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Patient representative? No need to be patient, these are navigation experts!

It happens that I am a patient today: I got up from sitting for hours on an office chair and immediately had excruciating pain down my left leg. I was barely able to stay upright. I managed to get down the stairs and pulled my leg with both hands over the cross bar of the bike. Once I was rolling the burning started to ease. When I limped home in the evening my wife, who is a physiotherapist examined me and showed me exercises to stretch some ligaments around the hip joint and strengthen core stability. I am starting to think:

The fact that I am a patient today does not make me a patient representative. So what would be the standard? If I want to be a representative who is the right person for me to ask?

Let me start by saying ‘thank you’ to a number of patient representatives who have heavily influenced my thinking over the last years:

Stuart was our local representative in Bangor on several patient safety projects. Years prior he suffered critical illness and was unable to return to work after. But he always told the story from his time in the Intensive Care Unit when a nurse looked at his dressing, tapping a pen against her teeth and then lifted the dressing with the same pen. That was a key event for him and he got involved: He got involved locally, regionally, nationally and internationally as part of ‘Patients for Patient Safety’. He went to study psychology. He became an expert. And a vocal advocate for better care. He was the first person to tell me about patient held records. After a time caring for his wife who suffered with dementia he returned to become the representative who shaped our Future Hospital project CARTREF. An inspiration!

Carol Caporn was the patient representative from the Royal College of Physicians Patient and Carer network who joined us to support CARTREF. She worked as a social worker and has been a trustee of a national charity prior to getting involved at the RCP and supporting our often flailing CARTREF project through three really difficult years. She was exceptionally experienced, knowledgeable, inquisitive, professional and encouraging and probably the only reason that we did not give up during challenging reorganisation of our services. She recommended much of the reading that I did to prepare my successful application to the Improvement Science Fellowship at the Health Foundation. Carol believes passionately in patient leadership: ‘patient leaders are people who invest their time and resources to influence decision making at a strategic level that improves care experience. They are people with valuable health and care related expertise, with strong empathy created by their own experiences, resources, and ideas to make an active contribution to improving the experience of care and the health and well bring if others.’ she quoted to me.  She prefers a democratic approach where those who use a service should be involved in running it.

Dafydd Thomas is another patient representative from Bangor. After being very very ill he had the feeling he wanted to give something back and got involved (initially under Stuarts guidance). Given that he had worked at Wylfa in the control room of the local Nuclear Power station his knowledge about safety and human factors was a massive boost. He is an expert advisor for work on Crisis Checklists that we are currently testing in simlabs in three countries in Europe. He also became a co-applicant on our successful iGrant application with Tenovus to design ‘KeepYouSafe’. ‘KeepYouSafe’ is a smartphone application with an  interactive checklist for patients and their families to anticipate side-effects after chemo and radio-therapy. Dafydd’s brings experience and professional knowledge to clinical safety.

At the Health Foundation I met Josephine Ocloo. Josephine is one of the more senior Improvement Science Fellows on the program of The Health Foundation with a national and international profile. After a career as a Senior Lecturer in Social Work with wide academic reach she lost her daughter in horrible circumstances: The health service had not functioned and refused to admit harm. She used her expertise as a diversity activist to become an activist for patients who suffer harm in health care. And in particular for those who’s voice is often ignored or suppressed. She coined the term ‘harm patient’. Josephine has made me think about who is  part of patient representation and how engineering of systems needs to response to this challenge.

Stuart, Carol, Dafydd and Josephine are amongst the people who have most shaped the way I think about safety in healthcare today. But I am wondering whether the term ‘Patient Representative ‘does their diverse roles justice:

Firstly they are not representative for the quiet majority of health service customers. They add specific knowledge,  energy, focus and urgency to a debate that is too often dominated by the ‘realpolitik’ of policy and apparent necessity. They are experts in their own right. They are the much needed innovators and disruptors.  Their input leads to measurable improvement and added value, while being nearly always unpaid.

Secondly they are not representative in the sense that they are rarely elected. While this is not the case for Stuart, Carol, Dafydd and Josephine it seems that sometimes patient representatives are selected to fit in, not to disrupt. They come from a selected segment of society rather than being indicative of all society’s needs.

Thirdly they are not just there to make up the numbers: a representative from each department to allow for the often paralysed committees that the NHS is famous for. They are the essential ingredient to give legitimacy to everybody else who work in health. And if ‘patient’ means to be ‘able to accept or tolerate delays, problems, or suffering without becoming annoyed or anxious’ then we might not want them there in the first place.

Patient representative seems to therefore be an awkward term. Are there alternatives?

I feel equally uncomfortable to use the term ‘customers’ or ‘clients’ representation. This might fit if we would be a fee-for-service system. And in that case feedback would be much easier to gauge through commercial success or failure.

Is ‘champion’ a better term? A champion is a winner! That would be a good start. And I like ‘expert by experience’. This would be a qualification: you have to have the experience!

Many ‘representatives’ are ‘advocates’ and ‘campaigners’. This ‘advocacy’ seems to be at the heart of where energy and expertise come from. An advocate is ‘a person who puts a case on someone else’s behalf’, some like a patient who is too poorly or frail to express their needs and high-light short comings. Or a patient who has no practice in articulating the important observations that they make to those who work in the health service. That seems for me to capture much better the heart of my learning.

How about critical friend? When I am meeting Patient Representatives they are usually not my patients. Or might not undergo active treatment at the time. But most of them are clearly experts in reviewing the health service, and in particular corners that are forgotten, overlooked or ignored. They are critical friends that are outside the hierarchical system of the Health Service. They are willing to speak truth and support struggling services. And to stick with the Health Service as advisors rather than claimants. Good friends to have indeed.

Patient centric services made headlines: Patient centric might not be what we are looking for, it might be collaborative. From representation we are moving to patient focus and co-production.

If we are looking for patients joining us through the shallows and swellies of the tidal health service then it seems that the patient is finally in the boat, they are reading the map and the question is when they will be finally allowed to take over the steering wheel and allowed to navigate.

One question remains for me: If services are being patient centric and supported by patient ‘experts by experience’:

How would I know that the patient is finally in charge? Is it time to translate a TEF for ‘Teaching-Excellence-Framework’ to a PEF for ‘Patient-centred Excellence Framework’ and what would it entail?

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