The Irish Medical Times - A Seat at the Table: Patient Partnership with the HSE
Bernard Gloster welcomed us all to the event. I had never seen him speak in person before and was struck by his humility. He emphasized the need to move away from the paternalistic HSE of old and move towards a culture that listens and reflects, in his words “Hear it, and bring it back”.
He was joined on stage by patients and HSE hobnobs who dived into the topic of the evolving partnership journey. They discussed how we need to support patients more. An interesting example mentioned was the use of language, instead of the word ‘complaint’, more progress might be made if we used the word ‘feedback’. A simple suggestion, yet it has the potential to be a groundbreaking disruptor. I’ve often wanted to give constructive feedback but shied away because the ‘Complaints Dept’ felt like too big of a step. I’ve also wanted to give good feedback but didn’t know where to go with it. If a hospital had a Feedback Dept I’d be leaving comments left, right and centre.
Pauline O’Shea, a patient and advocate from the Irish Heart Foundation, asked how we move patients and their feedback beyond the peripheral and into the heart of the organisation. She joked they could have a ‘Bring a patient to work’ day. It got a big laugh, but in all honesty I would love to follow some of my doctors around all day. I’d be whispering in their ear “Be nice to that patient now, or I’ll burst ya!”. (For the record, my doctors are a nice bunch, no bursting required).
Joe Ryan, HSE National Director for Partnership, Risk and Culture, answered Pauline's question on how to bring a patient along. He said it centred around the need for a cultural shift, where every worker in the HSE is thinking how does their job impact the patient. His response reminded me of the story of President John F Kennedy’s visit to NASA in 1962. On his tour of the facility he noticed a janitor carrying a broom and asked him what he did, the man replied “I’m helping put a man on the moon, Mr President.” HSE staff need to understand the importance of their contribution. They are a part of something bigger than their broom!
A powerful point was made from a patient who said she was approaching the end of her life, she had been advocating for years and had yet to see issues solved. We are all getting older and there has not been enough resolution. One of the new REOs (Regional Executive Officers) felt the new regional approach (which feels somewhat like a rebooted version of the old district health boards) will give a chance to have some local autonomy and hopefully will build better foundations with patients where progress can happen faster.
In a change of pace, a stylish duo of Patient Partner and a REO took to the stage to talk us through a presentation on the restructuring of the health regions. Joan Johnston, General Manager of COPD Support Ireland, spoke confidently of co-designing the future with patient councils, a partnering office, partner leads, and seats for patients on the strategy and planning teams.
Then a hush fell around the room as hundreds of in-person and online guests focused on the stage. The time had come, my panel made our way to the hot seats, the digital discussion was about to begin.
Prof Richard Greene, HSE Chief Clinical Information Officer, set the tone with a quote from Socrates "The secret of change is to focus all of your energy not on fighting the old, but on building the new"
Damien McCallion, HSE Chief Technology and Transformation Officer, reminded everyone the focus shouldn’t be on the technology but on how we do things and this needs to be reviewed collectively. He emphasized we need data standards, infrastructure and put the patient at the heart of the design.
Muiris O’Connor from the Department of Health, who self described as Paddington Bear (I thought he had more of a Sherlock Holmes vibe) talked about the importance of the European Health Data regulations and ensuring clinicians have access to complete health data.
Derick Mitchell, CEO of IPPOSI, made the point about improving the service and not getting lost in the technology. He was very keen for his GP to turn the computer monitor around. I think his doc might be hiding the fact they are killing it on Minesweeper.
I talked about my experience as a partner on the HSE Telehealth initiative, where patients were onboarded early, a step towards success. Once underway the Telehealth committee opened up a gauntlet of opportunities for the patient to collaborate from devising strategy to testing equipment.
The challenges I encountered as a patient partner with the HSE included staying engaged throughout a long project (we’re talking years), my simple solution is patient remuneration - we deserve it. There is a vital need to increase the number of patient partners by actively recruiting people onto patient panels.
