I cant go back to yesterday .....

" I cant go back to yesterday because I was a different person then."

Lewis Carroll Alice in Wonderland

It's all been about women's voices this week. But more importantly than that its been about really hearing them too. As Co- Chair of the Scottish National Action Plan on Human Rights for Health and Social Care I heard the voice of Pam DuncanGlancy explaining why the role of health and social care is about more than providing care, it's about enabling people to live fulfilling lives, however they define that. Thank goodness for active citizens like Pam who articulately challenge us all, on behalf of so many.

I also heard my own Mum take part in a workshop ( its a long story and well done to the compassionate folk of Argyll and Bute Council, NHS and voluntary sector for enabling this). She had joined me on a wonderfully scenic road trip and then came along to meeting I was facilitating, to enable the creation of a person-centred network. Her fragility was evident in every respect but her welcome was warm. She was included and that was enough for me, but when she spoke up at one stage she said, it's important not to treat everyone the same because we are all different. We all heard her loudly. She understood much more than even I had realised and spoke a very important truth for her. It was moving and thought provoking. How rarely someone like Mum would be involved in shaping care for her and others. How often would we assume an inability to engage? I expect we need to learn new skills, patience and methodologies to enable this. We know music awakens engagement, what else is the key or maybe it's simply listening? IRISS have reported research in the Arts and Social Care so maybe the answers lie there?

And for me it allowed me to be fully myself in the workshop. I joked it was a bring your Mum to work day but for me it was bringing my whole self, the daughter, the temporary carer, the professional using yet another form of lived experience to inform my expertise. And what's more we all enjoyed it...in fact they have said to bring her every time but that would be a long way from her own home in England so definitely  not realistic, but deeply kind. Somehow I suspect she will have left her legacy to this network of committed people, it's such an honour to work with them.

The women who joined us at the Scotland's Future Women's Voices event were absolutely fabulous. They questioned, they listened to each other, they learned from each other, they challenged politicians, and they were respectful, intelligent in their expressed concerns. Everyone managed to avoid any tribal politics and made their cases for the issues that mattered to them. I loved every minute of the discussion. There was every age from school children to retired people and if there was any doubt about women being interested in the constitutional debate, there can be none now. As Nicola Sturgeon the Deputy First Minister sat down at our table she was challenged by a range of viewpoints and age groups, it is democracy in action when a school girl can question a government minister. She and Sarah Boyack MSP both acknowledged that parliaments would look very different if they were full of women and that we need to redress the balance more in the future. 

The final cry as they reluctantly left was, “let’s do this again”. Clare Logie Allan and I launched a women's collective that evening called; Scotland's Future: Women through the Looking Glass. You can follow us on twitter @ScotLkgGlass;  we had planned our first event after the referendum but maybe we need one sooner? The women are engaged now and what's important is that as we approach perhaps the most important vote in our lives we are as informed as possible.

I'm increasingly convinced that the road to health for people, communities and nations is their level of involvement in the main decisions that affect them.This political time in Scotland is engaging people in a way i have never seen before. Its changing us-we wont go back I hope. Self- management, engagement and involvement, self- determination or participative democracy are at the core of health and wellbeing I suspect. It does shift power bases at every level. And seeing all of those voices in action this week I'm absolutely sure everyone gains.

Reasons to be cheerful.

It's been a family filled week. Not least the last minute chance to see Robbie Williams with my daughter. As many of you will know my musical tastes aren't normally in the pop genre but it was the ambiguously named Swings both Ways tour and it was great entertainment. Singing along to Angels with Catriona was the definite highlight. The selfie says it all!

The real enemy of humanity

The Kelpies

I spoke to my Mum the other day. She is coming to visit next week and I'm looking forward to it. She doesn't live near us any more, having moved to be nearer to my sister over a year ago now. We spoke of maybe having a day trip to Oban which she would enjoy and that I would take her to see the Kelpies, they have been developed since she left. She will also see her grandchildren and her friend who she has missed.  We will take her some trips down memory lane. She loves a trip to the Botanic gardens in Edinburgh which are nearby.

We might even take her to the beach to enjoy an ice cream outside. Guaranteed to bring back memories of childhood for us all.

She will enjoy times when the Cara the dog rests her head in her lap and brings a calm affection to her. Koshka the cat will offer the odd cuddle if he can sneak in to her room. We will probably seek some old films she enjoys on the TV.

I will do my best to encourage her to enjoy some of her favourite food while she is with us. We will constantly ply her with tea to keep her fluids up. And give her her night time tipple, just to help help sleep of course.

