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Zach Moss 15 April 2014

Celebrating ELRA and looking forward to My Life, My Decision

Last Tuesday we were at the lovely Oxford House in Bethnal Green to showcase the work we have done so far in East London and to talk about the plan for the future.  We had great fun, and everyone else seemed to be enjoying themselves too. The afternoon began with some fabulous scones, cakes and sandwiches and then DanielleDanielle opening Celebration Event Hamm, our Director, welcomed everyone.  Since the pilot was launched in February 2013 we have trained over 600 stakeholders in end of life rights, and provided advocacy support to over 100 older people to help them ensure their wishes are respected, in the event that capacity is lost. Today was about celebrating what we have achieved, sharing some of the lessons we have learnt and hearing about the impact the project has had on East London residents.  IMG_1595Verena Hewat, Community Champion gave the first of 4 short presentations.  Her presentation focused on who’s been involved in the pilot, an overview of our current training modules and some insights into what we have learnt. Verena also provided an overview of the project itself; We were delighted that Cynthia White, local resident & member of our amazing Older Person’s Steering Group was able to join us to share what the project has meant to her. Cynthia’s speech was incredibly insightful and also very moving for the project team.  We were particularly touched by her description of the project;

‘ a genuinely inclusive project with stakeholder involvement . . . . We felt listened to’

Cynthia also shared some recent findings by the Health Ombudsman that many older people are too fearful to ask the health service for what they want.  Thanks to the Big Lottery Fund we are going to be able help to address this, as the pilot has highlighted our approach is providing a voice for older people when they can no longer speak for themselves and is encouraging others to speak up when they can.  The more we raise awareness of end of life rights the more we can help older people & their families overcome their fears as they realise it is their right to express their wishes and it is their right to expect others to respect those wishes.

IMG_1592Vicky Gadd, Advocacy Manager presented an overview of advocacy and how the referral process worked, before handing over to Ann-Marie Kargbo, Advocacy Officer to talk about the influence of culture, faith and media.  And then it was Becky Brown, Programme Development Manager, who shared the impact the project has had on the lives of older people in East London and the delivery of other services.   IMG_1613We’ve shared below some of the quotes that Becky used in her presentation.

‘Doing this work has me think about my mum . . . it’s made us talk about it as a family.  So we have started that conversation about how she wants things and what I want.  It’s got good debates going – what’s your bottom line? what do you not want to happen?’

‘I had been thinking about what to do – you see I don’t have any close relatives – so I thought if there was something in writing, then there would be something for the doctors to refer to . . . For someone in my position, it’s really good to know I can make my wishes known and hopefully nothing will happen that I don’t want to happen . . . . . . just pleased there was a way for me to let it be known’

‘It gives you the confidence to raise the subject because you’ve had that training – you’re not going to talk about something you don’t know about it.  With people I’ve visited subsequently, I’ve talked to them about the training, I’ve talked to them about what i was doing and then what was learnt, and some of them have discussed it with me since.  That’s one of the best things about the training session, it gives you the opportunity to do that.’

These quotes, feedback from the project and our 76 page independent evaluation have all highlighted what a difference we are making by raising awareness of end of life rights and by giving people the opportunity to talk to someone.

The afternoon finished with a presentation to our Older Person’s Steering Group by Debbie Walker, CEO, Age UK East London and a second tea.  IMG_1586 The scones were delicious!

It was a great event thanks to Verena’s excellent organisation and the engagement of everyone who attended.   We would like to thank everyone who has been involved in the pilot, as it was a team effort to secure the £1million funding to enable us to roll it out across England.

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