Learning Through Listening

By Catherine Stannard, Programme Support Officer at the UK Renal Registry

When I began my new role as Programme Support Officer for Transforming Participation in CKD at the end of February 2017, I had very little knowledge, or experience of Chronic Kidney Disease.  From the offset, my priority was to try and understand what living with Chronic Kidney Disease meant to people – to those living with the condition, to clinicians and to the general public.  This would mean I would be able to relate to those involved in the programme and understand the difference the work we were doing could make.  I set about reading the personal stories, blogs and case studies on the website, going back over past programme reports and event write-ups as well as meeting up with other UK Renal Registry staff and patients involved in the programme through co-production.  There was a huge amount of information to take in, and I learnt a lot in those first few weeks but I knew something was missing.  I had never actually visited the place where all the work that goes on at the registry and through the Think Kidneys programmes really makes a difference – where research and quality improvement projects are put into action on the ground, and where the people they truly affect spend so much time – a renal unit.

When it was suggested then, that I support Rachel Gair, Person Centred Care Facilitator to the TP-CKD Programme, to run workshops with staff at renal units, I jumped at the opportunity.  This would be a chance to see in reality what the hundreds of surveys that are scanned in at the office, reports that are written and meetings that are arranged, really mean, to meet some patients and hear their stories.

So a beautiful sunny day in May saw me on my way to Heeley Satellite Unit – an off-shoot of the Northern General Hospital in Sheffield – to visit my very first Dialysis Clinic. Immediately we were met by the warm, beaming Cheryl Matthews, the lead nurse at the unit. It’s not surprising, with her at the helm, that the atmosphere is so familial.  Staff and patients were sharing cake together to celebrate a haemodialysis patient’s last visit to the satellite before beginning home therapy.

You either love or hate this job” Cheryl explained, “patients become like family to the staff here – they spend so much time together.

Cherly’s enthusiasm and her pride in one young man’s journey was relayed to us before we even got through the foyer.  Cheryl told us the transformation this patient had gone through – from an anxious, nervous and overwhelmed new dialysis patient, to a confident, engaged young man who was able to self-manage many aspects of his own care, and was looking forward to the renewed independence that home therapy would give him.  I had not even had a chance to get my notebook out, but this represented a clear example of person centred care.  At the beginning of this man’s journey, staff at Heeley had met him on his terms – they had challenged but not pushed him, and celebrated with him on small successes he achieved. They had walked beside him through his journey of chronic kidney disease.

As Rachel led a workshop on person centred care and the TP-CKD Programme, one of the support workers piped up “it’s about ownership isn’t it?”  This understanding revealed how the unit staff understood the ethos of person centred care.  I am sure it is no coincidence that this unit had done so well in phase 1 of the TP-CKD Programme, managing to return surveys on almost all of their in-centre dialysis patient population.

Feeding back to these staff members on their Your Health Survey results that they had all worked so hard to collect, I felt a sense of partnership.  With good leadership, an engaged staff base and investment from the programmes team in sharing knowledge and learning with trusts, this data can make a difference.

Over at the main hospital site our visit continued with a meeting with Jill Webster, Lead Nurse at the Peter Moorhead Dialysis Unit.  Here, staff were stretched due to unforeseen sickness so were unable to join in a workshop, however Jill welcomed us and was once again full of stories, experiences and anecdotal evidence of what person centred care meant to her.   She had a passion for home therapy and in working together with patients to come through specific challenges unique to them.  ‘Patients’ did not all come in one package for Jill.

There were challenges too of implementing interventions on a busy ward – time constraints, communication skills – both of patients and staff – even in the layout of the patient bays. I soon realised that it is only by learning about and recognising these challenges, and working together with staff and patients to overcome them that changes in behaviours and conversations can happen.

Our day was rounded off with a meeting with Veena Reddy, Hilary Lintern and Debbie Douglas – all of whom have been champions of the TP-CKD programme from the beginning of the partnership.  We fed-back results so far from the programme – Patient Activation Levels, Patient Outcome Measures and Patient Reported Experience – talked about successes, challenges and the next steps for Sheffield towards Transforming Participation in CKD.

Being able to see the Northern General Renal Department from these three perspectives enabled me to see the site as a whole, and recognise its complexity.  Just as it is not a ‘one size fits all’ solution for patients, nor is it for units.   Each site, each team, each patient and each level of care has unique needs which require different approaches.

Reflecting on the day, I realised the wealth of information there is stored up in the front line staff and how much knowledge they have to share.  What may be just another ‘day in the office’ for staff members like Jill or Cheryl, could be an important piece of learning for TP-CKD, and for the wider renal community.  These are the people who are seeing the day to day victories, and challenges in patients’ lives and in healthcare environments.  They really know what works and what doesn’t, and we need to hear their stories.

I enjoyed every moment of my first visit to a renal unit – from learning how a dialysis machine works (medical engineering at its most baffling!) to meeting patients, staff and putting faces to the names of all those people I have emailed over the last few months.  I’ll certainly use the day to inform my work going forward.

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