Friday, 23 October 2015

End of life care - speaking notes from Reading Citizens' Advice AGM



I was very lucky to be the guest speaker at last night's Citizens' Advice AGM.  My speaking notes are below:

Thank you for invitation and thanks for the kind introduction.  As Richard said I’m the lead member for adult social care.  Which means I take political responsibility for services that are particularly targeted at the frail elderly and those with disabilities, as well as work that keeps people out of needing formal care services.  I also have the very great privilege people elected to represent Whitley ward.  I like to say is the best ward to represent in Reading.  If you don’t think your own ward is special stop being a councillor frankly!
I am sure you are all well aware of the very challenging times we face as a town.  You don’t need me to dwell on this and obviously a consultation on voluntary sector funding has been part of this. 

However, while I’m more than happy to take questions on that in a moment I don’t want to focus on that.  

I plan to tell you the overarching approach I take as a lead councillor and then to focus on one very specific issue I would like your help with.  I am going to keep my comments fairly brief so as to give more time for a discussion.

Richard’s very kind invitation was one I seized on as I will take whatever opportunity comes to discuss with people about how we can make things work better in Reading including through the council.  As the lead member for adult social care I believe my mission is to find ways that Reading’s residents can live more fulfilling lives as part of their communities. 
That’s not the same thing as providing services – although that’s important.  It’s also not about having the council taking over people’s lives because they have a challenge – whether that’s mental health issues, physical disability, autism, frailty or dementia.  I don’t think that’s what people want and bluntly we can’t afford to do it anyway.  

What it is about focusing on the outcome of a better life for people regardless of their circumstances and what that means for them – but where they are in control as far as possible, while helping people to be safe.  We do have to do that in very difficult environment and I don’t actually know yet how we’re going to set a legal council budget next year. 
We will however set a legal budget and as we do that we need to not lose sight of our goal
CAB and other advice agencies have a huge part to play in what we all want in Reading - helping people in our town live a good life.

But they also have a huge part to play in something else – helping people achieve a good death.

This is an issue that I think we’re all scared to talk about whether publicly or with our own loved ones.  As Reading’s End of Life care champion – a new role – I want to take some of the taboo away about this. 
The work is in early stages but we’re in the process of setting up a working group to tackle the issue and as I see it there are two main areas.  One is to look at the quality of services, pathways and approaches that are available – and there is more out there than you would think.  The second is to help people plan and talk about what care and support they want as they come to the end of their lives in a safe and planned way.  I am hopeful that CAB and others in the voluntary sector will be interested in both aspects but particularly in helping people plan and understand what can be done.
The end of our story is a really important part of our story and if as much planning went into end of life as it does into for example birth planning I think we’d all feel a lot better both for ourselves and our families. 
I have found every time I’ve raised this issue people want to discuss it – from social work staff who want to promote the ability of people to die in a place of their choice to someone in I met from Caversham who is planning to hold a ‘death café’ (google it!).
I believe that a good life should be possible up to the time you die but it requires a change in approach and culture – including from the professionals.  I lose track of the times I hear doctors falling into the trap of suggesting that death is preventable: and I think that feeling that we’ve failed when someone dies regardless of the circumstances is a real problem. 
I am hopeful that by giving people a feeling of control and power about what they want in their last months, weeks, days and even minutes we can really improve people’s lives:  it is of course very different for different illnesses and I think from early conversations the Alzhiemer’s society are particularly keen to get involved.  Advice and support and signposting is going to be crucial for this and I hope to involve the funeral directors, the legal profession and religious groups as well as health and social care professionals.  But the advice agencies and other voluntary organisations will also have a huge part to play.
So there you have it – you may have thought you were going to get a talk on public sector budgets or disability and old age – instead I’ve focused on the even more cheerful subject of death.  

I’m happy to take any and all questions on this or anything else to do with my role.  But in the meantime I believe thank you is the most under used phrase in politics.  So thank you all for the really valuable contribution you are making to the life of our town.