Saturday, 23 July 2016

An appointment with the NHS.



An appointment with the NHS.



You may not control life's circumstances, but getting to be the author of your life means getting to control what you do with them.” 




Im a health activist and I work as a coach and leadership consultant with a special focus on health and social care. I've been a nurse and health sector charity director and I have done all of this because I'm passionate about having the best health and care possible.
This year I've come through treatment for my third diagnosis with breast cancer and my care for that has been outstanding. Excellent clinical care combined with a compassionate team at all levels.
But that's not been enough as since my surgery I've been disabled by breathless which isn't related to the cancer or evidently to the surgery. And because of this I'm undiagnosed in a system that doesn't deal with this. Without a diagnosis you are lost in a system that doesn't connect and certainly doesn't see you as a whole person.  I've been scanned and tested but still no answers. And all I have are verbal results so I have no ownership of my own information. This is the only part of my life where this happens. Finally a referral to a respiratory clinic was made in May. Well it was mentioned in a letter to my GP and copied to the clinic who didn't trigger a referral as I discovered several weeks later when I called concerned I'd heard nothing.
Finally an appointment came in when I called, so I planned a holiday I had had to cancel earlier in the year as I simply wasn't well enough. You see I know now to not dare to change an appointment.  I'm self employed, an appointment on a day I'm working is loss of income and loss of trust in my reliability. But that counts for nothing in the appointments system. I knew to my cost this already when I changed a CT appointment and got a delay of another 6 weeks.  I'm awaiting another CT as there was an issue that needs monitored and have tried to avert an issue of it arriving when I'm committed to something else but that couldn't be done in advance I was told. So instead I have to wait and risk a delay all over again because I'm not expected to have a life beyond appointments.
So this week as I get excited about my holiday an appointment change arrives for the respiratory clinic and its when I'm holiday. I call up to explain and say I want the one I had but that was cancelled as the consultant is off. With 10 days notice apparently. Now call me psychic but I'm suspecting its holidays. When I ran clinics as a nurse I had to book my holidays well in advance to avoid this very scenario. Is that so difficult here? So the first next appointment was the end of August on a day I have a full team event. I can't do it I said and was told  in that case I had to go back in the system. My NO contained all my frustration and anger at this unnecessary treatment. Finally I got one the next day at the very end of August and an offer of a complaint form. I was also told my unhappiness would be noted so I await my appointment with a consultant already on the defensive. That bodes well doesn't it?
So I'm breathless since January and have an appointment for late August to find out the cause. Frankly this isn't good enough. And part of the cause of this is an appointment system that is inflexible and completely not  person-centred. And the appointment staff who on have occasion have been at best inflexible and at worst unpleasant.
I know the clinic is busy but this behaviour is avoidable. There are many ways to reorganise appointment systems to make them more person-centred. And also if we are espousing a partnership approach, why don't I have my copies of all my results? I know I probably should have got pushier earlier but I didn't because I haven't been well enough. I needed my limited energy for more life enhancing things. And that will be the case for so many in this circumstance.
So hereare some links for those who are accountable for improving care.The evidence that this can be better; it can be improved with the will to do it.

http://fabnhsstuff.net/2016/07/19/55-million-patients-england-set-benefit-accessing-gp-record-online/
And a reminder from me that no matter how good the staff are if the systems aren't person centred then the whole experience of care is affected  and the quality of a persons life is seriously limited in the meantime. I'm hugely grateful for the superb care I have had, free at the point of need but not only is the system letting people like me down but it is letting down the very people who are truly doing their best to plug those gaps. This can be changed with some imaginative thinking, some courageous leadership and frankly some humanity. If you want help to do this, I'm just the person to help. And now I'm on the case, I'm not going away.....

Thursday, 21 July 2016

Cornfields

Cornfields; Ayrshire a poem inspired by a painting by Barbara Rae on exhibit in the City Art Gallery Edinburgh. Thanks to Helen Boden for the stimulus and encouragement. 

Cornfields

The ravens flight
breaks the horizon
the corn threatened
by the coming storm.