Yes she will ask the same questions many times, she will forget what we have just done or said. She knows us all though, even if she gets a bit muddled on the age of the kids now. No wee ones here Mum I have to remind her. But she greets the reminder lightly and we move on so as not to dwell on it.

She has Alzheimer's now you see. Her long term memory can still bring to mind long lost family and friends and be triggered into fond reminiscence but the recent is left behind quickly. Her diary is a vital contact with daily reality. Written in, to describe each days activity. It's words are a connection to that daily rhythm  that her memory no longer does the job of.

When I call her we speak mostly of the weather, the birds on her bird table, her great grandchildren's plentiful charms. Her pleasure in life is palpable. Her recent return to church a huge comfort.

She is happy, her life better now she has regular support and her daughter there to act as her advocate, coordinator of care, her finger firmly in the dyke to the tsunami of her need. Her carers are kind but frankly not always skilled enough not to heed the "no I don't need a sandwich I can make it myself", to see through the veneer of social competence to the vulnerability underneath. She pays for this care too, from the hard, very hard earned pension and careful savings. It's gradually disappearing as her need tightens its grasp. The rainy day is here.

This week David Cameron said "dementia is the greatest enemy of humanity". This statement distressed me I admit and frankly beg to differ. I do agree we need to do more to rise to the challenge of dementia. We need to understand it better, we need treatments in the form of drugs to relieve symptoms, we need care and support not only for the people affected but also for those who support them. We need to fund properly the skilled care which will enhance lives not merely deliver the minimum. Can we find a cure? I doubt it. Dementia is many conditions, one pill will not cure that. Profit seeking pharmaceutical companies will never hold the only key.

We hold that key ourselves. Low taxes at national or local level are not compatible  with universal care and support when we need it. Paying carers minimum wages and employing them on zero hours contracts should not lead to surprise when that care is poor. We don't value their role in our society.  And turning our heads away from all of this won't take it away either. Demonising dementia and by inference all those affected by it is in no way helpful. And in my view i think its unforgivable.....

People with dementia are our families, our friends, our partners, they are us. They have joy in life too, given the right conditions. We are not just our memories, yes I dread it happening to others I love, but I hope it's an able compassionate community and care system that greets us if it becomes part of our future.

No ,Mr Cameron, dementia is not the enemy of humanity; greed, social inequality and lack of compassion is the real enemy of humanity. It's up to all of us to change that....a pill won't be the cure for that. I only wish it was that easy. But we can change that, if we care enough. And if as a society we are willing to invest in it and do the work. That's the challenge we all face.

Reasons to be cheerful. I hope we can give Mum a bit of TLC when she is with us, that she can enjoy some joyful moments with her family, some special times in the moments they happen. It's a small things that matter after all.

Where the magic happens

There has been a theme of comfort zones  ( or maybe more pushing myself out of them) around for me recently. It's something that I encourage others to do all the time, whether its in coaching, or in my consultancy work or indeed if we are adjusting to illness. What's important is to be open to do that yourself in my position -and to notice your own reactions.

I was chairing a session at  the NHS Scotland event on person centred care; entitled Ask Me Hear Me. One part of the session was two learning consultants from The Thistle Foundation demonstrating live how to approach an interaction in a person centred way. Would I be willing to be interviewed by them they asked, of course my reply. And then I noticed my heart rate increase as that moment approached.

I trusted them so that wasn't the issue, it was what might come up that was a bit scary. A ground rule of not speaking about my family was established which helped and I knew in a person centred way, I would set the agenda. But I also knew that good person centred consulting is challenging, it makes you think, it makes you stand back and see things afresh, it leads you to change, it's not the easy option for anyone. Being a passive recipient of care demands so much less in some respects and also you can choose to ignore advice, especially if it's not taking account of your agenda.  But when you identify it yourself, it's down to you...but with the support that's right for you.

So did I learn anything? Yes I learned its scary to be out of your comfort zone and I would only have gone there with people I trust. And that I can't expect others to do what I won't do myself; to let myself be vulnerable.  A question about how I thought my clinician felt when he enabled me to make my own decision, which was to refuse treatment ,was very revealing for me. I realised how hard that must have been for him and he didn't burden me with that at all. I'm so grateful to him for staying with me and not wanting to just fix me. I realised then we need to give support to all when we work in this way, letting go of power dynamics and fix it models expose the professionals to their own vulnerabilities too. I won't forget that.

