Special Interest Groups
Transition for young people and Shared Decision Making
There has been a lot of talk in recent years about ‘patient involvement’, ‘shared decision making’ and ‘person centred care’.
These are important priorities. But clinicians know well how challenging it can be to work within existing systems and budgets to deliver truly person centred care. Our patients perhaps know this even better.
This special interest group was formed from two networks who have a longstanding interest in person centred care: a network of renal clinicians who had previously participated in projects relating to shared decision making, and a network of clinicians working on improving the experience of young adults as they move from paediatric to adult services.
The purpose of this special interest group is to enable sharing of best practice by enabling clinicians to learn from each other’s experiences.
We want to make people aware of existing excellent practice, of ongoing projects and of useful resources.
Who we are?
An extensive network of clinicians working with people with kidney disease across the UK.
If you are interested in joining our mailing list, please contact: Rachel Gair – [email protected]
Our Terms of Reference can be Found Here.
Our Working Group is:
Chair – Transition
Dr Tina Chrysochou – Dr Constantina (Tina) Chrysochou is a Renal Consultant at Salford Royal Hospital NHS Foundation Trust and an Honorary lecturer at the University of Manchester.
She is the department lead for Transition Medicine and Inpatient governance. Her clinical commitments include glomerulonephritis, renovascular disease, dialysis clinics and general nephrology. She is the Oldham Kidney Care Centre lead for service development. Her PhD was in clinical and radiological predictors of outcome in atheromatous renovascular disease; other research interests include fibromuscular dysplasia and nephrogenic systemic fibrosis. She has been an active lecturer for the MRCP exams through Pastest for 10 years.
Chair – Shared decision making
Dr Rob Elias – Rob is a Consultant Kidney Doctor (Nephrologist) at King’s College Hospital NHS Foundation Trust in London. He is a member of the Programme Board for Transforming Participation in Chronic Kidney Disease. Rob’s education includes his Philosophy Degree at Cambridge followed by Medicine and research into decision-making, including a doctorate entitled ‘How decisions about dialysis are made’. He previously worked as a Clinical Advisor at NHS Kidney Care. He is co-chair of the BRS Transition and Shared Decision Making special interest group. Rob is also ‘Candour Guardian’ for King’s College Hospital Trust. He likes swimming in the Welsh sea and being up mountains with his family.
Vanda Fairchild – Vanda is a registered nurse with a wealth of experience in renal nursing. She completed her renal course in the early 90’s and has subsequently worked in a wide variety of renal care settings across London. Her current role at Guys and St Thomas’ NHS trust as the young adult clinical nurse specialist involves her coordinating the transition, transfer and support of kidney young adults. Vanda is an active participant of the established national renal youth worker/ nurse specialist network that shares good practice and organises events to improve peer support and self management skills for young people throughout the UK. Having two teenage children at home she has first hand experience of some of the day to day challenges that adolescence brings to both the young person and their parents. She is passionate about raising awareness amongst the wider multidisciplinary team about the importance of having an interested and capable workforce, who have the necessary skills to engage with young adults and provide high quality support. Vanda is also a martial arts coach tutor, international referee and club instructor and runs a successful children and adult’s aikido club based in South East London. She is a keen gardener and loves the great outdoors.
Alex Hamilton – Alex is a Renal/GIM Registrar in the Severn Deanery and is currently undertaking a BKPA/Kidney Research UK fellowship investigating the impact of ESRD requiring RRT on the lives of young adults. Alex is the Chief Investigator of the Surveying People Experiencing young Adult Kidney failure (SPEAK) study and is also part of the UK Renal Registry.
