Saturday, 15 November 2014

Still feisty after all these years...

I come from a long line of feisty women. No surprise there I hear you mutter. And mostly it serves us well. My Grandmothers lived through two world wars, deep recessions, losing babies and teenage children even and then widowhood. These were such tough times.
 My own mother in some ways had it easier; better times and better medicine eventually made her life more comfortable, her own babies safer. But she too lived through her teenage years in a town that was relentlessly bombed during the war and that left its scars. Her evident fear during a storm a testament to those early years spent in bomb shelters.

This week has found me in deep reflection about the past. November 12 was the anniversary of my fathers death. Twenty years have passed and perhaps it's juxtaposition to the Remembrance ceremonies, with that 100 years commemoration of the start of the war that was to end all wars,that made it so poignant. We came upon this wonderful tribute from his home village on return from serving in the war. 

So many lives changed by that war and others. This of course was the stimulus for our welfare state, people no longer willing to accept the status quo. Are we really willing to stand by and allow it to be dismantled with all it stood for? He for one would be very, very angry if he were still here to witness it.

The twenty year anniversary of course is also of my mother being windowed. And although over the years she has spent many holidays with the family, all celebrations shared together, weekends with us all and so on, nonetheless each time she has returned to an empty house. Of course she had her routine, punctuated by time with friends, reading, favourite TV programmes, hobbies and the like. But in the last few years Alzheimer's has robbed her of those and of her fragile peace of mind. The time had come that being home alone was jeopardising her wellbeing and safety. Of course that feistiness served her well but it was no longer enough. And so this weekend she went to try out a care home to see if it would help. The family achieved a remarkable changing rooms transformation on her room. Creating the familiar around her. It was overwhelming at first but she has quickly adapted and is thriving with having company. All fingers are crossed that may even help her regain some of her dramatic weight loss but if not at least she will be feeling safe and be celebrating her regular quiz and dominos success! It has taken support from the family to enable that and it also takes real courage to face the kind of change she has. 

Much of the drive in health and social care is to keep people out of hospital, to stop admission, to enable early discharge and of course that's right. No one really wants to be in hospital. But we are social beings. We need the connection of others. Especially when we are unwell. The milk of human kindness is part of healing and wellbeing. I fear for our future, where single households are the norm and in general we are a more disconnected society. Can we start to find ways to respond to this now?

We do need however to ensure that health policy and personalisation approaches connect rather than isolate people. Prescribing a pill may lift a low mood but it won't stop loneliness. We prize independence but do we also need to relearn interdependence, how to share, collaborate and create together. As family units change so can social units maybe? The answer doesn't need to lie with institutions but within communities too. Of course there will always be a need for increased support as our frailty increases. And our own experience reminds me that we shouldn't fear modern care homes who offer person centred support and kindness when we need it.

Courage comes in many forms, keeping going through the hard times and also knowing when to accept help. The public services role is to support our personal and community assets, not undermine them. If we keep remembering to ask what matters to them we are more likely to respond accurately to the need, not making assumptions that can threaten wellbeing. Yes we need to keep people out of hospital but that doesn't mean the only answer is to be at home alone at any cost. Is there a creative answer to this I wonder?

Sunday, 2 November 2014

People powered reform of health...thats got me singin.

