Spring 2021 newsletter

Happy Easter, Patient and Carer Group! Following on from the winter newsletter, a time to reflect and to support each other as we move into a new phase, and gradually leave lockdown, and celebrate spring. The resilience that enables Patients and Carers to ‘keep going’, has certainly been tested over the past year. This has been noted and appreciated by staff and students, as you will see in the spring newsletter articles. David Roberts has moved on from being the ‘main man’ in the production of the newsletter. The editorial role has been taken on by myself. David has taken on an ‘overarching role’. However, the hope is that I will be joined by one of our members in co-production. I do feel blessed to have this opportunity and know it is a privilege, not a given. David will continue to offer support, counsel and contributions and remain a critical friend. On behalf of the Patient and Carer group, many thanks to David who after all was instrumental in getting the very first edition out, on time too. The aim of the newsletter is to inform, support, and encourage members to talk and listen. Your views and your news are central to the document. From my perspective the most interesting and courageous people I know are within the Patient and Carer group. As a group we all have something valuable to offer the students (their words) and the newsletter is a way of bringing our community together, either by offering contributions or showing an interest in each other.

Rachelle Maxwell

The first article begins with “the beginning”

Professor Liz Anderson has provided a brief history of how Patient and Carer involvement began. The initiative commenced formally 1996, we have provenance!

Fast forward, the second contribution is from Amber Bennett-Weston

A PhD student, currently in the early stages of researching Patient and Carer involvement in medical education ‘today’. I have offered our support to Amber, and we can follow her progress in subsequent newsletters.

A new recruit Jig Vaidya

Some members may have already met Jig Vaidya, a new recruit. Jig is a businessman, a radio researcher, a wheelchair basketball coach, and a Carer for his Mum. Also, a budding author. In Jigs article he describes some of his life experiences and reflects on his work with Patients Know Best (PKB) and the rewards of working with our students.

Dr Asha Kanwal – notes from the frontline

The final contribution has been provided by Dr Asha Kanwal, Foundation Year 1 student. As you will see Asha’s article ends with ‘thank you for being part of my journey’ praise indeed and humbling, from a young doctor at the front line who values the Patient and Carers input.

Starting the Patient and Carer Group: History

Professor Liz Anderson

Patients/service users and carers have always been involved in medical education but articulated formal, participatory engagement, has taken a while. Our journey here at Leicester Medical School, began back in 1996 when we designed a new course for medical students to learn about multidisciplinary working on St Matthews Estate Leicester, entitled ‘Health in the Community’. For the first time local people became representatives on an education steering group. This patient-involvement led to further funded studies in which we received grants to pay service users and carers to help to design new teaching. In 1998, RH Yvette Cooper, praised our ‘Learning from Lives’ course in a Parliamentary session, for helping medical students learn about disability inequality.

Liz Carr (silent witness disabled actor) was one of our early teachers on this course which ran until 2008. The Listening Workshop, in 2005, was a funded project which resulted in action-learning to design teaching in which patients/carers have been paid to participate and lead the teaching session. In 2010, we set up an early developmental group to write an agreement for patient and carer involvement as a partnership approach, to set out how we wished to work together (academics clinicians, patients, and carers) to benefit student learning. The final Framework document and group identity was launched in 2016. This formal agreement has brought about a structure and purpose for involvement and the development of a supported community with an administrator. Together we bring patient stories and experiences to enhance our curricula while we hope a sense of belonging as members become a valued community within the College of Life Sciences, University of Leicester.

Involvement of Patient and Carers in Medical Education

Amber Bennett-Weston

Despite being central to the education of medical students, for so long patient and carer involvement in medical education was passive. Approached at the hospital bedside and used to provide illustrations of certain illnesses for students, their involvement was a far cry from what it is today. Since the introduction of a partnership agenda at the start of the twenty-first century in health and social care, with the ‘New NHS’, patients and carers have begun to take on active roles in the education of health and social care students. The goal of those people bringing patients and carers into the educational environment should be partnership working, so that students are able to truly benefit from the authenticity and meaning that comes from lived experience. Some areas of health and social care education, particularly social work, mental health, and nursing, have prioritised working in partnership with patients and carers, and are leading the way in teaching us how to do this in ways that are meaningful, respectful, and reflective of true, equal partnerships.

