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PenCLAHRC Public Involvement Group - PenPIG

On this page: Who are PenPIG? | Other groups we work with | PenPIG News Meet PenPIG

Who are PenPIG?

PenPIG (Peninsula Public Involvement Group) is PenCLAHRC's service user involvement group. They are a group of patients, service users and carers who volunteer their valuable time to make sure PenCLAHRC's research is relevant to the needs of the public.

PenPIG are involved in a wide range of activities related to the running and work of PenCLAHRC. They help us to recruit new staff, are co-applicants on projects, advise on both projects and internal matters, support user involvement in on-going research projects, attend CLAHRC Management Board meetings, present at conferences and train new medical students. 

You can find out more about the PenPIGs themselves in "Meet PenPIG" below.

Other involvement groups we work with

PenCLAHRC also works with several other groups of patients, families, carers and the public in order to provide 'critical friends' to research teams working in childhood disability, the impact of the environment on human health and mental health. We have also had useful (and enjoyable) 'Learning Exchanges' with two other CLAHRCs - there are more details on our "Collaboration" page.

Family Faculty

The Family Faculty brings together parents and families of disabled children (mostly within Devon) to guide and support research being carried out by PenCRU (the Peninsula Cerebra Resarch Unit) addressing issues that are relevant to disabled children and their families, and resulting in beneficial new treatments and services.

HEPE

HEPE - the Health and Environment Public Engagement group - are based  in Cornwall and associated with the European Centre for Environment & Human Health in Truro, funded by Exeter University Medical School and the European Union. The Centre investigates the impact of the environment on human health and the complex links between health and environment.

PenPIG news

Many of our PenPIGs are active in their communities and other volunteer groups around the South West, and often tell us of events they have been to and other projects they are involved in. We will bring you news of what PenPIG have been up to when we can.

August 2017

Our wonderful PenCLAHRC is one of 13 that have been established across the UK. A small team of people keep an eye on all 13 organisations, and write regular newsletters. The latest one of these focussed on Public and Patient Involvement activities, and includes news of what our PenPIGs have been up to! You can read the newsletter and subscribe to future editions at the CLAHRC Partnership website.

December 2016

  • Research Question Prioritisation 2016

The CLAHRC is now over halfway through the Annual Research Question Prioritisation process, with enthusiastic invovlement by PenPIG in that process. So far we have held two workshops to discuss the 55 questions that were submitted and support PenPIG to chose those they believe most closely match the needs of local people, could help the NHS to save money or would make large improvements to peoples' lives. The process will continue next year with PenPIG being included at the final Stakeholder meeting to choose two questions to become research projects.

  • 'Celebrating the Difference We Make'

Two of our PenPIGs were invited to the NIHR Clinical Research Network Annual Staff meeting in Leeds to speak about how they experienced being involved in healthcare research. Lynn Tatnell and Diana Frost were asked to speak about "What could patients do for us - putting the patient at the heart of our organisation...See your work through the eyes and experiences of some of the patiens who have taken part in our studies..." so that NIHR staff could understand how their work impacted on patients.

Lynn commented:

I had about 30 eager faces listening to what I said about my involvement with medical research...it must have gone on for at least 40 minutes and was so rewarding.  It just came from my heart, how I felt, how our team supported us, how ‘thank you’ payments were so vital, how the NIHR don't pay thank you payments!  How Specialists need to have PPI involvement for the patients’ sake.  How we need a PPI national database website...how for instance the Cadence study was not so good for patients and how lots of other projects are so rewarding for the patients and public.  Feedback being optimal and staying the course of a project so beneficial over the years. How just two is not enough for PPI involvement that is why our group is around 15 so we get many different views and how we take the best general vote so to speak.  How the pathways for patients must be empathetic and thoughtful (I spoke about my Daughter too)... I just spilled out all and the crowd applauded me and some stayed at the end of the session!  I think I represented PenPIG to the very best of my ability and am sure everyone was delighted!  I also asked questions back when they approached me... "

and Diana also reported:

On the 14th of December myself (Diana Frost) and Lynn Tatnell with 10 other patients attended this event in Leeds. It was an event held at the NIHR CRN National Co-ordinating Centre Annual Staff Meeting in Leeds where they invited  Patient and Public Involvement representation to inform the Leeds office staff the way to involve laypersons in their work, which was the first time that this had been done. We were buddied with a partner, mine being Andrew Rutherford and Lynn Tatnell being Jessica Pool.

