Friday, 18 July 2014

It will last as long as there are folk to fight for it...the NHS

I grew up in the NHS, even before I left school I tested out my future career by volunteering. I was smitten from the start. That sense of community, of working for a common good and being able to make a difference some times in a small way, sometimes in a huge way. Yes it's tiring usually, stressful often, the shift-work a pain but the satisfaction a balancing point usually. But I wonder if things are balanced now?
Levels of stress, of workload, of pressure from targets and- in England at least- endless reorganisation that has no apparent value or indeed common sense at its root, are taking their toll.    
The workforce is struggling that much is evident. What is amazing in a way is how much great work is done nonetheless; day in, day out. The evidence of cost effectiveness of a national health service is plentiful, we know its not perfect but its nonetheless impressive. Its part of our psyche, part of what we are proud of as a nation; be that UK or Scotland.
As regular readers of my blog know I have had many opportunities to be grateful for the work of the NHS and indeed to challenge it to be as good as it can be. I have twice had treatment for cancer and I haven't had to "break bad" to pay for it. Haven't had to see myself be financially crippled through bills (unlike my peers in the US in particular) to protect my long-term health. Of course I have had many other impacts and some of them financial but its not from paying for healthcare. I also know I would stand at the barricades to defend the NHS and its principle of free at the point of need.
But I look at the situation in England and see the integration of healthcare being fragmented, see private companies in the business of profit moving in to improve a service we are told and I see a situation when the tax payer funded sector is starting to fund private healthcare sector who are accountable to shareholders and not those who pay for it and I wonder where will this end? As it slowly shifts to private sector delivery, what is the logical next step in England?
I notice in myself a tendency to cross my fingers that this could never happen in Scotland. Health after all is devolved. And we have given commitment in Scotland to staying with a model of collaboration, of integration, of ensuring the voice of lived experience helps to shape not only the person-centred one to one care but also the service improvement. I applaud this and like to think I , along with many others have helped to influence this. And we see the positive impact of investing in self-management, of the reality of how involving people truly shapes policy and practice in a person-centred way, unencumbered by reorganisation, that is at best a distraction, at worst decimates a service that was previously successful.
How fragile is this approach however although it currently has collective support, a policy we sign up to and are still admittedly finding our way with. But as policy elsewhere in the UK shifts and changes how much does that create a tension that is unsustainable? How much does that shifting budget, between public and private, impact on how Scotland's budget is allocated over time? The budget then becoming the driver of a policy we don't want?
The political discussion around the referendum in Scotland has only recently shifted to focus on the NHS. And at first I was probably guilty of complacency. The policy here is so different, cross party consensus in health is fairly solid in most part but as I have looked at the question of divergence and budgets, my concern has grown.
I heard it said recently that so many in Scotland are "aff their sofas" and engaged in this vital constitutional debate. What I would urge us all across the UK to do is get "aff" our collective sofas and join in the battle for our NHS. Let's not be guilty of only realising what we had after we have lost it. But equally we shouldn't worship at its temple, more importantly we need to help it evolve, improve and be truly responsive in partnership with those it serves. Maybe we all need to be willing to properly invest in it too. And finally to ensure that those who govern are properly accountable to us for our health service and not impose policy that we didn't vote for and don't want; whatever our nation is now and in the future. 

Reasons to be cheerful: the sun is shining and I have worked with some super people this past few weeks. Not least in my first experience as a speaker for Women for Independence. I loved the engagement of the audience and the passion of those with a vision for a more socially equal and just society. It's inspiring to be part of this movement for change.

Thursday, 10 July 2014

Are you living in the now?..a poem for a Friday

I heard this poem read out last night and thought it was a great one to share. What would I do if I could live my life again, I wonder?.......

