Tuesday, 12 April 2016

For sarah...rest in peace

For Sarah

This fucking disease has no shame

It took the twinkle from your eye

That brand of fire and humour

That didn't flinch from the truth

When we first spoke

Me in Shetland for one job

Testing the waters of

A new one

I'm 12 years on from my diagnosis

I'm 10 you said

Was there a belief of safety

In that exchange?

Your warmth and passion

Sealed my path

But a few short years later cancer

Changed both our paths

But I'm here - you're not

There is no sense to that

No warm words of consolation

No bright side

A light has gone from here

I hope it's burning brightly again

Free from pain and distress

Laughter its language

Rest in peace with loud purrs x

Monday, 28 March 2016

Emphasising humanity

Emphasising humanity

I'm in an unusual position just now. I'm transitioning from convalescing after treatment for breast cancer again to engaging back with the external world of life and work. It's always a challenging stage and I feel I'm pacing out the boundaries of what helps me return to all that life holds and what keeps me well. I suspect it will be a lifelong challenge. And one I share with many others.
But my work is in the field of health and well-being and there's a different lens I'm seeing that world through just now and that's really very valuable. There's something fine tuned to seeing what really matters and equally being aware of what doesn't. The report on the national conversation on a healthier Scotland was launched recently and also I have been part of discussions on bringing the Buurtzorg model to Scotland as well as exploring what we can learn too from the Alaskan NUKA model. It feels like there is a shift happening and my sense is that we have an opportunity to really respond to that. The consultation that happened across Scotland's many communities drew out some strong and compelling themes.

  The need for a greater focus on preventing illness through education and support to help us make healthy lifestyle choices;
  The importance of mental health and wellbeing and the role of connected communities and good support networks as part of that;
  The themes of person-centred care, support to self-manage health and the importance of a holistic approach;
  Increased awareness of the full range of social care services and how it benefits different people, along with recognising and valuing the important role of unpaid carers;
  The need for more accessible and flexible services, better partnership working and joined up care, and an easier way of signposting people to whats available;
  Recognition of the challenges ahead and the need to set clear priorities for the future.

These are hugely important themes and what is key now is to have the right culture and context for these themes and our people to flourish. The Buurtzorg model prioritises Humanity over Bureaucracy and my sense is that needs to be the priority for us in the here and now in Scotland as integration becomes the new norm and we set out the direction of travel for the next phase of health and social care. The NUKA model which emerged from a health care system in Alsaka that was essentially broken created a new platform to enable health and wellbeing in its community using the WELLNESS acronym as core concepts.

Core Concepts
Work together in relationship to learn and grow
Encourage understanding
Listen with an open mind
Laugh and enjoy humour throughout the day
Notice the dignity and value of ourselves and others
Engage others with compassion
Share our stories and our hearts
Strive to honour and respect ourselves and others

The strong theme of humanity is common to both of these transformational care organisations. Although person-centredness is a key commitment, whats less evident is of the system working in a way that supports this in its people as well as those it serves. I hear signs of the stress in the system that in many ways is understandable going through a huge transition like the integration of health and social care. The focus perhaps inevitably has been on structures, roles, systems and so on but it's the people who will make it work. Its the people who need to share that vision of the future and know they will be supported to prioritise it.Its the people who will make the transformation. And to do that they will need to lead and work from their humanity, not as too often can be the case, feel the need to hide it.
The recent Think Tank we hosted at the Health and Social Care Academy had a rich discussion about what will enable this kind of change. Emphasising humanity was one of the themes. And from where I'm sitting with a foot in recovery from cancer and the other foot in enabling transformational change in health and social care nothing, absolutely nothing can be more important than that. So come April 1 when the integrated boards become legal and as we shift to implementing the recommendations of a healthier Scotland I call on them to emphasise humanity over bureaucracy and show courageous leadership ( another of the themes from our think tank). Leadership that listens and responds, that supports innovation,that knows success comes from failing too, that trusts more and puts the people at the centre, throughout the whole system. And if they also emulate the core WELLNESS concepts from NUKA ,I'm absolutely certain everyone will benefit and we will achieve a flourishing health and social care system.

Friday, 11 March 2016

Grief and Gratitude

There has been a strange rhythm to the last few weeks. We have had two bereavements in the family. Both long lived but nonetheless mourned by those who loved them. I've struggled to get my equilibrium right in this time, concerned for others and keeping a weathered eye on my self-care. And getting it wrong regularly.

Any loss of course evokes our own grief and reminds us of our own mortality. Standing by a grave side recovering from cancer is not easy for anyone concerned. The demons I'm fairly good at chasing took over for a time. The "how long", "what if's" returned and how life sapping that is. I've endeavoured to return to being in the moment and mostly I can do it apart from when I don't feel good; then its harder.

I have shared other people's huge relief for me not to have needed chemotherapy but it hides a recovery that's not without its challenges. I still need regular pain relief from my surgery, I'm taking anti-oestrogen tablets for five years ( with more to follow) that give me rotten side effects, like joint pain and breathlessness. And I'm pretty wabbit to use an old Scots word (adjective(Scottish) weary; exhausted).

