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Dear Patient and Carers,

It’s lovely to say ‘hello’ .

Spring is on the way and new life is bursting and blooming all around.

Currently, the world can appear to have spun out of control, things can appear uncertain and unknown. However, as a Patient and Carer Group ( PCG) we cherish the privilege of working in partnership with the University of Leicester Medical School; to provide learning opportunities for our students. The PCG is considered an important and much appreciated component to the curriculum.

In this newsletter we explore the vital role of Professor Jayne Marshall. Professor Marshall is Foundation Professor of Midwifery and describes how the Professional Statutory Regulatory Body - the Nursing and Midwifery Council (NMC) regards the patient and carer voice as being fundamental to curriculum development. Professor Marshall explains how she has acquired the title of ‘Dragon Tamer’, more recently:

• Cathy Harrell recounts her long involvement with the PCG, and the many developments that have taken place.

• Dr Julian Barwell’s poignant poetry is featured; more about Dr Barwell in the next issue.

• Clare Carr introduces a creative idea and suggests we ‘get involved’.

• Anthony Locke has provided examples of artwork produced during lockdown

• Amber Bennet Westin, who has made the voice of patients and carers her passion, provides an update on her PHD research.

Finally, love and vibes to our colleague who is facing considerable health challenges.

Many thanks to colleagues for contributions.

Take care

Rachelle and the Marketing Team

The role of Prof Jayne Marshall

Jayne Marshall is the Foundation Professor of Midwifery at the University of Leicester and the Lead Midwife for Education- a conduit role with the Nursing and Midwifery Council and university. Jayne commenced her role in July 2017 that involves establishing a critical mass of midwifery talent and pioneering an innovative 4-year undergraduate pre-registration Master in Science Midwifery, with Leadership programme for aspiring leaders of the midwifery profession. This programme has been developed in partnership with University Hospitals of Leicester NHS Trust. Currently Jayne is Deputy Head of the School of Allied Health Professions and the School’s Director of Education.

Jayne trained as a nurse at Guys Hospital, London and undertook midwifery training at Kings College Hospital London, moving into midwifery education early in her career. Her first role in education was at the University of Nottingham where she held a variety of teaching and leadership roles before leaving to take up appointment as the Head of the School of Midwifery and Lead Midwife for Education at Kingston University and St Georges University of London. Jayne was then promoted to Associate Dean for Practice Education and Workforce Development with responsibility over seven health and social care professions. Subsequently Jayne became the first Professor of Midwifery at Kingston and St Georges.

Whilst at the University of Nottingham, in 2012, Jayne was recognised for her understanding of leadership both in education and clinical settings. She was a recipient of a Lord Dearing Award in recognition of outstanding achievement in enhancing the student learning experience and in 2013 received the Royal College of Midwives Johnsons Baby Award for Excellence in Midwifery Education. Jayne’s PhD research explored intrapartum informed consent and subsequently her research interests have focussed on pedagogical research in midwifery, supervising students undertaking higher degrees and examining doctoral studies. As an expert in the field of midwifery education, Jayne is often approached for her professional advice in shaping midwifery education and practice and is currently a member of Health Education England’s Future Nurse Future Midwife Strategic Assurance Board.

Jayne is a member of the Â鶹APP Confederation of Midwives (ICM) Education Standing Committee, the ICM Research Advisory Network and the Midwifery Subcommittee of the Wellbeing of Women Research Advisory Committee. Nurturing women in higher education to develop their leadership potential, Jayne is an Aurora Role Model and mentor for the Leadership Foundation for Higher Education. Jayne is also a Principal Fellow of the Higher Education Academy and in June 2018 and was awarded Fellowship of the Royal College of Midwives for her service to midwifery education and the midwifery profession: an honour given to just a handful of midwives each year. Jayne was elected as the President of the Nottingham branch of the Royal College of Midwives and has held the position since January 2018.

With a substantial publishing history, Jayne has edited Myles Professional Studies for Midwifery Education and Practice: Concepts and Challenges and for the past decade, has been the co-editor of the seminal textbook for midwives, Myles Textbook for Midwives, which is sold in over 75 countries and has been adapted for use in Sub-Saharan Africa and translated into Korean and Greek.

