Together we can do SO much

With over 200 blogs on D4Dementia, some of them now 7 years old, I've decided to spend my 2019 year of blogging by re-visiting some of the topics I’ve covered previously, throwing fresh light on why they remain relevant, and updating them with some of my more recent experiences. This month, I want to look at improving care and support.

In October 2014, I wrote a blog entitled 'Inspiring end-of-life care'. In that blog I talked about my experience of speaking at the Alzheimer Europe Conference about my dad’s end of life care:

“I hope that the standing ovation my presentation received is proof that my dad’s story can inspire better end-of-life care for other people in the future, and that speaking about even the most difficult topics can be warmly received if you connect with people on a human level. And that is perhaps the most important message of all: we have great caring qualities as human beings that have the ability to change lives at every stage of life, even at the end.”

Photo credit: National Care Forum Managers Conference 2019

It is that ability to change lives that was at the forefront of my most recent speech, delivered to the National Care Forum (NCF) Managers Conference earlier this month. Entitled ‘Being a Change Maker for Family Carers’, my speech charted the nine years that my dad spent in care homes. I then went on to talk about the lessons that could be learnt from my dad’s experiences (and ours as a family), and the actions care providers can take to facilitate the person and relationships centred outcomes that are at the heart of care and support.

I want to share some of what I spoke about in this blog, just as I did in my ‘Inspiring end-of-life care’ post, for anyone who wasn’t at the NCF conference and indeed to remind those who were there what I talked about:

Lesson 1) Choice is important

“In the aftermath of dad’s diagnosis, when he was still in hospital, we were given no option to explore homecare or live-in care. I’m not saying we would have definitely chosen those options, but I advocate now for choice in care provision because I believe it is a fundamental right. Families should know about all of the options and ways found to facilitate their preferred option rather than being told, as we were, that there is only one option.”

Lesson 2) Understand and empathise

“We had no idea what to look for in a care home and what the ‘right’ questions were to ask - we didn’t want to choose the wrong service through ignorance. Simply knowing you want the best care for your loved one isn’t enough knowledge to make an informed choice.”

Lesson 3) Build Trust

“The problem with trust in social care is it’s very fragile. We trusted the staff, but many of those staff were bullied into leaving when the successor to Southern Cross took over the home. Over the years, we’d trusted owners who promised to invest, but none really did what they promised. The last owner destroyed all trust by investing in the environment rather than the people. And of course it’s people, it’s the quality of that human factor that is so important. A hotel environment is just window-dressing if the care and support just isn’t there.”

Lesson 4) Recognise needs

“We talk a lot in social care about needs. But what about the needs of family carers and families? Perhaps most notably is the need to feel listened to and understood…For many family carers in particular, their needs will also include the need to be partners in care. 

I think it’s important here to also consider what care providers need….I would suggest that most care providers would say they want their staff to be treated with respect, to be told at the earliest opportunity if there are problems and be given the chance to rectify those issues, and for communication to be open and honest.”

I finished my speech with this quote from Helen Keller:

“Alone we can do so little; together we can do so much.” 

My speech didn’t end with a standing ovation, but if anything it was better than that, because so many people came up to me afterwards to thank me, talk about what I’d said and tell me how they would be aiming to implement some of my actions. In the days since the conference, I’ve had so many social media and email messages expressing similar sentiments. A compilation of some of the feedback I’ve received is on my website and this blog from the NCF's Policy, Research and Projects Officer, Nathan Jones, also includes a review of my session.

In the 7+ years since my dad died and I’ve done the work I do now I’ve never felt I inspired an audience so much, potentially becoming the catalyst for positive change within numerous social care services. It’s led me to the conclusion that whoever we are, we all have the power to be change makers. 

In social care services, it isn’t just managers and care staff, but ALL staff who can be change makers. In wider society, from bus drivers to bin men, nurses to beauticians, researchers to supermarket checkout staff, we can all be the change we want to see. 

For me that change is a society that comprehensively supports everyone who needs social care (electioneering politicians take note!) and that, specifically in relation to people with dementia, ensures that rather than providing care that I can pick apart, find lessons to learn from and actions to implement is simply a celebration: of doing anything and everything that makes a person’s years with dementia the very best they can be.

Until next time...

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