Al Ferraro – Alastair studied Medicine at Cambridge University and Oxford Medical School. He then undertook a range of junior medical jobs in hospitals in Bath, Oxford, Bristol, Leeds and Nottingham. His Renal Specialty training was undertaken in the West Midlands Deanery, and included an MRC-funded PhD in Immunology at the University of Birmingham (2005-2008). He was appointed a Renal Consultant at Nottingham University Hospitals (NUH) in 2009 – and has contributed to the full breadth of adult renal services in Nottingham since then. His areas of particular clinical interest are Haemodialysis, Vasculitis, and Renal-Obstetric care. In addition he has led, or contributed to, a range of quality improvement projects, including at national level. These particularly focus on enhancing patient involvement in the management of their long term (renal) conditions. He is a CQC inspector and has a governance role within NUH. More recently he has also been significantly involved with the implementation of NUH’s strategy for clinical IT. He is married to another hospital doctor, and has two children of primary school age.
Eleri Wood – Eleri has specialised in kidney nursing since qualifying in 2000, and is currently a Nurse Consultant at King’s College Hospital, London. She particularly enjoys teaching and supporting people to take control of their health and maximise their quality of life. She leads the patient-to-patient peer support service at Kings, is chief investigator of a study exploring the value of peer support for people who start dialysis suddenly, and regularly facilitates other kidney units across the country to set up and maintain their own peer support services.
Arvind Nagra – Paediatric nephrologist, Southampton
Rachel Gair – Rachel is the Person Centred Care Facilitator for the Transforming Participation in Chronic Kidney Disease programme and in this role she works closely with the clinicians and patients involved in the programme. She is the Expert nurse Specialist on the Programme Board and is also on all three of the workstream groups. Rachel is a Registered General Nurse and trained at Hammersmith Hospital in London. She has worked at several large renal units and was the matron for renal services in Plymouth for 10 years. Following this she was the nurse director for the Peninsula renal network where she developed a special interest in improving services for young people with kidney problems, linking it to the concept of person centred care. She helped establish and currently coordinates the Renal Shared Decision Making and Transition Network who are a group of professionals interested in young people’s services and how these can be underpinned by person centred care.
Paul Bristow – BKPA
Sarah Green – Sarah Green is a kidney patient who volunteers at Salford Royal Hospital’s renal young adult clinic, runs their support group and works with Hope KPA and GMKIN (Greater Manchester Kidney Information Network). She is also a member of the British Renal Society’s shared decision making and Transition special interest group.
Young person forum
This group has been established by a group of young adults who would like to be the credible voice for young people with kidney problems.
They would also like to provide a service to support research and Quality Improvement nationwide. So for example test surveys, patient information and provide an expert voice into planning of young adult services.
Transition Toolkit Presentation
Transition care innovation talk
Setting up services for young people: Perspectives, Practice and Planning – Presentation
Setting up services for young people: Perspectives, Practice and Planning – Event Newsletter
- RCP acute medical unit toolkit for young adults :
- Above is based on the below article :
- Nurse-led cardiac adolescent and transition service – The Academy of Fabulous NHS Stuff from Dr Theresa Porrett’s Tweet
List of renal units with contact details of Transition lead + key worker
|Alison Jenkins||Key worker||North Bristol Trust||[email protected]||Dr Chris Dudley|
|Daley Cross||Youth Worker||Oxford||[email protected]||Dr Paul Harden|
|Helen Ritson||Key worker||Newcastle||[email protected]||Dr Laura Baines|
|Leanne Savage||Key worker||Plymouth||[email protected]||Dr Hilary Cramp|
|Marie-Louise Turner||Key worker||St Georges – London||[email protected]||Dr Joyce Popoola|
|Ria Taylor||Key worker||Royal Devon & Exeter||[email protected]||Dr Coralie Bingham|
|Terri Ellwood||Youth worker||Nottingham City Hospital/Derby||[email protected]||Dr Cath Byrne|
|Vanda Fairchild||Key worker||Guys Hospital – London||[email protected]|
|Gemma Hockey||Key worker||Royal Free – London||[email protected]|
|Shaun Thomas||Youth worker||Wales – Cardiff||[email protected]||Dr Sian Griffith|
BRS Vascular Access
The BRS VA SIG was set up in December 2015. This is a multi-disciplinary group consisting of haemodialysis nurses, vascular access nurses, haemodialysis patients, nephrologists, vascular surgeons and an interventional radiologist. The main aim of the group is to identify, develop and clarify what is best practice in vascular access care, focussing particularly on the care of vascular access once it is in place. We aim to develop materials to identify and clarify best practice and materials to support units in implementing this. This will promote more consistency in vascular access care across the UK and support units in the implementation of best practice guidance.