Moments by Jorge Luis Borges

If I could live again my life,
In the next – I’ll try,
- to make more mistakes,
I won’t try to be so perfect,
I’ll be more relaxed,
I’ll be more full – than I am now,
In fact, I’ll take fewer things seriously,
I’ll be less hygienic,
I’ll take more risks,
I’ll take more trips,
I’ll watch more sunsets,
I’ll climb more mountains,
I’ll swim more rivers,
I’ll go to more places – I’ve never been,
I’ll eat more ice creams and less (lime) beans,
I’ll have more real problems – and less imaginary ones,
I was one of those people who live
prudent and prolific lives -
each minute of his life,
Of course that I had moments of joy – but,
if I could go back I’ll try to have only good moments,
If you don’t know – that’s what life is made of,
Don’t lose the now!
I was one of those who never goes anywhere
without a thermometer,
without a hot-water bottle,
and without an umbrella and without a parachute,
If I could live again – I will travel light,
If I could live again – I’ll try to work bare feet
at the beginning of spring till the end of autumn,
I’ll ride more carts,
I’ll watch more sunrises and play with more children,
If I have the life to live – but now I am 85,
- and I know that I am dying …

Saturday, 5 July 2014

Power in the right hands....

I have noticed that of late I have had a tendency to look at less mainstream media, trusting more the authentic voice that I read in a range of social media. I know it's often from one perspective or another but it's honestly so, it's a viewpoint I can opt to take or not, to sharpen my understanding. I don't read rants from choice so it's the measured pieces I seek out, the thoughtful, and the questioning. I'm not saying mainstream media never contains  those but it does feel like you do have to search for them. Like others I have felt frustrated by the lack of balance in the media-at this time in Scotland in particular -but this week has taken the prize for hypocrisy.
It's  because this was the week where Andy Coulson was found guilty of conspiracy to hack phones. As this case and others have unfolded the widespread nature of this has become clear to all of us. So far so obvious....but what really tipped me from curiosity, alarm and concern to downright disgust was its also the same week Rolf Harris was finally found guilty of abuse across decades, of children.
It was the point when I thought, does anyone ever tell the truth? And when people actually do tell the truth, is it only when it's a convenient one do we really listen? Those children and women who were abused and spoke their truth were ignored until now. And many said nothing ( as is the norm in such circumstance,even when the perpetrator isn't a "national treasure"). It's  because they already knew that the power differential meant they would be at best ignored, at worst judged harshly for daring to besmirch a "good" name. Of course a false accusation would be terrible but I can only begin to imagine the pain of finding the courage to tell of being victim of such a personal, lonely and violating crime and be ignored or punished even?
This situation sits alongside a media who hacked phones, who knew which celebrity slept with whom, who got the mobile phone transcripts of the royal family, who hacked the phones of murdered children and yet Jimmy Saville went about his widespread abuse hidden and unpunished.And it takes till now until Rolf Harris is found guilty. It doesn't just beggar belief; it's evidence of whole-scale lies, deceits, protection of the powerful and abuse of trust at all levels.
We deserve better than this; the children who had their lives devastated by this abuse and many others-even at Westminster now we hear-deserve so much more than this. And what's more future generations need to be promised we will never let such an abuse of power be allowed again. We need accountable, open and transparent media and government too if this is to change. We need a more equal society in every respect. We need a society that's more questioning of and less deferential to power in all its guises to enable a healthy culture to flourish. 
But i also need to remind myself that there are good people out there, whose compassion makes a difference in the world. This photograph of a thank you note taken in Edinburgh restores my faith in the inherent goodness of people.

Reasons to be grateful.
In the same week when we celebrate the 66 birthday of the NHS I'm embarrassed to say I have used it twice. Asthma and a chest infection meant a cocktail of treatment and a resistant bacteria required a second antibiotic. By my second visit I felt grim. The young GP was excellent. He not only diagnosed me correctly, treated me appropriately, he informed and empowered me to self manage an acute medical condition; giving me confidence and trust in myself -and in him too. And what's more he was kind. Modern healthcare at its best. Not a paternalistic approach, a partnership one and through enabling me to self manage it was cost effective too. Information, trust and empowerment  in healthcare and in societies is power in the right that's worth striving for. 
Thank you all in the NHS for all you do...from a very grateful customer. Oh and can anyone reassure me? I was supposed to swallow these pills, wasn't I?

Monday, 30 June 2014

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 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, lets 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!

Saturday, 21 June 2014

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.