Medical education on the other hand, is lagging behind. Many universities are bringing patients and carers into medical schools so that students can learn from their experiences, however, few attempts have been made at achieving meaningful partnerships between patients and carers and faculty in medicine, and there is little guidance on what this means for patients and carers, and how to ‘do’ involvement well. The hope is that through my PhD research, I will be able to progress our understanding of what it means to involve patients and carers in medical education specifically, and how we can do this better.

The views from a ‘new recruit’

Jig Vaidya

I was ‘encouraged’ by Rachelle to join the Patient and Carer group. My reluctant ‘yes ‘was swiftly followed up with a call from David Roberts. The rest is history! The opportunity to help make a difference to the medical education of future Doctors is one that I relish.

As an Asian professional, also a wheelchair user from the age of 3 years, due to polio, I want to educate the future generation as to the requirements of people like me, who want to contribute to society, and improve access for this to happen. I also care for my Mother, Covid brought challenges as Mum has been shielding and I have needed to work from home, mainly by Zoom. I have worked for the BBC for ten years, part time. Several years ago, I gained a consultancy with MAXIMUS, formerly REMPLOY. My role is to support the company’s goals around diversity and disability issues. Through this experience I discovered the many ‘access’ challenges faced by individuals trying to just lead their lives. Because of this and along with two colleagues who are also paraplegic, we set up our own company whereby we carry out access audits. A recent client has involved Heathrow airport and I will report more on this as it develops.

People often ask me what it is like using a wheelchair. Well, I think life is great. So, what, I am in a wheelchair, I still do normal things like going to the gym every day, yoga once a week and player coach wheelchair basketball. I also socialise with friends and family. One good thing about being a wheelchair user is the opportunity to queue jump. Particularly at the airport and the pub. I am particularly popular when the next round of drinks is required, and I’m pushed up to the bar! The not so good side of being paraplegic is some people’s attitude. Thinking I am in a chair, I must be useless. I have also been affected when applying for jobs and in the past felt overlooked. Well, my attitude is I am in a chair ‘get over it’.

To work with my students on Patients know Best (PKB) has been one of my most rewarding experiences. The students contact me regularly and always have plenty of questions to ask. It is only by this sharing of experiences that we all improve, and I feel privileged to be a small part of developments. As I said, my goal is to improve diversity and provision for people with disabilities, as this will assist everyone.

My Journey - COVID 19 challenges

Dr Asha Kanwal

My journey through the University of Leicester Medical School was an incredible delight, as I was truly set up for the exhilarating journey of being a doctor during these unprecedented times. As a member of the 2020 ‘COVID’ graduate cohort, I had to adapt to the new wave of Medicine that was coming into play. Being introduced to patient communication exceedingly early in the course through patient participation groups and an online programme, Patient Knows Best (PKB), I was able to continuously re-enforce and develop my communication skills. What made the University of Leicester unique was that communication skills were being developed on different platforms including face-to-face and non-facing communication via the PKB. This has essentially prepared me for the potentially new and increasingly common non-facing patient interactions COVID-19 has forced upon us.

In the current climate with zero family visiting times, as healthcare professionals, we are the faces that patient’s see daily and therefore their main social contact. To reduce their anxiety, loneliness and ultimately ease their journey through their hospital admissions, I see it as part of my role to communicate with both themselves and keep their family members updated regularly. The ability to not only empathise but explain medical conditions in simple terms has come from being involved in patient participation groups throughout my journey at medical school. Acknowledging the stories of patients with long term conditions and building professional relationships with members of the patient participation groups at UoL, I am now able to better understand, explain and reassure my patients within my current role as a doctor.

I believe the patient groups are an asset to the medical school and play a crucial part in the training programme. I want to give credit to the wonderful patient volunteers at the University of Leicester who have not only allowed me to understand the impact medical conditions have on patient lives, but also allowed me to be the doctor I am today. I deem myself lucky to have met wise people with wonderful personalities through these patient groups, who have truly bought a smile to my face on several occasions via mere banter but also through education.

Thank you for being a part of my journey.
Asha Kanwal
Foundation Year 1 Doctor

You may like to investigate the following

Many thanks to our contributors. Looking towards the summer addition all contributions welcome. Members may also like to respond to the following:

  • Your experiences of working and caring during the pandemic, the challenges are enormous, and little understood in my opinion.
  • Your experiences of health care during Covid 19, any delays or cancellations and shifts to remote appointments.
  • Your experiences of adjusting to remote learning.

Happy Easter to you all.
Rachelle