We work closely with other organisation to achieve some cohesion in vascualr access care across the UK. Organisations we have worked with so far include RA-BRS Patient Safety and VASBI (Vascualr Access Society of Britain and Ireland) SIG. We have so far completed:
- Clinical Practice Recommendations for the Use of Buttonhole Cannulation for Arteriovenous (AV)Fistulae
- Recommendations for Managing Life Threatening Haemorrhage from AV Fistulae and Grafts.
We are currently have 3 active projects:
- Complete clinical practice recommendations on cannulation of AV fistulae and grafts along with a change package to assist haemodialysis units with the implementation of these recommendations
- A package of tools to help units prevent and manage life-threatening haemorrhage (LTH) from AV fistula and grafts
- A national survey of the structure of vascular access services.
RELATIONSHIP TO BRS:
We are a BRS special interest group with BRS council reviewing and approving our work. We are accountable to BRS for our work.
Journal of Kidney Care Article 2018
BRS VA SIG TOR
BRS VA SIG Members
BRS VA SIG Scottish RA Presentation 2016
BRS VA SIG UKKW Presentation. 2016
EDTNA UK Seminar 2016 Cannulation Workshop
Dialysis Patient Card_Front
Dialysis Patient Card_Back
Information for Patients AVF and graft BRS
Recommendations for Managing LTB of AVF and AVG 2018=
Bleeding from a Dialysis Fistula
Alayne Gagen -Chair (March 2017 – March 2020)
Vascular Access Nurse, Manchester – [email protected]
Lynsey Stronach – Co-Chair (Jan 2019 – Jan 2022)
Nurse Practitioner for Haemodialysis and Extracorporeal Circuits. Great Ormond Street Children’s Hospital – [email protected]
Katie Fielding – Professional Development Advisor – Haemodialysis Derby Teaching Hospitals NHS Foundation Trust – [email protected]
Nicki Angell-Barrick – Haemodialysis Unit, Milton Keynes – [email protected]
Carmen Barton – Matron, Evalina London Children’s Hospital – [email protected]
Liberty Berino – Senior Sister and Vascular Access Nurse, Derby Teaching Hospitals NHS Foundation Trust – [email protected]
Francis Calder – Vascular Surgeon, Guys and St Thomas’s NHS Foundation Trust, London – [email protected]
Paula Debling – Senior Sister, Home Haemodialysis, Kent and Canterbury Hospital – [email protected]
Colin Forman – Vascular Surgeon, Royal Free Hospital, London – [email protected]nhs.net
Suzi Glover – Matron, University Hospitals of Leicester – [email protected]
Paul Gibbs – Vascular Surgeon, Portsmouth – VASBI President – [email protected]
Stephen John – Consultant Nephrologist, Heart of England Trust – [email protected]
Rob Jones – Interventional Radiologist, University Hospitals Birmingham NHS Foundation Trust – VASBI Council – [email protected]
Sarah Kattenhorn – Vascular Access Nurse, Portsmouth – [email protected]
Mick Kumwenda – RA Guidelines – Vascular Access for Haemodialysis Consultant Nephrologist, Glan Clwyd Hospital, Rhyl, Denbingshire, LL17 0EU –[email protected]wales.nhs.uk
Cora Lahart – Paediatric Haemodialysis Nurse, Manchester – [email protected]
Freya Murch – HD Nurse, Southmead Hospital, Bristol – [email protected]
Jacqueline Ross – Senior Charge Nurse, Ward 404/405, Aberdeen Royal Infirmary (Retires in June 2018) – [email protected]
Alison Swain – Renal Vascular Access Nurse, Royal Berkshire NHS Foundation Trust – [email protected]
William Withers – bKPA – Patient Representative – [email protected]
Anne Young – Clinical Sister, Renal Unit, Tyrone County Hospital, NI – [email protected]
