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Patients, public and carers involvement stories

We continue to involve patients, public and carers in all aspects of our activities.

Read a selection of our news and stories where we have involved people in our clinical trials, events and initiatives.

Patients are at the forefront of clinical research and one of our volunteers shares his experience here:

Irene Soulsby

My name is Irene Soulsby and I’m part of Kasia’s group (and a member of a few other Public and Patient Involvement groups)

I live in the Gateshead area and worked in Newcastle for 35 yearsIrene undergoing an assesment

I’m a cancer survivor of 18 years, successfully treated, and had my radiotherapy treatment at the General Hospital site in 2003!

I had the opportunity to take early retirement and discovered taking part in research as a “healthy volunteer” and I have taken part in quite a few studies over the years – Parkinsons, “brain and movement” are some of them. I’ve spent quite a few hours in the gait labs and also in the scanners over the years.

I’m very conscious that “I’m here because of research” and that others have taken part in research and trials, etc for me to be here. I want to do the same for others.

Researchers are always looking for new treatments and finding out more about us as people (although we’re all different, some things will be the same). A lot of thought goes into research and researchers spend a lot of time with patients to find out how best to develop this. A new treatment might be discovered through your participation!

Gwen Young

I am 68 married and have many autoimmune conditions of which Type 1 Diabetes is one. I am 1 of 3 family members with the condition which prompted my interest in all things medical! I developed Diabetes at the unusual age of 38, lucky me! Diabetes Care Line was my 1st port of call (after my brother) their leaflets and continued support was invaluable. I am a keen traveller and love visiting unusual places especially in South Africa and Asia. Closer to home in Sunderland I’m a supporter of The National Trust and enjoy visiting properties and gardens in the UK gardening is another of my passions.

I have done a considerable amount of volunteering for Diabetes UK,including developing local groups, and eventually becoming a Trustee. I have spoken to many groups and soon became the go to member of the public when a volunteer was needed, be it to appear on This Morning with Richard and Judy, Look North and many radio interviews. My main passion was in Education as at the time there was a particular need to help newly diagnosed as well as previously diagnosed when leaflets supplied locally were basic. I was a patient representative on the Diabetes Network which involved the development of new guidelines to be used in Primary Care. I was a Lay Assessor for the PCT for 7 years. Fortunately Education has improved dramatically and although still involved with my local PCT I felt the need to use my time in a different way. I have been working with Sunderland University in particular Pharmacy students talking about living with Diabetes and some of the problems we have from time to time. Following on from this I became involved over 5 years ago with the Newcastle Dental Hospital in the development of research funding and ultimately the research which was actually linked to gum disease of people with Diabetes. This group named the Oral and Health PCPI has maintained contact throughout the past 18 months using Zoom, ultimately our small group is now developing within Newcastle Clinical Research Facility.

Research has developed rapidly in the treatment of many conditions but until cures or prevention are found Research is the answer. I have always been one to ask questions and the development of new Research requires a lot of questions before it is reaches the final stage which can be a considerable length of time. Clinical trials follow and they are an essential part of future improvements of new treatments, and ultimately prevention and cures. the Covid pandemic has proved how important clinical trials are. Many years ago I was enrolled by BioBank and they have recently requested me to do some tests relating to antibodies after I had my 1st Covid vaccine.

During the past 6 years of being involved in Research I have felt valued and appreciated which gives me the positivity to do more. However you can do as little or as much to fit in with your lifestyle and let your involvement be linked to your developing confidence. It is very fulfilling and I’ve enjoyed all my “work” as a volunteer for the past 30 years and have no intention of stopping any time soon. It helps to keep my brain active as well as meeting new people who then become friends with whom you can bounce ideas back and forth. Expenses are always offered for transport costs and out of pocket expenses.

Finally I would like to say on a personal note that for me I am helping to give back to the NHS for the amazing treatment and costly medication I continue to receive.

Trevor Newbert

I was born in Kingston Upon Hull in 1944 and progressed though schooling without passing my eleven plus. As a young child I was fascinated by chemistry and general science. However, at school I only had one chemistry lesson. At my request I started an evening class aged 14 and continued through Technical College to HNC Chemistry and MIBiol level Microbiology.

I started work at 15 as a laboratory assistant in a chocolate factory, and at 18 was working for a company processing vegetable oil. When I was 20, I was the chemist at a small lubricating oil & fuel company but my first of four redundances within nine years led me to be managing 25 laboratory assistants in an animal feed company whilst at the same time acting as Deputy Oil Manager! Redundancy forced me to take a job in the fish processing industry for two years followed by two more years working for another animal feed company! Facing redundancy once again I moved to Malton.

