Sound of the Week 18-03-16

Sound of the Week – 18/03/16

The Fight of Gordon’s Life
Produced by
BBC One Scotland



I am sorry to say this programme is no longer available to view… I watched it only a few weeks ago!  It is the story of Gordon Aikman, a young Scottish political activist who is living with Motor Neurone Disease – MND.  He has completely altered the landscape and opportunities for those living with MND by suggesting more supportive care should be available from the point of diagnosis, no matter the person’s geographical location throughout Scotland.  He has achieved this by petitioning for an increase in the number of non-charitably funded, disease specific Clinical Nurse Specialists throughout each Health Board area, and has, as importantly raised awareness of what MND is and what living with it feels like.

Throughout this programme Gordon invited the world into his private life and into the minds and hearts of his family and friends.  His diagnosis was a shock to all who know him.  His vision of the future at the point of diagnosis was bleak at heart.  From the point of diagnosis, Gordon understood he was living with an illness with no cure and had insight into the significance of such.

He lives and narrates the real truth behind MND and the ever changing consequence of an altered body performance, from being able to walk independently to not being able to walk independently, having the use of his hands to not having the use of his hands.  All four limbs control our lives.  Often we can live without the use of one or two but when all four lose power, the impact is immense.

As I watched this documentary, I found myself thinking about how difficult it must be for anyone living with the knowledge of impending death to remain hopeful, purposeful and strong.  I know it is achievable because of my Hospice experience, where every day we are surrounded by people who live with this knowledge and do so in the most courageous way… living within each moment.  One could only be inspired by his honesty and humility.  I am also aware of seeing regularly throughout each day, mindful courage in the eyes of those we have the opportunity to meet and care for.  I have a deep admiration and what can only be described as an odd envy for those who live and move around such depths of life.

Gordon, unlike so many other people has had his palliative needs identified.  He has been given the opportunity to engage with Hospice Services through what was possibly the Hospice Outreach Clinic and Complementary Therapy Service… he was having his feet and legs massaged… It was a giveaway!

I am delighted he has access to this support, and that he has opportunity to be accompanied by a team of compassionate, knowledgeable, confident professionals throughout his entire journey if he so wishes.

Gordon has demonstrated and eloquently described, through his unique approach to living with MND the benefits of anticipatory care planning, otherwise known as ‘thinking ahead and making plans’.  Each person in Scotland should be encouraged to consider what matters to them now and what may matter as life changes.  Unfortunately life will change for each of us, some, like Gordon, will be given a warning shot and some will die suddenly.  Planning for the warning is essential.   It’s a wonderful way to ensure your care is shaped around your wishes and preferences.

I admire people who whilst in the midst of adversity, advocate for cause and for others.  Gordon has illuminated the important principles of coping with not only MND, but life limiting illness.  He has introduced the impact of MND to his family, friends and work colleagues – the gate keepers to making things happen for people in Scotland – Politicians.  He has had right of access to their eye line, so he is in their vision.  He has had opportunity to meet and petition for what is important, and why not?  We should all petition for what we feel will make Scotland more compassionate, value based and equitable.

The New Strategic Framework for Action on Palliative and End of Life Care beckons us to consider this… health and social care services are being shaped to reflect this… so we should petition this too.

If you had had the privilege of watching this documentary alongside me, I am sure you would feel the same.  Everyone is Scotland deserves to live and die well, whether this be with MND or not.

Useful Resources

MND Scotland Link to ‘Gordon’s Fightback’
Strategic Framework for Action on Palliative and End of Life Care

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Previous Sound of the Week

15/01/16 – Truly Madly Deeply

22/01/16 – To Absent Friends…

29/01/16 – Desert Island Discs – Mary Portas