Jayne highlights how vital service users and patients are to her role in developing and implementing a pioneering Master in Science Midwifery with Leadership programme:

“Support from the Patient and Carer Group has been essential right from the very start of this development. The Professional Statutory Regulatory Body – the Nursing and Midwifery Council (NMC) – sees the service user, patient and carer voice as being fundamental to curriculum development, programme approval, student recruitment and in the teaching and assessment of student midwives……and this is exactly what happens at the University of Leicester."

"When our midwifery programme was approved on the new midwifery standards in 2019, the NMC commended our service users for their extensive involvement in our midwifery programme. The activities they engage in are so wide ranging from writing authentic scenarios for our multi-mini interviews and being a valued voice in our recruitment and selection panels, to contributing to teaching our students. This not only involves sharing their maternity / health care experiences with the students, but also contributing to the leadership modules and being part of a dragon’s den assessment panel assessing final year students presentation of a business case to introduce innovative practices in maternity / health care. This further endorses just how valuable the contributions of service users really are: they have qualities and expertise that they are always so willing to share with our students that go beyond that of being a service user!”

Patient and Carer group

The Patient and Carer Group has enabled me to share some of my experiences of the Health Care System in Leicester with trainee medics, nurses and therapists.

I have a lifelong disability so those experiences go back a looong way, but are still relevant today. They give a perspective over a lifetime and show how the Health Service has grown and developed over 60 plus years – and believe me it has!!

I was approached to be a part of developing this initiative at the University having worked in the NHS as a speech and language therapist, and as a support worker in various health and social care charities.

Over the last 10 or so years the University has helped to change the relationship between patient/ carer and HCP by developing an active partnership between patient/carers and students in different aspects of their training. This has enabled the huge shift from the patient being ‘done to’ to the patient being central and in ‘partnership with’ their treatment providers.

As part of this group I’ve been involved as a co- tutor in certain areas of training that I have personal experience of. This has given them an insight into how having a rare genetic condition; being a long- term carer of several family members and living with a disability has affected my life. The students have been able to ask me how my relationship with the NHS has been, what was good and how could it have been better. They have learnt about the person behind the disability and how ‘person centered’ their future treatment of patients/carers must be.

It’s been a pleasure to engage with student medics, nurses and therapists throughout their training and has enabled me to give back to a system that has supported both me and my family.

Anthony Locke - ‘lockedown' reflections

Lockedown reflections, Anthony describes being ‘puzzled’ after two possible ‘Long Covid’ episodes. “ Both episodes occurred during shielding (a word faded now from Covid Lexicon).“ Anthony felt that by personalising Lockedown, adding the ‘e’. he could neutralise the potential tedium by creating routines ; crossword, practise music, lunch, emails, teleconferences. Anthony recognised the possibility of ‘Compulsive behaviour’ developing and came up with his own treatment, drawing and painting.

Let’s be the first to mention Christmas before the Easter eggs are off the shelves!

Well Done Clare! An opportunity for Patient and carer involvement

Christmas Tree Festival at St Mary’s Church, Knighton

The Patient and Carer Group would like to have a tree at this year’s Christmas Tree Festival to be held in St Mary’s Church, Knighton. This event ran in 2019 and 2021 and has now become an annual event. It might seem a little early to start thinking about Christmas, but we would like to have plenty of time to involve members of the group in decisions about to decorate the tree. The aim is to have a tree that raises the profile of our group, reflects our membership and informs visitors about our work. We would also like visitors to be able to interact with the tree in some way.

In 2021, both the University of Leicester and the Friends of the University of Leicester Botanic Gardens had a tree at the festival. The range of organisations represented was huge including environmental groups, scouting and guiding organisations, schools, nurseries and many others. There were also some organisations relating to care such as care homes, care providers and The Laura Centre, a specialist bereavement charity. The Laura Centre provided little hanging cardboard hearts so that people could write a message about a loved one they had lost and hang it on the tree.

If you would like to be involved in a small project to create a Patient and Carer tree for the festival, please get in touch with Pratibha Patel, Head of Patient & Carer Group by patientcarer@leicester.ac.uk. Here are some of the ways that you could get involved:

• Suggesting possible themes for our tree

• Suggesting ideas for making the tree interactive.