 

It was a full day talking to various staff about our experiences in the NHS, and being members of PENPIG within PenCLAHRC; and the many projects we have and are involved in, and how we find we as a patient group make a difference in helping making health research a better and improved pathway for all within the NHS.

 

We had a presentation by Dr Claire Morgan to explain what the AGM was about and to welcome the 12 patients and then we met our buddies. We were then split into groups for them to ask us why we became involved in research.  In the groups where staff who were patients at some stage, but their jobs were not front line and most worked in offices away from patients, they never had spoken to patients before. This was to encourage and to take forward a group of patients and involve them in talking to NIHR staff that patients were important and their varying experiences to celebrate making a difference within the NHS health system for patients, public and carers.  


Later, Derek Stewart an Associate Director discussed how we could go forward with PPI, also to include and create a working forum, we put together a video, which we will use to encourage other patients to become involved in making a difference within medical research in the future.  Derek explained that this was just the beginning for involvement with PPI and the teams in Leeds, London, Newcastle and Liverpool.

October 2016

  • NW Coast CLAHRC 'Learning Exchange'

Several of PenPIG were involved in a 'Learning Exchange' with our sister-CLAHRC in Lancaster, the NorthWest Coast CLAHRC.

Meet PenPIG

These biographies are still in development, but you can find out more about some of our PenPIGs below:

 

Alex Aylward

County: Devon

PenPIG member since: 2013

Projects involved in: Patients at the Centre, supporting researchers with their patient involvement and lay summaries for project funding applications

My name is Alex Aylward and I joined PenPIG through my Lay Member role in Northern Eastern and Western Devon CCG.  I have been a patient representative and lay member in the NHS in Devon covering various roles for last 13 years, and believe in patients as expert users of services and that they can contribute to service improvements.  Hence my interest in research as being fundamental to clinical care pathway development, and service design and implementation. I have been a lifelong user of NHS services with my main interests in sensory impairment, cardiovascular disease, caring, and mental health.

Image coming soon!

Andrea Shelly

County: Devon

PenPIG member since: 2016

I became interested in Medical research after starting a HealthCare Professional course at Plymouth University. Due to my own Mental Health issues, I was unable to complete the course, yet research led me to finding Mindfulness; an alternative NHS support mechanism to manage Depression.

My main area of interest is Mental Health and all that encompasses.  In addition, having experienced a variety of clinical specialities, research into long term health conditions such as Asthma, Heart Disease and Women’s health are also close to my own heart. 

Ben Marshall

County: Cornwall

PenPIG member since: 2012

As a patient, I have primary progressive multiple sclerosis and am interested in guiding research in this area and many others. I am also a member of HEPE (the Health and Environment Public Engagement group for our European Centre for Environment and Human Health in Truro).

Chris Marriott

County: Devon

PenPIG member since: 2016

I joined PenPIG in 2016. I have spent the majority of my career in the Police being involved in Child Protection and Safeguarding Adults. I am currently the PenPIG Membership Secretary.

Diana Frost

County: Devon

PenPIG member since: 2014

I have been involved since 2010 when I took part in the AAA study (Avoidable Acute Admissions) which resulted in going to the Nottingham synopsis where with others we presented a 9-minute talk of the research we did. I then joined PenPIG and have done some amazing research projects helping me with my many health issues and helping others with my experiences.

Heather Boult

County: Devon

PenPIG member since: 2011

Projects involved in:  NHS Dental commissioning guidelines for dentistry and paediatrics dentistry; MEdmi; Lay reviews for NIHR. 

I became interested in PPI after spending 18 years in and out of various hospitals following my daughter's liver transplant and son's heart surgery. I want to improve the experience for childrens in hospital, their input in their treatment, transition to adult services, support from school and education into health for families. I am also interested in mental health, transplants, womens' health and long term health conditions. 

Jim Harris

County: Cornwall

PenPIG member since: 2010

My name is Jim Harris and I live in Penzance with my wife Cath and my son Sam. I have multiple long term medical conditions, I use crutches to get around, and take a considerable amount of medication to help me function daily. I have been involved in medical research since 2007 as a member of the Southwest Diabetes Research Network steering group. I do lay reviewing from the NIHR, worked with Diabetes UK GAP, been a co- applicant on a diabetes research trial, presented at several conferences like INVOLVE, and my latest involvement is with the KCCG Patient Reference Group and also my surgery's PPG. I am also a patient representative for SW AHSN and volunteer with the NHS England Dental Commissioning Service working on the new guides for all Dental speciality services. Participating in all these health services research groups keeps me from under my wife's feet (well that’s what she says). 

