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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 - the North West Coast CLAHRC in Lancaster and North-West London CLAHRC.

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.

November 2017 - INVOLVE @21 Conference, London

The National Institute of Health Research (NIHR) has been running their annual 'INVOLVE' conference for the last 21 years, and so when one of our PenPIGs had the opportunity to attend this year, we asked her to send us back a report.

Andrea starts "PenCLAHRC provided the opportunity to attend the Involve Conference in Westminster, London.  The day focussed on “celebrating the progress of public involvement in research and consider the opportunities ahead”

It promised to be a very full day, structured with presentations from a diverse community of people engaged with Involvement.  After the opening plenary session, to include Zoe Gray, Director, INVOLVE and Louise Wood, Director of Science, Research and Evidence, Department of Health, you knew the day was going to be jammed packed with networking, poster presentations and getting to know more about involvement."

Andrea was delighted to see posters about involving older people - including those with dementia - and you can download and read the rest of her report.

October 2017

PenPIG get involved in a huge variety of healthcare research with us, including areas where involvement is often seen as 'too difficult' or 'not relevant'. In the PPI team, PenPIG and the rest of the PenCLAHRC, we believe that involving patients is relevant to everything, and (with good support and a bit of training) there is nothing that patients cannot understand and help with. As proof of this, Kate Boddy from the PPI team, and Lynn Tatnell from PenPIG were involved in some Health Economics research earlier this year and went on to write a paper with the Health Economics researchers....that has just been published! To find out about the initial research and read or download the paper, visit their page in the journal of Applied Health Economics and Health Policy

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.

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

Jan
09

PPI Advice Clinic

The University of Exeter, St Luke's campus, South Cloisters

Patient and Public Involvement Clinic What? These clinics have been set up to help the PenCLAHRC PPI Team manage and respond...
More information

Jan
11

Searching and Review Clinic

Room N14, ITTC Building, Plymouth

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

Calendar

News

Collaborative Action for the Delivery of Effective Person-Centred Coordinated Care

27 November 2017

A paper published in the journal Health Research Policy and Systems, reports on a tactic...
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Research Hopes to Improve Dental Visits for Children with Autism

21 November 2017

  Inspired by her own experience as a mum to child with autism, a dental hygienist...
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New Study Underpins the Future of Person Centred Care

15 November 2017

Health provision is moving away from disease-based models to person centred delivery. This study addresses...
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News

Research Projects

The Zone - Icebreak Personality Disorder Pathway Redesign.

Theme: Evidence for Policy and Practice

The aim of this project will be to assess the impact of a new treatment...
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Care Under Pressure

Theme: Mental Health & Dementia

Realist review of interventions to tackle healthcare professionals’ mental ill health and its impacts on...
Read more

Research Projects