• Making decorations

• Donating an artificial tree

• Decorating the tree

Lockdown Poetry 

Professor Julian Barwell FRCP (UK) BSc MBBS PhD AFHEA, Clinical Geneticist, Academic Champion and Honorary Professor in Cancer Studies at the Department of Genetics and Genome Biology at the University of Leicester, CRN Division 3 Clinical Lead for the East Midlands

Who is the expert?

It started as a virus a little bit like the flu, send them
to the respiratory team, they'll soon know what to do.

Then it seemed to affect the blood, the heam did start to clot,
Check for DIC they said, the haematologist will say if not.

Then came immunology, antibodies are the key,
complemented by steroids and their T cell memory.

Then came the cardiologists, it's got to be the heart,
Just look at what has happened here, myocardial infarct!

Inevitably came rheumatology and genetics, for they always want their go
Standing somewhere near the back, when nobody knows

Waiting patiently in the wings ITU soon gets prepared,
With their tubes and ventilators, comforting the scared

GPs always standing at the front alongside A & E
Never sure what the next patient brings, long covid or M.E.

The message of this story though is not just of the medics,
Think of all of the other staff that never get the credit

The NHS has many parts and has been stretched this year.
Is made up of over a million souls fighting their own fear

Please keep safe and don't despair, We will be here for you if you ping.
Two vaccines arrive within a week, hopefully one for all next spring.

Will you stand in line?

Standing in line with a shield and a spear,
Ready to be lanced, expectant with fear

Soldiers protecting the brother to his left,
A community together to help the bereft

Together we stand, protect one and all
Allow in a chink and the light it will fall

Science gives us phones and planes in the air
Please stand in a line, it's a small price we must bear

Yes, we must trust, it has always been so
Believe in the jab, no pox/polio

It's fine to have doubts, not to know whom to trust,
But our strength as a species, in society we must.

Hands, society and brains: been keys to success
With covid, two of these three are we less

But together in line and with rolled up sleeves,
This is one war we'll win, the truth won't appease

Science works and take your own view
Protect the sick, the many for the few

PhD Update for Patient and Carer Group Newsletter

At the time of my last update – in the Autumn Newsletter – I was waiting for ethical approval to begin my study. A lot has happened since then! I have received ethical approval to conduct my research, which is looking at what it means to involve patients and carers within the University. In particular, I am interested in what we are doing to make you feel like valued members of the team, and where we perhaps have room for improvement. I have been immersed in data collection for some time now, interviewing members of staff from the Medical School and School of Allied Health Professions, and members of the Patient and Carer Group (all of whom will remain anonymous, of course). Thank you to those people that have agreed to speak with me – I know many of you will have opinions on this subject and I wish I could speak to all of you! In the coming weeks, I also hope to run some focus groups with students as part of my study. After Easter, I plan to begin analysing my data, looking for patterns across the interviews and focus groups. It’s incredibly important to me that my research emphasises the patient and carer voice on this important subject. By the end of the academic year, I should be able to share some of my initial findings with you all – hopefully in person!

Leicester Medical School

Leicester Ophthalmologist receives prestigious national award

Dr Sohaib Rufai has been awarded the Ivor Levy prize by the UK Neuro- Ophthalmology Society. More at: /news/2022/march/dr-sohaib-rufai 

Research reveals health inequalities for Black and South Asian women following gestational diabetes diagnosis

The study is led by Dr Elpida Vounzoulaki at University of Leicester and funded by NIHR ARC East Midlands; presented at Diabetes UK Professional Conference 2022. Read more at: /news/2022/march/gestational- diabetes

News

Important Dates

31st of March - Â鶹APP Transgender Day of Visibility

A day to celebrate transgender people but also to raise awareness about the discrimination faced by transgender people worldwide.Learn more about trans figures of the past and present at:

2nd of April -National Autism Awareness Day

In addition, autism awareness and acceptance is celebrated throughout the month of April. More on: https://www.autismtogether.co.uk/autism- acceptance-month/

22nd of April - Earth day 2022

A day when Earth is celebrated and people demonstrate support for environmental protection. More on: https://www.earthday.org/earth- day-2022/ 

May 2022: National Fibromyalgia Awareness Day

Did you know that Lady Gaga has fibromyalgia?

More at: https://nationaltoday.com/national-fibromyalgia-awareness-day/

Visit Leicester events calendar

More events at:

Website reflections – short video

Your contributions would be greatly appreciated Please send at: rachellemaxwell@hotmail.com