Dying Well Community Charter Group

In the HealthFirst Liverpool Group we are doing lots of work around healthyand learning how to keep ourselves healthy.  But it is also important to talk about dying and making sure that people with a learning disability are treated with the same respect and dignity as everyone else and our voices are heard.

Lisa Frith attended the Dying Well Community Charter Group that is being facilitated by Sam Clements from the Liverpool Clinical Commissioning Group.  The aim of the group is to be a working group that will take the lead managing the implementation of the Dying Well Community Charter to partner organisations across Liverpool and to get organisations and community groups to sign up to the Dying Well Charter and embed the Charter within their policies and procedures.

We went through the Terms of Reference and were happy with these.

It was really interesting as people have different ideas of when the “Dying Well” process should start, how far in advance should we plan?   The group know that everyone is unique and it can be hard for providers to have the conversation with families who are bereaved about what they want and need.

Lisa talked about the CIPOLD report – this is the Confidential Inquiry into the Premature Deaths of People With a Learning Disability and it shows that people with a learning disability are far more likely to die of treatable conditions than a person without a disability.


Lisa also talked about the “Death by Indifference” report from Mencap https://www.mencap.org.uk/sites/default/files/documents/2008-03/DBIreport.pdf

Lisa said “I’m really excited to be involved with this group from the beginning.  It is really important to me that people with a learning disability are listened to.  I’ve been working to make changes within Health in Liverpool for 5 years now and I am happy to talk about death and dying – it’s not nice but it is important.  I feel people should be able to talk about their plans and wishes.  One of my friends buries her head in the sand and doesn’t even go to friends funerals.  She really struggles.  I feel that actually funerals should be a celebration of someone’s life and I hope that when it’s mine people will talk about me in a positive way, to remember that I’ve worked hard to change the health services for people with a learning disability in Liverpool and that Dr Who did in fact come along at some point in my life to whisk me away in his tardis!  My biggest fear is I won’t have control or be told the truth, that people will make decisions without talking to me because they think that as I have a learning disability I won’t understand.  Believe me I do.”




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