What is KPIN?
The Kidney Patient Involvement Network (KPIN) is a network of kidney (renal) organisations, charities and individuals committed to quality patient and public involvement and engagement (PPI/E) who are willing to work collaboratively on initiatives to improve standards and develop patient leaders of the future.
- To embed the patient and carer’s voices and experiences into the planning, delivery and evaluation of health and care services, research and quality improvement initiatives, including service commissioning and health policy.
- To develop adapt and support the application of national quality standards for the involvement of service users and carers.
- To create a network sharing good practice and resources, strengthen existing networks and build an infrastructure that connects and coordinates patient involvement, promoting user and carer interests.
What we’d like to happen…
- More patients and carers understand and believe that they are better informed, know who to approach and can get involved.
- There are more patients and carers actively involved in advisory positions. They are participating in communications activities, taking part in research and service improvement projects and on sitting on decision making panels and committees.
- More health researchers, practitioners, policy/guideline developers and other stakeholders are inspired, confident and better equipped to involve patients and carers in their work.
For further information please look at Kidney Patient Involvement Network poster
Patient and Carer Membership
We would like to encourage all kidney patients, carers and family members to become members of KPIN, regardless of whether you’re already actively involved in aspects of “renal services delivery” or whether you’re only just developing an interest. KPIN is a welcoming, inclusive network and we hope that our members will be willing to take the opportunity to share their knowledge, experience and best practice examples with us on a voluntary basis.
Some of the benefits of membership are:
- Maintaining a clear and compelling value Network proposition
- Help define an effective involvement and engagement strategy
- Help become cultivators and change agents within the Network
- Provide an infrastructure for people to share data and experiences
- Facilitate discussion, experimentation and innovation
- Develop relationships
- Create opportunities for focused interaction on specific topics e.g. Patient Peer Support
- Help identify like-minded people
- Help sustain the Kidney Patient Involvement Network
Members will receive regular KPIN updates.
Kidney health professionals will also have their own area where patient appropriate aspects will be contained. Further details to follow.
A formal funding bid was made to Kidney Care UK in 2019 and in October 2019 we received notice that the bid was successful (Thank you KCUK).
Whilst the formal set-up of KPIN started in late 2019 when, as with all other aspects COVID concentrated the minds on other more important aspects around kidney care and treatment. The KPIN Working Group have slowly been setting up the network and are hoping that the Network will go ‘Live’ at the beginning of July 2020. Watch this space!
We are continually looking for additional support and funding to sustain KPIN going forward.
It must be stressed that from 2017 (initial idea concept) to the current day, KPIN would not exist without individuals (patients, carers, professionals, kidney organisations etc.) giving up and continuing to give up their time to support it. To those who have and are involved, a heart felt Thank You goes out to you all.
I would also like to single out one patient, Mr David Coyle who, without his efforts and support we would not be where we are now. David has moved on to apply his skills within the National Kidney Federation (NKF). Thank you David and good luck!
Core Working Group
The following patients and professionals are working on developing KPIN on a part time basis* or have graciously given their time to the network.
Mr Andy Henwood, KPIN Patient Involvement Facilitator (KPIN Co-Chair)*
Andy is a transplanted Kidney Patient after spending 4 years on Haemodialysis. Andy has been a patient Representative at his hospital unit as well as a patient lead in a number of regional and national programmes; the latest being the Health Foundation Funded Scaling Up programme called Shared Haemodialysis Care. “I am a keen advocate of patients having a greater understanding and involvement in their care, this includes working with health care professionals to help improve our quality of life and their quality of work. We are now creating a patient involvement network where kidney patients and carers with experience, can share their engagement and involvement experiences and learn from each other as well as promote and encourage best ‘co-produced’ practices”
Ms Holly Loughton, KPIN Patient Involvement Facilitator*
After receiving a kidney transplant in 2016 Holly began to develop a real interest in how she could use her skills and abilities to make a positive contribution to the renal community, ranging from charities and patient-led support groups, to NHS England and other healthcare organisations. Over the last several years she have done this in both a voluntary and professional capacity.
Holly is pleased to be part of KPIN because she remembers how challenging and uncertain her own first steps into patient involvement were. She feels she lacked confidence and knowledge of what to expect, and certainly wishes she’d had access to a network of other likeminded patients for mutual support, encouragement, and signposting to relevant opportunities.
