Taking it personally: One woman’s mission to change her world

For many years I believed that research and evidence would change the world. I spent years doing research on how new and innovative approaches deliver better services and achieve better outcomes. I spent hours in round tables with all kinds of people talking about how we can support ‘joined up working’ and break down silos. I did and transcribed hundreds of interviews and group observations. I read libraries full of books read, summarised and disseminated them.

Then I saw the light. I was working for the Commission on the Future Delivery of Public Services (the Christie Commission) when the penny dropped. Christie showed us that great public services, person centred, effective and empowering, were already with us. Research had been telling us for years the factors that make a difference. The problem was that we weren’t paying attention.   We wanted more robust research, bigger numbers and more proof, even though the messages had been dripping through in small studies and from voluntary and community groups for many years. Why were we resisting the emerging truths? Why were we so keen to hold onto what we knew wasn’t working?

The Christie Commission reminded us all that public services are about people, and that often our best public services happen because people make them happen – despite the system.  It’s not the system that delivers the services, but people with passion and commitment and determination.  I started to take things personally and began to reflect on my experience of services; I’d been carefully keeping the two separated  (or trying to!). I got plenty of food for thought.

For the last decade I’ve been living a double life –   by day a public servant and  for the other 24 hours of the day, a carer for parents with dementia who wanted to live independently as long as possible.  I moved gradually and almost imperceptibly  from an occasional user of public services to a carer with 24 hour responsibility for loved ones increasingly dependent on a range of public services to get by.  The quality and availability of these services controlled my days and kept me awake at night.  I was up close and personal with the reality of public service delivery from the sharp end. It was quite an experience.  

What shocked me most was the complexity.  Despite having worked in and around public services most of my life, I struggled to understand what was going on. The sheer volume of different people and services we had to interact with was scary.  Mum and Dad were defined as ‘complex cases’ which meant we had input from myriad professional groups and services. GP and dental appointments, podiatrists and  opticians gradually escalated to include hospital visits, tests, assessments, treatments, reviews. We had referrals from across the Health Service and social work.

Gradually I had to deal also with banks, energy providers, the DWP, you name it.Every person needed authorised to speak with me, everyone was fixing a different bit, almost no one had a focus on the whole person. Different faces, different buildings, bus trips here there and everywhere. Being old and having dementia is a full time job! I was increasingly enmeshed in a very complex system.  When my parents had falls, the whole system ratcheted up and we added a whole new layer of concerned professionals. I struggled really hard, what must it be like if you’ve got dementia and are managing alone?  How on earth do you find your way to new hospital annexes and departments in places you’ve never heard of?  Even if there are bodies out there to help you, how do you know that? How can you change a lifetime of being independent and taking care of your own life?

I dread to think how my parents would have coped without family support. In all that complexity, confusion, fear and uncertainty the kindness of strangers shone out.  The people who took time to show they care, who understood our confusion and fear, who saw us as people – they helped us more than you can possibly imagine. Being treated with kindness and humanity made an incredible difference to my parents and me.  The world can be a very scary place if you’ve got dementia. A kind word, a gentle hand reassured and calmed my parents, helping them understand and cope with what was happening. It helped me too as I struggled to take on this new and scary role of carer.

I’ll never forget the kindnesses.

Ray, the volunteer from Age Concern (now Age UK) who helped Mum understand why power of attorney was an essential safeguard to protect all our interests. Ray spent months explaining, reassuring and helping Mum make a very hard decision. Without that power of attorney life for us all would have been impossible. Mum having an independent advocate on her side was a very powerful experience for us all.

Sue the health visitor who worked with me and Mum when Mum was opening the door and letting people in. Warning her of the dangers of opening the door made Mum very anxious and confused. Sue designed a cheery smiley sign for the back door reminding Mum to check who was there in a way that made her feel confident not scared. Feeling relaxed made Mum confident, happy and better able to understand her surroundings.

Carol from the Day Centre who helped me find my way through services and red tape and who gave Mum many happy times and awoke a love of singing which has been a great gift along Mum’s journey.

I could go on and on, Fiona, Liz, Diane, Scott. Just a very few of the many people who have helped Mum live not exist.  They treated us as people, with kindness and respect; they treated us like fellow human beings.

The worst times, which I won’t dwell on, were when Mum was invisible. There were times when people walked past Mum as she screamed in pain or sat bewildered all day in her nightie in a side ward waiting to be discharged. I really don’t blame the staff, I’m sure they are all committed, hard working, dedicated and under-valued. But what kind of system makes people like Mum and me invisible? What kind of system dehumanises us all?

So when my full time caring responsibilities abated and life shifted on its axis, I realised that if I’m serious about changing the world, I had to get out there and make things happen. Public services won’t just change on their own, everyone has to take personal responsibility for their actions and I’d done enough research and enough talking.

Time for a change.

• I need to be part of my community, alongside the people ‘out there’ who are making change happen.
• I need to focus on what I really, really care about – improving the quality of life for people with dementia
• I need to focus on connecting with people, building relationships and networks
• I need to be free to respond and react as and when I judge it to be right
• I need to find out how far I can get in changing the world, as a citizen who wants to make things better.

So, I’m setting out to make our local communities more dementia friendly.  We’ve made a start and this blog will help me chart and reflect on my journey. I know there’s lots of inspirational people out there to help me on my way.

Wish me luck!

Take care

Sue