Yet again I have had to engage with the NHS recently and I have been treated with respect, compassion, taken seriously and supported with clinical competence. I'm so grateful to all who play their part. In many ways the system works well for me, especially as I  have a good level of health literacy, given my nursing and public health background. But when it comes to my Mums needs, frankly, its poor. Frail both physically and mentally now she is so vulnerable and without my sisters nearby support, coordinating her care, advocating for her, plugging the many gaps and lack of joined up thinking I really find it hard to see how she would have survived, and certainly not at home.
Aged 86 and well until recent years she has done well, but its heartrending to see her decline now. She is typical, not unusual. Thankfully she and my father saved for this rainy day and it is helping her afford the care she needs but my sister has the finger in the dyke of her need and lives with the constant anxiety of what will happen next.
It's no surprise to me therefore that we have had reports of the pressure on the system, on waiting times, on recruitment, on burnout of staff. I have suggested in the past like others we need to decouple health and social care from politics but let's be honest that's not likely to happen. But the pressures on our health and care system is echoed across healthcare systems in the developed world. The combination of us living longer and therefore developing longer term and more complex needs for care and treatment of course are part of this. So too is the development of expensive treatments that extend and improve life in a way we couldn't have imagined a generation ago. We look on and expect others to make decisions on which drugs to fund, to play God or a kind of Russian roulette to decide who can have the life extending drugs and which we can't afford.
We expect targets to be met at the same time as politicians in Westminster are saying austerity measures cannot be avoided. It's not sustainable to expect both and we all need to be part of the conversation to decide how we improve and sustain things in the longer term; as well as what we are willing to pay to achieve this. There is no doubt that health will become the political battle ground of the next election but I fear that will serve nobody in the longer term.
We need a vision that enables a greater wellbeing for all, that works with individual and community assets not their deficits,we need to bring love and humanity into the whole process of care, and have honest conversations about what we prioritise and what we don't. And we need to stop thinking that changing structures or organisations will solve things, they won't. The best thing our politicians of all hues and nations could do now is get around the table with representatives all of those who work in and experience the service. Then commit to working with them, to really listen and to learn from them to work out the best way forward and indeed what that will cost.
Let's also have the wider civic conversations like we had in the run up to the referendum here in Scotland about our health and care system and recognise that we all have our part to play to support the services of health and social care to thrive. 14,000 people in Scotland did submissions to the Smith Commission, can we harness that engagement around our health and care service and shape together the future service we need?
I think we can, I think we need to. We know this matters to people, let's trust them to understand the issues and  to help shape the future.   
I leave you with the words of that well known optimist Leonard  Cohen for all you who feel concerned that the opportunity for positive change wont come," Youve got me sininging."

Monday, 20 October 2014

Dont die wondering

I learned to nurse in Edinburgh. There is nothing quite like the education you receive in life when you work with people at different stages in their lives. Whilst there are many sad times you witness at a very tender age as a student nurse, there is always laughter too. Perhaps it's a human need to find laughter in the face of so much? But I do think when people connect together in times of stress and illness, bonds are quickly formed that allow an honesty to emerge if we let it. In those points of connection be they through tears or laughter, there is a kind of healing.
It was some of the older Edinburgh folk I remember so well. They were an age group when I was young nurse, who had survived so much. Two world wars had robbed them of family, friends and potential life partners. We frequently met elderly unmarried women who lived alone in tenement flats that became their prisons. But many were made of stern stuff, I used to think it was something in the water here that created such feistiness! Of course they had had to survive through hard years alone in straightened circumstances. Many of course had tales to tell and it's one such woman's twinkly eyed response I recalled recently when we chatted together about her past" pit it this way, hen, I'll no die wonderin' " she confided to me.
We giggled and I said good for you! I loved her honesty and sense of mischief. It seemed a good motto for life...don't die wondering about what might have been.I'm not suggesting a life of things that wouldn't pass the "would you tell your mother" test of course but more don't regret not trying something you would love to do.
I'm not one to rush into decisions and I like to look at all the implications but I know also that the final test I like to apply is will I regret not giving it a go. And if the answer is yes, then I find the courage from somewhere to take the next step.
Cara the lurcher
My challenge is I'm hard on myself as I do that and this week I have been reminded of that. I've been in a bit of pain and finally got some help with it. I had tried getting annoyed with myself, pushing to my limits, ignoring it and even had tears of frustration but finally reminded myself of the teaching on the WEL. In the WEL course we reminded that for life to thrive it needs nurturing. To help us really internalise that process we are encouraged to think about how we might treat a plant or a pet to deepen the understanding in ourselves of how to care for our own needs better. So this week I plan to treat myself like a lurcher! I will have regular exercise, rest as much as I can, eat regularly and who knows i might even do what I'm told.......most of the time!
So maybe the motto for my life needs to be ...don't die wondering but be willing to give yourself a break too? I'm aye learning!
a lazy lurcher day

Monday, 6 October 2014

A change of age unfolds....1000 women find their voice.