They soar like acrobats
caught by the wind
the performance as dramatic as the sky
no net for us they cry.

Tuesday, 12 July 2016

I have a new Prime Minister








I have a new prime minister

I'd gone out
just for the morning
And heard it on the news
Is this
taking back control?


Be glad its a woman-
Remember Thatcher?
I need to know
what she'll do
not her gender

She wants to unite her country
this disunited kingdom
Poverty and place
Power and privilege
Are the hard borders of division

A referendum
I didn't vote for
A result I didn't vote for
A prime minster
I didn't vote for

I have a new prime minister
Who will make me less European
Powerless in my capital city where
75% of us voted
to stay in the heart of Europe

Since June 24 I've grieved
I've puzzled
I've tried to understand
I've looked everywhere
for silver linings

She alone had the courage 
to fill the empty shoes in these turbulent times
She's spoken of  governing
for all not just the privileged
So I'm clinging to some wreckage of my hope   

What  would fill my half empty cup?
A sense of all voices heard and valued
the evidence of compassion for the vulnerable 
the earning of trust
my hope for this new Prime Minister 

Wednesday, 6 July 2016

Compassionate disruption?



This blog is a sort of confession, I'm a wee bit addicted to politics. I have grown up with a belief that democratic politics is a force to enable all of us to have a voice and even when I have at times lost faith I have still been drawn to the possibility of something better.
So this last two weeks have tipped me into a horrible crisis of addiction to news and social media. I have read everything I can to make sense of what has transpired in the UK since voting narrowly for leaving the EU. I have looked under every stone for a glimmer of hope of something better emerging. Now I'm Scottish so that glimmer of hope for me has been our First Minister who has shown a compassionate and strategic leadership that is outstanding and yes reassuring too.
But Westminster politics has left me breathless- literally! I will admit to a temptation ( ok I've given in to it at times) to kick back in the chair, open up the popcorn and marvel at the Machiavellian drama. But mostly I'm sickened by it. It's that behaviour which has led to this situation and it seems the answer to our awful situation is to behave even worse. 
I'm sure there are those who mean well within the parties embroiled in internal warfare but those they have collectively let down are looking on in horror and fear. The roots of this decision to leave Europe go back decades; decades where a whole swathe of our population in the UK has been ignored at best, sacrificed at worst. This they believed was their opportunity to have their voice listened to and they took it. But is anyone listening to it? Not the so-called leaders of the “leave” campaign who have retreated into the cess pit of their own creation; leaving the rest of us looking on with something akin to despair and most certainly with disbelief. I can’t be alone in feeling overwhelmed.
And now the Chilcott Inquiry report delivers its verdict and my head is finally in my hands. I’ve tried to find ways to communicate my feelings but frankly I can’t find the words. No words are enough and anyway it’s a visceral loss; a grieving for a different time when the needs of people not neoliberal ideology shaped our decisions and for a time when the political elite in Westminster earned our respect and support.
 
Thankfully this weekend in Edinburgh there was a moment when we were able to believe in our better selves. This section of the First Minster’s speech helped me lift my head higher. She described a Scotland I could recognise and be proud of;

“We are the grandchildren and the great grandchildren of the thousands who came from Ireland to work in our shipyards and in our factories. We are the 80,000 Polish people, the 8,000 Lithuanians, the 7,000 each from France, Spain, Germany, Italy and Latvia. We are among the many from countries beyond our shores that we are so privileged to have living here amongst us.

“We are the more than half a million people born in England, Wales and Northern Ireland who have chosen to live here in Scotland. We are the thousands of European students studying at our universities and our colleges. We are the doctors and nurses from all across our continent and beyond who care for us daily in our National Health Service.

“Whether we have lived here for generations or are new Scots, from Europe, India, Pakistan, Africa and countries across the globe we are all of this and more. We are so much stronger for the diversity that shapes us. We are one Scotland and we are simply home to all of those who have chosen to live here. That is who and what we are.”

