Abba, Dementia and Empathy

Cristina and I have given a few presentations about GMKIN in the past few months but they felt like rehearsals for the main event, the British Renal Society Annual Conference which this year was held at Leeds University. Our journey to Leeds didn’t bode well for the rest of the conference: motorway traffic jams, a gridlocked Leeds city centre and an absence of parking at the University mixed with stifling heat from the hottest week in the UK this year meant neither of us were feeling at our best when we arrived. Our late arrival resulted in me missing my ‘must see’ presentation on Autosomal Dominant Polycystic Kidney Disease (ADPKD). Luckily, I managed to grab a quick word with two of the speakers after the talk, Dr Grahame Wood of Salford Royal and Tess Harris of the PKD Charity and they gave me a brief overview of the presentation. Sadly the answer to the $64,000 question, “Who will be prescribed Tolvaptan (Jinarc)?” remains unclear.

The first day of the conference ended with Cristina and I emailing copies of our presentation back and forth from our respective rooms as we tried to ensure our talk the following day didn’t overrun the allotted 10 minutes.

The stifling heat that greeted everyone the following morning ensured we had another tiring day ahead as we dashed from building to building up and down the campus in a rather futile attempt to arrive on time for the next presentation. It was good however to meet some familiar faces as we toured the exhibition halls. There were so many interesting presentations in the programme it was difficult to know which to attend next but one of my favourites was Julie Gorton’s talk on the very successful Young Adults Clinic at Salford Royal. You really got the sense that this was important work and Julie’s commitment, passion and enthusiasm is clearly a major factor in the project’s success.

Cristina and I returned to the exhibition hall for lunch only to discover that as well as giving our talk during the afternoon session we also had to give a short presentation for the poster moderation judges immediately after lunch. The rush of adrenaline did little to calm our nerves. We presented to Dr Roger Greenwood, a former chair of the BRS, and he quickly put us at ease by his obvious interest in Cristina’s project and pertinent, insightful questions about GMKIN so we were both a little happier going into the afternoon session. The talks in each session at the conference broadly follow a similar theme and are selected from submissions of anonymous abstracts so it came as quite a surprise when we realised that 5 of the 7 speakers in our session were connected to Salford Royal. We listened to talks on the development of the ASSIST CKD project as well as others on Quality Improvement from Dr Lesley Lappin and Dr Sajeda Yousuf. Our talk flew by and although I lost my thread it was well received. Following a quick drink we returned to the auditorium to listen to Fiona Loud of the BKPA give an update on dialysis commissioning, which while not all good news at least gave the hope that the approach to the switch to CCG commissioning might this time be a little more considered and delivered as a result of collaboration rather than diktat.

Fiona Loud of the BKPA talking about dialysis commissioning.

The evening ended with the Gala Dinner, an opportunity to network and let your hair down. It was a lovely evening, good food, great company rounded off with a now traditional sing song with an Abba tribute band. Everyone was having such a great time I didn’t subject them to my tone-deaf rendition of “Dancing Queen”.

The second day ended with a now traditional sing-a-long to an Abba tribute band.

On the final day of the conference we attended to rather different presentations, the first on dementia awareness and the second on communicating empathy. Elizabeth Collier and Natalie Yates-Bolton gave an informative, interactive and enlightening talk on dementia awareness and explained some of the understanding of how dementia affects different aspects of memory. They also spoke of their work with people living with dementia and how those people were both involved with and influenced their work. I have some experience of some of the issues raised as my step mother-in-law has vascular dementia and Alzheimer’s disease. Elizabeth and Natalie clearly share a passion for their work and work well together. We got the chance to talk about how dementia awareness can improve the environment in the unit for those people with dementia who also have to dialyse. Simple changes to colour schemes and reductions in noise levels can make the experience less stressful and confusing for the patient.

The session on empathy revolved around two role play scenarios designed to demonstrate to medical professionals that there are opportunities to empathise with patients, how that can diffuse some of the stress associated with difficult conversations with patients which can also lead to better patient engagement and outcomes. The first scenario featured a young mother whose five year old child had been diagnosed with type one diabetes in conversation with a harassed consultant. The second concerned a young woman newly diagnosed with kidney disease, fearing her life was over attending her first hospital appointment with a nephrologist registrar. The situations were brought to life by the two actors during the role play exercises and I left with a better understanding of the difficulties both patient and doctor can experience in stressful conversations.

The third and final day of the conference ended on two high points. Cristina’s poster was judged Best in Group for the second year in succession which demonstrates to me at least that there is a role for social media in improving patient efficacy and self-management. In winning her second award Cristina has succeeded in demonstrating that to medical professionals too. So the second high point was meeting Anne Cooper in Leeds city centre on our way home. Anne is one of my social media heroes and in her own words, a super-connector. She was every bit as kind and generous with her time and knowledge as I had expected. We could have talked for hours and I hope we get the chance to chat again.

After a difficult start to the conference both Cristina and I enjoyed every aspect of the second and third days in Leeds. Thanks go to the British Renal Society, the inestimable Professor Paula Ormandy and the wonderful Anne Cooper or @AnnieCoops to her Twitter friends.

Profile photo of Rob Finnigan

I’m an ADPKD patient who was lucky enough to have a transplant in 2003 after only eleven months of dialysis. I'm the north-west Patient Advocacy & Support Officer for the BKPA and my interests, other than my role within GMKIN, include sport, music and politics . Follow me on Twitter: @finnigr

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