Aviva Community Fund has provided £1,507 of match funding
York Hospital Kidney Patient Peer Support Network
York, England, United Kingdom
Aim
To help develop and grow a network of patients/carers suffering from Chronic Kidney Disease to help others, through their lived experiences.
Kidney Patient Peer Support
Thank you for finding our project application page! Please read on and view the video’s to find out how your contribution will make a tremendous difference to the lives of people affected by life-limiting disease in Easingwold, Harrogate, Scarborough, York and surrounding areas.
VISION
The vision of this project is to help empower patients, carers and family members to help each other through various stages of their/our lived experience(s) to help provide Information, Advice, Guidance and Support to each other.
Life after a diagnosis of chronic kidney disease will never be the same for individuals and those around them. Being able to reach out to others who have direct relevant experience echoing their own, provides these individuals with a way to find reassurance, comfort and invaluable, real-life, practical support; by connecting with committed patients and caregivers trained to support. One of the key messages of Peer Support is “you are not alone in this.”
This project invites your financial support towards our Kidney Patient Peer Support network, which equates in many ways to coaching, mentoring etc.
Peer Support is a relationship in which people see each other as equal partners and where the focus is on mutual learning and growth. Peer Support has been shown to effectively help transform and alleviate feelings of insecurity, helplessness and fear and to offer a way forward at a time when an individual (and carer) is ready for answers to their questions; which supports work being conducted by health care professionals.
Our Kidney Patient Peer Supporters are people with similar health conditions, and/or from similar communities or backgrounds, including people with shared identities based on their sexuality, gender, ethnicity or other characteristics.
At the heart of peer support is a hope and a belief that through sharing and support we can transform our lives and our communities for the better. Because Peer Support is a two-way reciprocal relationship, it benefits both those providing and receiving the support. Benefits can include creating collective strategies to maintain health, building resilience and self-esteem and aiding advocacy and collective action, perhaps improving quality of life.
An example of Kidney Patient Peer Support; perhaps 'An aspiration'
Meet Andy (Kidney Patient) - A personal perspective:
My name is Andy and I have had Chronic Kidney Disease (CKD) for some 17 years. Through this period I have had a brief period of pre-treatment followed by 4 years on Haemodialysis and am now thankfully into my 12th year of a kidney transplant. CKD is known as a long-term condition and irrespective of what treatment you elect it is treatment for life. You need to learn to live with it and this can be extremely challenging.
Chronic Kidney Disease
Different Kidney Failure Treatments
Most treatments for chronic kidney disease have a massive impact on our lives these include:
In-Centre Haemodialysis (HD): A form of dialysis that filters your blood using a machine and a synthetic membrane – called a dialyser – performed at a hospital or dialysis clinic, for minimum of 4 hours at a time (plus travel), 3 times a week, at a scheduled time, by a nurse or clinician.
Home Haemodialysis (HHD): A form of dialysis that filters your blood using a machine and a synthetic membrane – called a dialyser – and can be performed in your own home. Similar timings to HD
Peritoneal Dialysis at Home (PD): A form of dialysis that uses the lining of your abdomen, the peritoneal membrane, to clean your blood inside your own body, and can be performed at home.
Other Treatment Options: A kidney transplant may be a treatment option for some patients, while supportive (conservative) care without dialysis might be suitable for others.
For more information on each please watch the video below.
So what .......
The diagnosis of CKD is the start of a lifetime journey where patient and carer experiences grow or what becomes known as 'Lived Experience' (not meant as an advert as there are other suitable providers). This is the area that this project is wishing to explore and develop.
'An example of a patient experience of lived experience'
In addition, empowered patients and carers are more inclined to be involved in other NHS/Hospital Quality Improvement, Research, and Service Development and potentially help to improve the quality of life of CKD patients and carers and those working in kidney care services.
Our Peer Support Network Journey (so far) ...
Understanding the importance and value of engaged patients and carers, both myself and my kidney consultant (later assisted by a kidney nurse), with the help of Kidney Care UK (KCUK) started to create the York Kidney Patient Peer Support Network through a patient, carer and healthcare professional partnership in 2020/21. In spite of Covid, we have managed to start the beginning of a network which has taken roots and have plans to grow locally and nationally.
Out of interest, if you type in patient ‘Peer Support’ into Google you get some 8 million results although many of these articles are from early 2000’s. As a patient I have to question why this brilliant resource is not in mainstream chronic kidney disease practices.
Locally in North Yorkshire and nationally, we are keen to continue develop and support a patient led network to support patients and carers who are themselves going through difficult journeys in diabetes-kidney & heart failure-kidney clinics. Using the principles developed in our initial program (in line with other programmes), we would like to support & promote self-care through shared responsibility.
We are now starting to build a collective patient voice regarding ‘Lived Experience’, where our experience(s) of kidney disease and its treatments positively influences decision making through the co-production of information, advice, guidance and training in order to help improve the quality of life of fellow patients and carers through better informed experience and overall care services. As a new local network, we continue learn from good practice that is already happening across the UK and within international Health Services.
We are starting to create a structure which enables other patients to join in producing a stable, diverse and sustainable network with collective expertise. Efforts continue to be made to sustain and spread co-produced activities developed within this network. We continue to believe that it is when an improvement has become integrated into the mainstream way of working that spread and sustainability can start; and that it should withstand challenge and variation over time, through a process of continuous improvement.
In addition to what we are trying to achieve, there is potential to link with other national Peer Support Networks (kidney and long term conditions) to be able to share ideas, processes, successes, and failures etc. In addition, as the Kidney Patient Involvement Network (KPIN) develops there are numerous links to be made re the development of patient and carer involvement.
We continue to develop a structured Peer Support training programme delivered by ‘expert’ patients and health care professionals, in either one-to-one or in group settings. Trained peer supporters can model positive and healthy behaviour and signpost to services and appropriate information. The focus is on strengths and abilities, motivating and working to achieve agreed goals and improve or maintain quality of life.
Using quality improvement methodology, we have developed rigorous processes and outcome measures which we understand we need to conduct to help sustain this network. We are keen to do this to establish Peer Support into routine practice understanding that patient peer support adds value to the kidney multi-disciplinary team in serving kidney patients and carers.
This project successfully funded on 7th December 2021