Victoria Jackson – Sister, haemodialysis and CAPD, Manchester University NHS Foundation Trust. Manchester Royal Infirmary – [email protected]
Nicola Reid – Clinical Psychologist, Manchester University NHS Foundation Trust. Manchester Royal Infirmary – [email protected]
Margaret Aitken – Vascular Access Nurse, Glasgow. Nurse Lead – [email protected]
Kristine Paule – VASBI Co-Lead – [email protected]
Sarah Dixon – Vascular Access Nurse, Oxford – [email protected]
Justine Dodson – Vascular Access Nurse, Guy’s and St. Thomas’s NHS Foundation Trust, London – [email protected]
Helen Spooner – Advanced Nurse Practitioner, Wolverhampton – [email protected]
Julie Wishart – Vascular Access Nurse, Belfast – [email protected]
James McCann – KQuIP Lead – [email protected]
Hugh Gallagher – Consultant Nephrologist, Epsom and St. Hellier Projects Workstream, KQuIP – [email protected]
Victoria Powell – Project Manager, KQuIP – [email protected]
Scottish Vascular Access group
Margaret Aitken – Vascular Access Nurse, Glasgow – VASBI Nurse Lead – [email protected]
RA-BRS Patient Safety
Katy Jones – Consultant Nephrologist, Newcastle – [email protected]
Richard Fluck – National Clinical Director for Renal Disease, NHS England – Consultant Nephrologist, Derby Teaching Hospitals NHS Foundation Trust – [email protected]
Scott Oliver – Consultant Nephrologist, Glasgow – Scottish Vascular Access Appraisal Lead – [email protected]
Paul Rylance – Consultant Nephrologist, Wolverhampton – Professor, University of Birmingham – [email protected]
Maureen Graham – Patient representative – [email protected]
Yvie Morley – Paediatric Play Specialist, Manchester – [email protected]
British Renal Society Rehabilitation Network
The network officially became part of the BRS in 2011 and we are welcoming new members all the time. As a multidisciplinary group, we have representatives from many other BRS groups. We aim to support, inform and direct patients, clinicians, researchers, and health care team professionals to the appropriate information and advice in the field of renal rehabilitation. We are closely associated with the UK Kidney Research Consortium Exercise and lifestyle Clinical Study Group, and together we support clinical and research work in this field.
RELATIONSHIP WITH BRS:
We are a BRS group
Ellen Castle- Chairperson – [email protected]
Alice Smith- Membership Secretary – [email protected]
Vicky Pursey- Vice Chair for Clinical Practice – [email protected]
Pelly Koufaki- Vice Chair for Research – [email protected]
- Exercise Time Resources
- Intra-dialytic exercise training paper
- The BASES expert statement:
- Pelagia Koufaki, Sharlene Greenwood, Patricia Painter & Thomas Mercer (2015): The BASES expert statement on exercise therapy for people with chronic kidney disease, Journal of Sports Sciences, DOI:1080/02640414.2015.1017733
- To link to this article: http://dx.doi.org/10.1080/02640414.2015.1017733
- Facebook group for the British and European rehab network- see link in contact section below. This is a great forum to interact with the British and European renal exercise community.
Pelagia Koufaki – [email protected]
If you wish to join the Rehab Network please contact Alice Smith via email [email protected]
Check out our Facebook group: https://www.facebook.com/European-Association-of-Rehabilitation-in-CKD-BRS-Rehab-Network-570129016364632/
REHAB NETWORK CPD:
Free CPD event in York on the 7th September, behavioural change and physical activity for people with CKD.
Anyone interested in attending need to email the email address on the flyer.
Watch this space