Sue blogs on power and participation in this Co-production Week Scotland 2017 themed blog.
My late mum would want me to speak of the skilled, kind and compassionate care given to her by the majority of NHS Scotland hospital staff. Mum also asked me to continue to tell her story about our experiences of the times where regrettably this was not the case, in the hope that it could help even just one person in the future.
The theme of co-production week this year is ‘Power’.
As a daughter and carer, I came to understand the true imbalance of power that can exist between a vulnerable person and their family members, and those powerful staff who sadly chose to make all the key decisions without us and were indifferent to mum’s voice.
The Power(less) of Attorney in our case had as much power as a flat battery! Some doctors ignored the Power of Attorney and had ‘consultations’ without even respecting mum’s wish i.e.legal right to have me present. Even more concerning was the fact that such pivotal discussions would take place while Mum was not supported to actually wear the hearing aids that she so relied on, and they remained by her bed.
Despite the Equality Act (2010) and the Charter of Patient’s Rights, our experience was that no adjustments were made, reasonable or otherwise, to maximise mum’s communication and participation. There are serious consent issues when a person cannot hear what a medical professional is saying yet is being asked to consent to information which they either mishear or cannot hear.
Due to some staff who did not operate the most basic human connection of treating mum like a person at the very centre of her care, it came to the point where I simply wrote “Hello my name is . . .” – the campaign launched by the late Dr Kate Granger – on mum’s ‘What Matters to Me’ board. I wanted to ensure that mum was treated as a human being, treated by staff as they themselves would expect to be treated. Not be ignored or talked about over her head like a ‘Resusci Anne’ in a bed.
As Dr Jason Leitch said in his ‘A New Vital Sign’ TEDx, “What matters to you?” is a simple and powerful question and how I wish that he had been there to ask mum that question last Christmas.
How I wish that medical staff, rather than excluding us, had taken the trouble to ask this question. If they had, they would have found out that what mattered to mum, diagnosed with incurable cancer, was simply getting home to her wonderful Social Work Homecare team who cared for my late dad, too – “Anne’s Team” as we called them. Rather, mum lost months of home comfort for no reason whatsoever, with mum begging me to take her home. “They’re not doing anything” she said. Kind though they were, mum was right as even a liver biopsy was deemed too risky.
At home, mum, her much loved cat and I could have cups of tea, share music concerts on a TV that she could actually see and hear (thanks to the appropriate Sensory Impairment equipment). She could travel the TV world with her daughter, see her flowers and personal pictures, play Smooth radio . . . stranded in hospital, mum missed her last Christmas.
I recently shared our experience with the Health and Sport Committee, as part of their call for views on NHS Clinical Governance, and was later invited to meet with members of the Committee in the Scottish Parliament earlier this month.
I heard very moving stories that are not mine to tell, but it’s fair to say relate to things which should never have happened in our NHS in the 21st Century. We were treated with dignity and respect and the MSPs asked me very pertinent questions, having obviously read the submission that I’d sent.
To me, this positive and vital step by the Health and Sport Committee is a major step in ensuring that co-production in care is genuinely going to happen in the future. This will also benefit those NHS Scotland staff who may already have a dual role of not solely working for NHS Scotland but also being carers. “They” will become “us”.
I am of the view that true co-production partnership will only genuinely happen as Christie wished when the legislation of our Parliament is not only transcribed in paper but in practice.
For person centred care to be a reality, it is vital that people accessing services and their carers are fully engaged in the decisions that affect them. I also feel that greater support and mediation measures need to be in place to quickly act on ‘patient’ concerns and feedback before they develop in to ‘complaints’ per se. For example, my experience could have been markedly different if external staff (for example Advocacy Services, Patient Advice and Support Service Staff (PASS), or Carers groups) had been on site to independently and timeously mediate and seek immediate resolution at the bedside where it was possible. Complaints don’t even talk with the person who is the patient – contrary to the alleged Patient Rights “participation”.
After all, while no one can argue with the aims and aspirations of legislation such as the Charter of Patient’s Rights or indeed the Carers (Scotland) Act 2016, the truth was that for mum they were just inactive words on Parliamentary paper.
Without the right provision in place to ensure that they were enacted in clinical practice , according to General Medical Council Guidelines, they remained on paper.
Co-production Week Scotland takes place from 27 November to 1 December. For more information, visit www.coproductionscotland.org.uk/coproweekscot (this link will take you away from our website).