trying to share how they’ve been treated, their overall experience and learning for many years with a system not willing, or ready to listen. In some small way I hope that the opportunity to share through the Share Your Experience form will capture that.

I am sure, at least I hope, that there are other families who feel that they have had a good experience. Who felt well cared for, fully informed and respected. Who can see that the investigation conducted after their loved-one died, led to changes and improvements. It is equally important that the review hears from them too.

Please share this post and/or a link to the form with any bereaved relatives who have been affected by the way an NHS trust has reviewed or investigated a death, who you think might like to participate in the review or know more about it.

The survey has a maximum of 18 questions, depending on what answers you give. You can complete it anonymously, but it would help if you were prepared to give contact details, especially if you would be prepared to be considered for further involvement. The review is looking at death investigations across the NHS, but with a particular focus on patients using mental health services, or who are learning disabled.

Where can I find out more?

ERG 1 Notes are available to view here

ERG 2 Notes are available to view here

A scoping paper with more information on the background of the review is available to view here

An easy-read summary of this work is available to view here

The review’s page on the CQC website is available to view here.

How can I get involved?

Feel free to drop me an email, or send me a tweet (preferably including the #CQCDeathsreview hashtag) if you’re a family member or relative of someone who has died in NHS care, and you would like to share your experiences of the investigation process.

The first step will be to complete the Share Your Experience form.

Please feel free to share this post with your networks, on facebook or twitter or by email. Please share it far and wide and do get in touch with any queries. Thank you.

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