Category: Opinion piece

Dying Matters Week: Ensuring you and your loved ones are #InAGoodPlace at the end of life

This week we are highlighting an important cause – Dying Matters Awareness Week. Dying Matters is a campaign run by Hospice UK that aims to get us talking more openly about death, dying and bereavement. The focus of this year’s awareness week is on what it means to be #InAGoodPlace when we die. To be in a good place at the end life involves having your physical, emotional, financial and spiritual needs met and getting the right care and support. We can only achieve this if we get people thinking about, and talking through, their wishes for end of life care.

National HIV Testing Week: Give HIV the Finger!

This week has marked National HIV Testing Week. This year’s campaign focusses on promoting regular testing among the most affected population groups, to reduce the number of people diagnosed late and living with undiagnosed HIV.

Why test for HIV?

People can live with HIV and display no symptoms for several years so testing is essential to know your HIV status. Being diagnosed as early as possible helps reduce transmission, allows you to start treatment early and ultimately improves health outcomes. With effective treatment, there is no risk of passing the virus on to sexual partners (Undetectable = Untransmittable).

A Midwife in the Pandemic

This World Health Day, Alison Perry shares her experiences as a research midwife returning to the front line of clinical care during the COVID-19 outbreak. #SupportNursesAndMidwives

My name is Alison and I’m the Lead Research Midwife and manager of the Women’s Health Research Centre at Imperial College. My work is at the intersection of health and science and COVID-19 has hit this space like a bolt.

I lead a team of research clinicians (including many midwives) and support a portfolio of clinical research related to reproductive health and childbirth.  Since the outbreak, most of that research is on hold.

Nursing in an epidemic: reflections on HIV nursing in the 1980s and the relevance for COVID-19 today

This World Health Day, Jane Bruton reflects on her time as an HIV nurse during the early years of the HIV pandemic, and shares observations relevant to the COVID-19 outbreak today. #SupportNursesAndMidwives

2020 is the International Year of the Nurse and Midwife and this year’s World Health Day (7 April 2020) celebrates the role that these professions play in keeping the world healthy. Both nurses and midwives are at the forefront of the COVID-19 response. And every day, as I read the experiences of nurses on the front line, it takes me back to my time on the ward.

In 1981, thirty-nine years ago, I qualified as a registered nurse in the UK.

Pandemics, infodemics and the impact on people like you (and me)

By Professor Helen Ward, Patient Experience Research Centre, Abdul Latif Jameel Institute for Disease and Emergency Analytics, School of Public Health, Imperial College London.

“Of all the gin joints in all the towns … of all the one-horse towns … why did this virus have to come to mine?”

The words of my friend Paul who is living in an Italian town under lockdown because of the novel coronavirus epidemic. His frustration is palpable as his plans for travel, work and social life were put on hold for at least two weeks (and subsequently extended for another three). But he reasons, “despite the fact that it’s not a killer disease, we can’t all go around with pneumonia.

Four views on co-production

The recent event “Co-producing research: How do we share power?” aimed to share experiences and provide practical examples of how power can be shared in a co-produced project. Co-producing a research project is an approach in which researchers, practitioners and the public work together, sharing power and responsibility from the start to the end of the project, including the generation of knowledge (INVOLVE – Guidance on co-producing a research project).

Ninety-three patients, carers, researchers and public involvement leads attended the event. In this blog, four people share their experience of the event: John and Rebecca who spoke at the event about their experiences on a project; Anna and Erica as attendees.

9 things I have learnt about Public Involvement – A service user’s perspective

By Philippa Russell

I am a recent mature graduate from London South Bank University, where I studied a degree in ‘Health and Social Care: Administration & Management’. Over the years I’ve managed to accumulate vast lived experience from being a service user in healthcare, both as a patient and family member. I have written about what having a brain injury has taught me here.

As part of my course I had a placement with the Patient Experience Research Centre (PERC) at Imperial College London, who promote participatory approaches to healthcare and biomedical research. They advise and support researchers at Imperial to do PPI (that is Patient and Public Involvement, not payment protection insurance!)

“Seldom heard voices”: Should we do Patient and Public Involvement (PPI) differently?

On Tuesday afternoon we welcomed Dr Mel Hughes to join a discussion at the biannual Imperial and Partners PPI in Research Forum on involving “seldom heard voices”. Mel is a principal academic in social work; academic lead for the Bournemouth University (BU) PIER (Public Involvement in Education and Research) partnership and Deputy Lead for the newly formed research Centre for Seldom Heard Voices at BU . Mel’s perspective was interesting for two main reasons: (1) her commitment to working with “seldom heard voices”, and (2) her experience of doing public involvement both in education and social work, whereas PERC tend to focus on research.