At Malton I was employed to install and manage chemistry and microbiological services for an up and coming well known food label. Over the 30 years we progressed to being the most certified independent food laboratory in the country. I chaired several committees as a member of the British Meat Producers Association, including member companies’ compliance to ISO 2001, and EFSIS food safety accreditations. As an accredited EFSIS and ISO2001 auditor I frequently inspected food manufacturing producers across Europe.

My other passions are music, dancing, geology, and rambling, and anything technical.

Much of my time is spent with my lovely wife two sons and five grandchildren.

In 1977 started a folk club in Malton, and for seven years organized a 3-day folk festival. This all moved up a gear when at 40 I joined the Malton & Norton Amateur Operatic Society, and the Pickering Musical Society and being a tenor was lucky to play many roles including male leads. Currently I am a member of the York Philharmonic Male Voice Choir.

I got involved with research groups after I discovered I had early-stage Type 2 diabetes. I had to prove to my doctor that I had a 1 in 4 chance of a coronary in 10 years.

In 2004 after requesting blood tests, I calculated that I had a 1:4 chance of a coronary, but my doctor disputed it saying it was “normal! He reviewed and agreed with me, henceforth I decided to manage my own health. Subsequent monitoring discovered that I had Type2 diabetes! Now, 17 years later I have never had or needed medication.

My research and questioning into Type 2, led me to be invited to join the Diabetic Research Network and be trained to vet future research documents. During my training in London, I met up with a lovely group of trainees from Newcastle! Since then, I have continued to answer the call to travel to Newcastle from Malton, North Yorkshire whenever needed.

Why do I think research is important? One has only to see in the media a young child with life limiting conditions receiving the latest medical breakthrough! Anything that is of help is worthwhile!

I have always said “where’s there’s a will…there’s a way” If you have the will there will be a way to help! You do not need a science background only a bit of common sense to do it. And it can be great fun! The research staff are overwhelmingly grateful, especially when we come up with an alternative view!!

Come and join us.

David Black

I am an independent voice and critical friend offering advice, opinions and guidance to groups and organisations seeking citizen engagement and involvement. Following experiences with the health, social care system and government services I decided to work with organisations to make things work better for others. My background is in legal aid welfare benefits and in addition I worked for NHS England investigating clinical complaints. I work with the Not Equal Network at Newcastle University’s Open Lab, sharing my views and opinions regarding the work they do in collaborative research and innovation for technology that supports social justice. As part of the UK government’s Healthy Ageing Grand Challenge I undertook assessment of funding applications and reviewing proposals for the Healthy Ageing Catalyst Awards. I am a member of the Care Home Interest Group (CHIG) working with researchers at the Population Health Sciences Institute at Newcastle University. I’ve experience as as a patient/public representative on a number of research studies:

The PriDem Patient and Public Advisory Board based at the Institute of Health and Society.

IMPACT Study Patient and Public Involvement Panel based at the School of Dental Sciences, Newcastle University.

Dental Decisions Study, participation in ongoing co-production group regarding enhancing dental treatment decisions for people living with dementia.

What encouraged you to get involved in research?

I joined the VOICE research community of public, patients and carers to make a positive contribution and to try and improve the lived experience of ageing both now and in the future. VOICE, the National Innovation Centre for Ageing and NIHR Newcastle Clinical Research Facility PPI Group (DENTAL CRF, CARU, CRF) has introduced me to so many opportunities and it has allowed me to make a real difference. I have attended many events and I have met a wide range of people from all walks of life and from all over the world. They opened my mind to ideas and experiences that I could never have hoped to discover prior to joining the research community. Some of the subjects I’ve explored have included: international designs developed to improve the lives of those with dementia and carers; innovations in electric vehicles; social exclusion and loneliness; technology that supports social justice; and implementing the Great North Care Record.

Why do you think clinical research trials is important?

Clinical trials are essential to the development of new interventions that help people to live longer, with less pain or disability. One of the greatest benefits of participating in clinical trials is that they advance the knowledge of medicine. For individuals, these trials offer access to a particular therapy that is not available outside of the trial. Trials can be for therapies for rare diseases and open up access to the latest, most advanced care possible.

What would you say to others who are considering getting involved in research?

People who get involved in research have different reasons for wanting to do it. I started from a position of having difficult experiences and appreciated being able to do something positive with it. Others have had very good experiences, and see involvement as an opportunity to ‘give something back’.
As a research participant you can leave a research study at any time. If withdrawing from the study, you should let the research team know that you wish to withdraw. You may provide the research team with the reason for leaving the study, but you are not required to provide a reason if you don’t want to.