Now, I'm glad that once I have got the makeup on I look fairly well but it hides a reality that paradoxically,I want to hide and want people to be aware of too. I wrote a blog before when i was recovering from surgery about feeling I should have a T-shirt saying "I'm not very well you know". It would be for the days I want people to give me space especially in public transport, to give me time if I can't rush, to smile and pat me on the head like a Labrador ( well maybe not that but you get my drift? )

We don't always look unwell, even when we are, and our busy, noisy, clamouring world can really impact on us when we are tender. Gone are days when folk who are ill or grieving get to lie on a chaise lounge or winter in Switzerland, we go back to work or are expected get on with our lives and the pain too often gets dug in. When benefit systems are so inflexible, pensions delayed well into our late sixties and jobs so uncertain how can people hope to heal properly? Where is the space in our lives to recover now? Somehow though  we need to find that space and time. 

But for all that this time has also been the reminder of all that's important in life. A Mother's Day visit to my Mum was precious.As was a morning ( slow) walk in the cold, snow dusted spring day to a nearby lake. Watching Cara the dog swim joyfully and not want to leave was quite magical. 

So I'm enjoying life, trying to grab it with both hands and doing my best to pace myself. Some days I even manage it. It was in that spirit I booked tickets to see Carol King play the whole of Tapestry in Hyde park in July. I was tearfully delighted when I got them. Here's the title song, Tapestry which I've long thought I would like to play as I say my goodbyes.....but not for a good while yet you understand! https://m.youtube.com/watch?v=s7q-1OAbNXg

I read this poem this week and it really captures with beauty the spirit of gratitude I feel just now. Hope you enjoy it, its by the wonderful Mary Oliver ...

The Place I Want to Get Back To

is where

in the pinewoods

in the moments between

the darkness

and first light

two deer

came walking down the hill

and when they saw me

they said to each other, okay,

this one is okay,

lets see who she is

and why she is sitting

on the ground, like that,

so quiet, as if

asleep, or in a dream,

but, anyway, harmless;

and so they come

on their slender legs

and gazed upon me

not unlike the way

I go out to the dunes and look

and look and look

into the faces of the flowers;

and then one of them leaned forward

and nuzzled my hand, and what can my life

bring me that could exceed

that brief moment?

For twenty years

I have gone every day to the same woods,

not waiting, exactly, just lingering.

Such gifts, bestowed,

cant be repeated.

If you want to talk about this

come to visit.  I live in the house

near the corner, which I have named


~ Mary Oliver ~

Wednesday, 24 February 2016

The WASPI debate-one womans story

Just sayin!
I decided to tune into the discussion in the House of Commons to listen to the debate  about the change to women's pension age. I'm not sure it was good for my health given my current situation as someone recovering from significant surgery for breast cancer. Political point scoring was not what i was looking for, it was the recognition of the need to redress a wrong- a contract unfairly changed.
It's my third diagnosis since my thirties. And each diagnosis has had an impact on my ability to work and on my caring responsibilities.
I was born in the 1950s and recently celebrated my 60th birthday, just two months after finding my cancer had returned. In my twenties I had my children. I decided not to take maternity leave as in those days we had little maternity pay nor child care options and as a nurse I did some work (unpensioned as it was a few hours only) so I could care for my family and use my skills in a job that I loved.  I claimed no benefits (I never have) and worked when I could. My first diagnosis of cancer was when my children were at school. I worked part-time and was studying for a masters degree (self-funded) while having treatment with minimal sick leave. I paid for care to support my children to supplement my own care while I was ill . My father was very ill so I did my best to support my parents too. My health meant I needed to work part-time for several more years than I would have planned. By my second diagnosis my career had developed and I had worked full time for several years. I was working full time as a director for a UK charity, travelling between Edinburgh and London several times a month. I found the impact of further treatment reduced my well-being to a degree I could no longer continue in the job. I felt I had no option but to leave. That decision was influenced too by my mothers decline into dementia and her increased need for support. I decided to become self employed and was fortunate to have the experience, the skills and network that allowed me to secure work that I love while taking  more care of my health. I'm aware that I have options that many women would not have. But the reality is I am the main breadwinner ( my husband has already retired)  and our income dropped in a completely unplanned way. I was also no longer contributing to a private pension scheme. And please note I would not have been able to claim any benefits. I have always worked hard; full time when I was able to and part time when circumstance required as well as contributing regularly as a volunteer in my community.
So bringing my story up to date, as my business has gained respect and stability, but unfortunately I have yet again been diagnosed with breast cancer. Again I have no entitlement for support from the state and it comes at a time when I have reached 60 with the knowledge now that I won't receive my pension until I'm 66. Frankly I'm no longer confident I will get my state pension at all given my medical history.
I share this not to seek your sympathy but merely to point out issues for women like me who have by necessity  worked part-time at stages in their lives, who have been carers, who have grafted since leaving school but feel the injustice of the changes to pension when I have not been able to adjust my plans to allow me to make appropriate retirement arrangements. I mention my health history to also highlight that for women like me there is a double whammy when the benefit system is such that there is no safety net for those who don't qualify for either pensions or incapacity benefit.
I understand the need for equalisation but we have not had equal experience of, or opportunity in the workplace throughout my lifetime. I write this blog not just for myself but for the many women who have only had low paid work throughout their lives and therefore will also not benefit from the new pension arrangements or from private pensions. The WASPI campaign is not asking for sympathy, nor for favours but for justice. This Westminster government likes to talk about supporting grafters, well from one grafter I feel unfairly abandoned by a society which for a large part of my lifetime stood by and accepted the unfair treatment of women. There is an opportunity to give practical transitional help to a group of women caught between two worlds and unable to influence either. Any government that refuses to do that will never be forgiven in the face of a very just campaign.