Ms Tess Harris, PKD Charity
Tess is CEO of the Polycystic Kidney Disease (PKD) Charity. She inherited PKD from her father along with 3 siblings; she’s currently on daily peritoneal dialysis awaiting a transplant. She’s a patient representative in a number of research programmes and networks in the UK and internationally, including the UK ADPKD and ARPKD Clinical Study Groups, ERKNet (European Kidney Reference Network), TrainCKDis, DRUGtrain and SONG (Standardised Outcomes in Nephrology). “I’m keen to encourage more patients and family members to get involved in improving kidney research and kidney services. It’s critical in making a difference to the lives of people with kidney disease. I want help people feel supported as they learn and develop confidence about patient involvement.”
Professor Paula Ormandy, University of Salford (KPIN Co-Chair)
Paula is a Professor in Long Term Conditions Research, Director of Postgraduate Research. Research expertise includes integrated care, self-management, patient education and information provision using digital and social media. A founding member of the Greater Manchester Kidney Information Network (gmkin.org.uk) and co-chair of the Kidney Patient Involvement Network (www.KPIN.org.uk). Paula is a Q Fellow with the Health Foundation and a champion for improving patient experience and quality of care for people managing multiple long-term conditions.
Professor Nicki Thomas, London South Bank University
Nicki is a Kidney Nurse and Professor of Kidney Care at London South Bank University. She has an honorary nurse consultant post at Barts Health NHS Trust where she has been involved in developing and evaluating the East London Community Kidney Service and runs kidney care courses for specialist nurses. “I am passionate about making sure that patient and public involvement in quality improvement and research is both meaningful and routine.”
Ms Melanie Dillon, KPIN Administrator (Kidney Care UK)*
Melanie is the Kidney Care UK Patient Information Coordinator and provides part-time administrative support for the Kidney Patient Involvement Network (KPIN).
Prior to this she worked for the Renal Association as the Operations Officer for the Rare kidney Disease Registry (RaDaR). She also previously worked at Birmingham Children’s Hospital as a research assistant.
Working Group Advisors
Mr Paul Bristow, Kidney Care UK
Following a successful career in Senior Marketing and Communication roles in the private sector, including a FTSE 100 company, Paul has spent over 10 years working in national charities with a particular focus on long term health conditions, disability and disadvantage, as well as mental health. These roles have included Director of Marketing and Communications at Shaw Trust as well as Marketing and Corporate Communications Director at the Mental Health Foundation.
Paul has been at Kidney Care UK since 2014, where he joined as a member of the Senior Management Team to head up and develop the marketing and communications function as well as developing an organisational strategy for the Charity. As Director of Marketing and Communications, Paul was responsible for rebranding the Charity and developing a new 5 year strategy, including the development and promotion of a range of new patient support services to ensure that the patient voice is at the heart of improvements in health and care services in the UK. Paul was appointed Chief Executive in May 2020, after previously holding the roles of Deputy and then Interim Chief Executive.
Mrs Fiona Loud, Kidney Care UK
Fiona is Policy Director of Kidney Care UK, working with policymakers and others in campaigning for the organ donation opt-out law, improving access to transplantation and patient choice. Previously Director of the Kidney Alliance, she co-authored the review of kidney care, Kidney Health: Delivering Excellence. She works with many groups to improve care standards for kidney patients, such as dialysis choice or patient transport. She set up and chairs the UK Renal Registry patient council and been a member of many NICE kidney guideline groups. She is lay chair of Watford hospital organ donation committee and vice chair of her local kidney patient association at the Lister hospital.
Fiona spent 5 years on dialysis after her kidneys failed, before a transplant from her husband in 2006. She is a Fellow of the British Renal Society and was one of the Health Service Journal Top 50 patient leaders. Her Lancet profile: https://www.thelancet.com/jour
Ms Dela Idowu, Gift of Living Donation
Dela is the founder of Gift of Living Donation an organisation that works to raise awareness of living kidney donation in the Black Community. She is the author of More Than a Match, a book she wrote after coming forward as a living kidney donor for a family member. She is also the co-writer and producer of We Are Family, an educational film on a living kidney donation. She was a member of the Living Donation and Kidney Transplantation 2020 Strategy Implementation Group and is a member of NBTA. She is passionate about improving the quality of life for black patients with CKD through living kidney donation here in the UK and in Nigeria.
Ms Andrea Brown, National Kidney Federation
Mr Michael Nation, Kidney Research UK
Rachel Gair, Kidney Quality Improvement (KQUIP) representative
Professor Martin Wilkie, ShareHD (Shared Haemodialysis Programme)
Kidney patient charities/support groups
UK Kidney Research Consortium (UKKRC)
KPIN is a British Renal Society (BRS) Special Interest Group (SIG)
We continue to build affiliations with other key groups across the renal community or that are linked to kidney failure as well as various patient communities.