This week we have also been able to publicise the event on June 25th Womens Voices-Scotlands Future for women to engage with the constitutional debate, in a way that gives women more of a voice in this process. The panel has Nicola Sturgeon MSP and Sarah Boyack as well as Ann Henderson STUC and me.Gulp! I'm very much looking forward to it, whilst also recognising its also a bit outside that comfort zone again. I have spoken in public before and been part of many panels but generally that has been around leadership or health and social care, but I'm looking forward to this fresh challenge-I think! What I can guarantee it will be stimulating and I hope we will all learn about how as women we can influence a future Scotland, whatever its hue.  Here is the link if you are keen to take part too,be good to see you there.

My reasons to be cheerful are that I ended this week on a trip to beautiful Argyll as a guest of Argyll Voluntary Action, for their discussion on integration and for their volunteer awards.  My role was two fold, be part of a panel and presnt awards, how could I resist! The panel was answering questions on health and social care integration, the questions were challenging and insightful from the volunteers. People power at its best! Later I was privileged to give awards to the impressive regional volunteer heroes.

The proud award winners

But it was probably the spontaneous applause for Colin that moved every one of us. Not least his Mum who said to me volunteering has given him so much confidence and and changed his quality of life. 

Colin with Ian Welsh CEO of the Alliance

The Mull Music Minds group too were inspiring with their passionate description of the group they have developed for people with dementia and other conditions. They started with a germ of an idea and now each week they meet with themes and sing songs around the theme but every time they finish with the The Isle of Mull. Some of the people who attend are in their 90s and are Gaelic speakers. Singing in their native tongue is so important to them, connecting with those old and precious memories. Here it is. What a wonderful way to end a week and it was topped off by the arrival of these flowers from the fine team at Arthritis Care Scotland. I loved working with them and I'm missing the banter already! Keep up the great work guys and thank you.

Hearing the untold stories?

after the storm

My mission this week was to create the space to write and relax. As last weeks blog indicated it took a few days to achieve this but as ever this beautiful place started to work its magic. And it's as my book was taking shape again I read the quote from Maya Angelou. We a have lost some very special people this last year and she was certainly one of them. Her wisdom, her courage, her call to our humanity, her poetic writing a huge inspiration.

The quote I read was:

 "There is no greater agony than bearing an untold story inside you."    

It really had an impact on me as I read it. Is that what drove me to write my story really? I honesty couldn't describe it as an agony but when I sat down to write its what wanted to come out. I wanted to fully understand and articulate what I have learned along the way. In the hope that the process itself would finally settle some of it in my own mind. And maybe it would help people travelling a similar path or even those caring for or working with someone in a similar situation. What happens as I write is interesting information for me too, some parts are really hard to describe, my emotions still affected by them. I stumble over the chapters of my life that were painful and still are. But I admit a lightening of the burden as I leave them behind on the page.

There is no doubt that my experience has also shaped my working life, initially when I was still nursing, in my career as a third sector leader and now too in my coaching and consultancy work, especially when it's focused on health and social care. I want what I have experienced and more importantly what I learned to be clearer for me so I can use this to further inform my work.

Next week I have the honour of chairing two sessions on person centred care at the NHS Scotland event. The title is Ask Me, Hear Me to reflect that to improve care compassion and kindness in themselves are not enough, unless we ask people what matters to them and respond to that, we can't provide person centred care. We aim in the session to show people that just behaving differently , involving more and connecting differently can have a profound impact on their wellbeing and on the service. And it's not as difficult or complicated as we think. At its simplest its listening instead of talking and at its most challenging it's letting go of traditional power dynamics in health and social care and sharing the responsibility with those other experts, those living with the condition or in need of the service. It's about connection and trusting that people and communities need to find their own path to well

being and its our role to enable that. To ask, to hear, to enable, to let go.

In reflecting over my time in and out of wellbeing these other words of Maya Angelou also resonated.

"I've learned that people will forget what you said, people will forget what you did, but people will never forget how you made them feel."

I have learned the truth of that. And I'm not going to focus on the ones I remember for all the wrong reasons, but the ones who made me feel cared for, listened to and those who helped me find my own path back to health. My deepest thanks go to those who connected with me as a person and allowed me to follow my own truth with their guidance. They are the people who have helped this wounded healer back to a place of wellbeing and with a deeper understanding of what really matters to me and to others like me. What a rich and life enhancing process that can be for people and communities too. Can we be courageous enough to make that the norm for everyone?