It’s tempting to resort to blame and anger at this time and I absolutely understand the impulse. But these are emotions that are not only destructive to the individual over time; they are destructive to reflection and learning; they are destructive within communities and they do not move things forward. Indeed the risk is that they leave us compounding the issues.
I have found myself revisiting this quote this last couple of weeks. And I share it with you now. In particular it reminds me that if we want to see a more compassionate world then we need to reach out with compassion and not judgement. The truly disruptive and transformative work we can do just now is to show compassion and consider as we do realign ourselves to transform things for the better; as Lao Tzu also said the best fighter is not angry. 


Sunday, 19 June 2016

Love matters and not just on fathers day






It's Father's Day today and I posted a photo on Facebook of my Dad as a young man. Full of life, starting out in his career in the Royal Navy, with a hint of the twinkle in his eye that we all remember. He served his time during the Second World War and saw more than a young man should of death and learned things about an imperfect world which shaped his politics and in time my own.
He was a miner when I was born but through my childhood he studied and became a safety specialist. He taught us (my sister and I; his two daughters), that education mattered, that we should believe in our ability and that family mattered. He taught us compassion for others and whatever else I knew, I knew he loved us all deeply. He was a man quick to give a big hug whenever you needed it. I still miss those hugs but I see his qualities in all his grandchildren and in my sister and I. He'd be proud of us all.
I still find when there are big political moments I want to pick up the phone to him although he died over 20 years ago. Old habits you see. And this week has been one of them. I know had he still been here, when he heard of Jo Cox death he would have cried as I did. He would have loved her unpretentious  northern working class roots, her fearless telling of truth to power and her compassion for others. He would have been shocked to his core that a man would murder a woman like that. But then he has not lived through this time when social media has provided a vehicle for such hatred and vile abuse towards women in public life.
I grew up thinking all men were like the ones I've been so lucky to share my life with. It still shocks me profoundly to realise how different some men are with regard to women.
I do realise that Jo Cox murder is a complex set of circumstance and that male MPs get horrible abuse too but I don't think we should not lose sight of the fact this was a violent act by a man against a woman; a woman who dared to be in a position of power. This EU referendum campaign has been increasingly unpleasant, with a ramping up of fear and anti-immigration rhetoric that has echoes of fascism that terrify me. We also can't ignore that it was in that context that Jo Cox was murdered. There is a climate of disrespect towards our public servants and whilst there are some who have not earned that respect, the reality is that many have and yet are so often the target of cynical disregard at best. The many parliamentarians I have met over several years are amongst the hardest working and committed people I know. They sacrifice time with family and friends to do work that they are rarely thanked for and are taking risks with their security that most of us would balk at. Main stream media as well as social media play their own role in this climate of distrust.
Yes it's a complex set of circumstance that contributed to the death of a very special young woman and our world is poorer as a result. So there are no easy solutions to where we find ourselves. What shaped the person who killed this wonderful young woman? Extreme views don't evolve from nowhere. The research around adverse childhood experiences (ACE)  would point to the likelihood of a relevant backstory playing a part as well as the febrile political context.
I share the view expressed by Jo Cox sister that there are more good people than not. I agree that love should be our guide not hate; that compassion not judgement should shape our decisions and our policies.
I agree too that we need to ensure that our public servants are safer but would suggest the most effective way to do that over time is to change the culture in which they serve; foster a culture that enables them to do their best work on our behalf and that values and respects equally the contribution of women and men. I would love to see a culture where positive political campaigning is the norm, where everyone has the opportunity to contribute and accountability is the norm.
I know this world is a kinder place than the recent debate would have us believe, In this week alone I have witnessed great kindness in the Contact the Elderly group I volunteer with; volunteers giving their Sunday to not just preventing social isolation in the vulnerable older people but really bringing love, songs and laughter into their lives as well. I also experienced huge kindness personally this week from healthcare staff as well as witnessing great tenderness too for example from a porter to a frail older person as I awaited my appointment. As this woeful referendum campaign draws to a welcome close and we move into whatever context that emerges, I really hope we can drown out the negativity and make that kind of compassion shape our future. For all our sakes. I'm immensely grateful that family life has taught me that love will always outshine hate. To all Dads and Mums out there who teach their children the same, thank you, you're shaping the kind of world we will all thrive in.