Never underestimate the power of a small group of committed people to change the world. In fact, it is the only thing that ever has.Margaret Mead

Elaine C Smith in Perth Women for Independence Event
I came to blogging through my experience of breast cancer while working as a Director for Scotland of Breakthrough Breast Cancer. I set up the organisation in Scotland for Breakthrough and as I had been diagnosed with breast cancer in my thirties and knew for all the change in attitudes towards breast cancer, there was still much to do. When I started in that role I was aware of the power of the breast cancer sisterhood. The shared stories that connected us, the warmth of that bond, the empathy that meant words need not always be spoken to be heard. The power is immense, it's a special kind of healing that emerges as a consequence. When I was diagnosed a second time when I was with Breakthrough I knew secrecy was impossible and that perhaps sharing my story would help others, having the unique platform that I did. And so my blogging journey began. Since then I have plotted surgery , recovery, loss and renewal, I have advocated for change in health and social care, in leadership and in society. More recently too I have even touched on the referendum in Scotland. I have always been a political animal but for the first time in my life I became politically active.
The referendum now has passed, the result was 55% voted to stay as part of the UK so game over and back to how things were ( aside from more devolution on the table of course!).But since this weekend I'm quite sure that will not happen.
We are living in a change of age here in Scotland and I am still making sense of it all, in my life and in my work too.
On Saturday I went to an event where 1000 women gathered as Women for Independence and for Independence for Women too. I witnessed a social movement, a women's movement  unfold and its awe inspiring. The speakers were excellent but the real stars were the women who got up at the open mic session and told their stories. Some were miraculous stories of conversion to YES for independence but perhaps what was most moving were their stories of finding their voice in that process. As someone described one had asked what I thought before. In a process where very vote counted; every voice counted. Many of those voices had never been heard before; no one had listened. One woman described until recently she had been agoraphobic but the through process of her political  and social awakening she not only found her voice, she found her courage too. Her depression lifted as a result and she was able to re-engage with the world. The cheers from all collected said it all.
We were asked our opinions and we gave them with the peer group who organised the event giving commitment that the approach would maintain inclusiveness at its core, that people would be encouraged to self organise as had happened naturally till then. Indeed new groups have sprung up since the referendum and many of those there, had become active since-not before the vote. It's an organic movement enfolding day by day and no one knows what will happen next. The women were clear that this would be a movement that reached out to all women and that they wanted to learn how best to effect change.
I have no doubt this is a social movement as well as a political movement. It's not only the new politics, it's the new world we live and work in. We are still trying to respond to it through existing paradigms and that won't work. Traditional political parties look on with awe and the recent party conferences have seemed strangely out of step. The smart money is on those who will inspire, motivate and enable the community of support with a shared passion and cause.
As someone who has studied public health I was interested to learn that the messages particularly around the gap between rich and poor seemed to be the ones that influenced the vote especially in the last few weeks. It seems that economic and health inequalities are important in this social movement.  The call for a fairer and more equal society is not going away. And what I experienced was a sense of community, an "all of us first" mindset as described by " The Common Weal"
It's not only women of course who are part of this movement and call for change. And indeed it's not only in Scotland. Social media is a powerful tool in this and blogging a key part. As a breast  cancer blogger I'm part of a global network ( see Journey Beyond Breast Cancer) and have made connections across many boundaries. This has enriched my life, connected me in very meaningful ways and I have learned from so many others.  Blogging is only one way to find your voice of course but whats even more important is that we listen to those voices, especially the ones so rarely heard. That's where the transformations in our lives and work will be seeded.
On Saturday I expanded my sisterhood beyond those with breast cancer to an amazing collective of women who want to see a better society. I was so very energised by it and moved to be part of that. Now I'm absolutely keen to be part of  building local networks too.  You can't unlearn what you have learned and recently I have been reminded that we all have the potential to make a difference and together that power is exponentially increased. We are indeed off our sofas now and we are definitely not going back. Watch this space.....