The way forward for successful partnerships will be finding a way to connect. I bonded with my HSE committee members over our shared frustrations with the current system and a desire to improve.
I suggested we acknowledge the fear factor around digital care, “Sit in the fear,” I told the room, “Get to know who is afraid and why” which, by the way, is also my strategy for games of Scrabble.
The conference moved on to talk about culture and communication. We need to move from paternalism to partnership, from telling and doing to listening and relating. Look at a patient when you talk to them, ask open questions, leave time to answer questions they have on care plans, and most importantly, respond with empathy. Communicating with compassion was the overriding message.
There was a terrific question from an audience member asking how are the HSE measuring the empathy the staff show, and how do they support and encourage the empathy they do see? Bazinga! What a question.
A slightly stumped HSE said they have the Care Experience survey which shows if certain initiatives are doing well, if they are, they will be encouraged.
In something slightly resembling a school play, 6 patients sat on stage with their 6 REO counterparts. At one point I thought the patients might shove their arms under the oxters of their REOs and create a human puppet show, with Punch and Judy squeals of “That’s the way to do it!”.
Anne Lawlor, Chair of HSE National Patient Forum, made the point that whatever region you are in the care should be consistent. We rely on doctors for their medical expertise, they should rely on us for our lived experience expertise.
To wrap up a comprehensive day, there was a high level panel discussion. Fergus Finlay, former CEO of Bernardos, made the valid point that people don’t always want to co-design their treatment, they just want respect. Use HSE leadership to change the culture to promote more respect.
Dr Suzanne Crowe, President of the Irish Medical Council, felt we can educate young doctors about partnership but it will be harder to change the older generation of doctors who may be held back by fear. If we enable older doctors to role model patient partnership then others of that generation may follow.
One of my favourite and final speakers was Rebecca O’Riordan from Families Unite for Services and Support (FUSS). She stressed the importance of separating out the parent’s experience of navigating the system from the child's experience of undergoing the actual treatment. She highlighted the need to think of non neurotypical forms of communication for patients.
One of her go-to phrases which delighted me to no end was the simple “Out ye pop!”. For example, ‘If you can’t look after my child? Out ye pop!’, ‘If you’re not up to the job - Out ye pop!’ I would love for that to become an accepted patient response in difficult situations, a quick point to the door “Ok. Out ye pop!”.
As the lights dimmed, and people ran for trains and buses, a cancer patient advocate approached Pauline O’Shea while I chatted to her in the hall. He thanked her for speaking up on the panel about how the patients here today are the privileged ones, what about the patients that were not on the HSE radar. Pauline suggested the HSE create an outreach programme to catch their concerns. It was both heartbreaking and encouraging to listen to the man speak to Pauline about all the efforts he has made to be heard on behalf of his wife who has incurable cancer. It flagged the divide around the ease of access to HSE people/platforms for the connected Patient Partners. But how are we capturing the concerns of the boots-on-the-ground patient that is not ‘well known’ to the HSE?
They say true advocates listen more than they talk. I think the event may have benefited from a booth where patients could have met representatives from the HSE Patient Panel, or even a sign-up sheet to join the panel, or register interest. Perhaps a comment box, a Q&A segment, at a very minimum a contact email address could have been prominently displayed or made available to those patients in attendance who wanted to connect with the HSE.
There was a lot of talk about showing compassion to patients. One thing that wasn’t mentioned was the impact to doctors if they are to demonstrate more empathy to patients. Perhaps some doctors appear detached in order to survive the rollercoaster of emotions that may come with seeing people struggling to live. If the HSE is increasing the compassion shown to patients, they should increase the psychological safety provided for doctors.
As the fascinating day came to an end, I never got my crown, but I did leave feeling like a new person. As a patient, it's common to feel frustrated and on your own, if you’re lucky you’ll find solace in another patient who can share the experience, but to have the national healthcare system look you in the eye and ask you ‘How can I help?’ - that’s a whole different kind of friendship.
Here’s to next year!
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