Julie Harvey

County: Devon

PenPIG member since: 2011

I developed an interest in health research after struggling with many medically unexplained symptoms, many related to my own mental ill health.

My main health research interests are: Mental Health; Adolescent mental health; Mental health and how it impacts our physical health; Heart disease; Antibiotics use;

I am currently involved in the Cadence, ESSEnCe, and IMPACT studies.

Lynn Tatnell

County: Devon

PenPIG member since: 2010

I am interested in a broad spectrum of medical research. With my wealth of health experience for me and my family I find that many illnesses and disabilities over-lap each other which is challenging for any medical research project. I am passionate about making health care better for others and also passionate about specialists communicating with their patients and carers on an equal level. Teamwork works wonders as I have learnt so much from different experiences - it is such a valuable source of life experience that can either cement your original opinion in stone or change your views completely! I also want to combine mental health and physical health more closely as a holistic view of our well being...

Malcolm Turner

County: Somerset

PenPIG member since: 2016

My main reason for working with PenPIG relates to my interest in a wide range of medical research and my aim of helping people to help themselves in health-related matters. I live in a rural area of Somerset and so am motivated to try to reach the people living in my community who may be isolated and lonely resulting in an impact on their general health and well-being.

I am a qualified health walk leader, a Friend of Musgrove Park Hospital (Acute Hospital – Taunton), an Ambassador for the Patients Association and the past chair of my local Patient Participation Group on which I am still actively involved as a committee member.

Having been involved in ‘Wellbeing Our Way’, (National Voices), I submitted a Peer Support blog, (relevant to my lived experience), in which I have described myself as a ‘helper, carer and facilitator’ in my local community.

My background of an M.Sc. in Local Economic Development from Glasgow University, and wide ranging business experience, enables me to take a view on the costs and impact of health-related support across the region – we can’t do everything.

My Research Interests are related to Dementia, Diabetes, Prostate Cancer and any health-related research into the effects, (on both physical and mental health), of isolation and loneliness.

Nigel Reed

County: Devon

PenPIG member since: 2013

I have been involved in medical research for about 4 years after taking early retirement from my previous role as a senior manager at the Met Office, and then being a participant in a Randomised Control Trial.  My main interests are in Mental Health research and research which has the potential to improve the treatment and care of vulnerable elderly people. Within my areas of interest I try to be involved in projects from their inception right through to the dissemination of results. I have now gained experience across all stages of research projects.

 

Upcoming Events

Oct
26

Searching and Review Clinic

ITTC Building, Plymouth Science Park (Room N14)

***We regret that this clinic is fully booked.  Please visit http://clahrc-peninsula.nihr.ac.uk/searching-and-review-clinics for a list of...
More information

Oct
26

Searching and Review Clinic

The University of Exeter, St Luke's campus, South Cloisters (Room 2.17)

These clinics have been set up to help the PenCLAHRC Evidence Synthesis Team to manage and respond...
More information

Calendar

News

Partner in Focus: Plymouth Hospitals NHS Trust (PHNT)

20 October 2017

As a partnership of NHS Trusts across Devon, Cornwall and Somerset, plus the Universities of...
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Partnership with Dartington Service Design Lab boosted by strategic collaboration with PenCHORD

18 October 2017

The Dartington Service Design Lab is entering into a strategic collaboration with PenCHORD (the Peninsula Collaboration...
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Prof Adrian Taylor appointed Associate Dean for Research in PUPSMD

02 October 2017

Following his recent appointment as Associate Dean for Research for Plymouth University Peninsula Schools of...
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News

Research Projects

PenCHORD: Evaluation of the PenCHORD Health Service Modelling Associates programme (EmMA)

Theme: Evidence for Policy and Practice

This evaluation (EmMA) provides an independent and qualitative review of the first iteration of the...
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Improving the mental health of children and young people with long term conditions

Theme: Mental Health & Dementia

Systematic review evaluating the effectiveness and cost-effectiveness of interventions aimed at improving the mental health...
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Research Projects