June News
Welcome to our June newsletter.
This month, we are focusing on Patient Partnership and Engagement (PPE) and Peer support in the LKN.
We meet Sarah, LKN PPE Lead, and Den, KCUK Peer Support and Volunteering Manager for London. We hear from several patients who are involved in LKN work about why they think patient involvement is so important, and how we can work together to create the best outcomes for kidney patients in London.
Meet the Team
This month, we meet Sarah-Louise Harwood, Patient Partnership and Engagement Lead.
Sarah-Louise Harwood
Patient Partnership and Engagement Lead
London Kidney Network
Tell us a bit about yourself I’m Sarah and I am from south west London. I crash landed into kidney failure aged 18 and was diagnosed with Goodpastures (anti-GBM) syndrome and ANCA vasculitis. I was lucky enough to receive a kidney from the donor list when I was 19 and that has been keeping me going so far! I am extremely passionate about the power of the patient voice and despite the trauma of living with kidney disease, it has also allowed me to be part of an incredible community of people.
What’s your role in the LKN? I am the Patient Partnership and Engagement Lead.
Why is patient involvement important to you? There are so many reasons why patient involvement is important. It’s proven that it improves health outcomes, helps better service delivery and makes research more relevant and successful. For me its greatest importance lies in the impact it has on the individuals involved. Empowering people to understand the importance of their voice, and turn often very traumatic moments in their lives into something positive to help others is boundless.
Patient involvement in the LKN
There have been a number of opportunities for kidney patients to get involved with the LKN work, such as joining and contributing to meetings, taking part in a focus groups and responding to surveys. A number of patients have committed their time on a more regular basis to contribute their experience, insights and expertise as patient representatives in LKN workstreams.LKN patient workstream representatives, trust and kidney patient charity representatives meet regularly to share their experiences with each other and discuss patient engagement opportunities, LKN initiatives, and projects.
Jonathan Bartley (LKN patient representative for Health Equity) describes why he got involved with the LKN:
“As a Renal patient I appreciate the opportunity to feed into the London Kidney Network and it’s various workstreams by presenting my own experiences as a patient, having undergoing dialysis and transplantation, and post-transplant care. I feel that being a patient representative helps to present the human face behind the patient, and ultimately to inform and encourage renal treatment pathways in a more person centred and wholistic way.
In my work as a Patient Support and Advocacy Officer for Kidney Care UK, I often wear different hats in my contribution as a Patient Representative to the LKN. I enjoy the opportunity to work in and advise the Health Equity Group, and bring to life the realities of life as a kidney patient, and the extra barriers that kidney patients face socio-economically. I’m passionate about representing and fighting for those kidney patients who are most deprived and marginalised in our society, and to make sure their experiences and voices are heard.”
The Patient Experience Group
To increase patient involvement in the LKN, a patient engagement event was held online last November to describe and recruit patients to a new initiative developed by Andrew McAllister (LKN patient representative for CKD Prevention) and Wendy Brown (Multi-Professional Clinical Lead) of holding regular discussion meetings. Starting in January 2024, a monthly patient experience group (PEG) meeting is held online where patients come and discuss their experience on specific topics with LKN clinicians. Patients join when the topic is of interest or relevant to them.
Andrew describes the aim of the PEG meetings as:
“…providing a space for rational, meaningful discussions and feedback from patients about their experiences as kidney patients and how patients and clinicians can work together to help improve the processes and practices within the NHS. Having had feedback from a consultant that day-to-day there isn’t always time for patient experiences to be shared, I feel that from the PEG group patients can make a real difference in helping to shape what good practice looks like. By having more patients involved hopefully we can understand the bigger picture of kidney care, can reflect on ourselves too, and feel a sense of responsibility in helping other patients to have improved care.
Given how much we all care about the NHS, then hopefully the outcome is that we can work more collaboratively as clinicians and patients for common goals.”
We are keen for more patients to get involved in these monthly discussion groups, to learn about a variety of experiences from representatives of our London kidney patient population.
Why get involved?
Brian Gracey (Chair of The London Hospital kidney patient forum) says his interest for joining was to hear what is going on in other renal centres across London, to understand the variations and the sharing experiences of good practice is invaluable. Sharing the not so good experiences and the gaps in service provision also helps informs the work of the LKN to bring about change that is relevant to patients.
Future Plans
Patients have always been a key partner in the LKN and we are looking to expand and embed this even further. The patient voice has to be central to everything we do and we need to understand the reality of the lived experience of people with kidney disease across London. So how are we going to make this happen?
We will increase engagement with patients across London and build on the success of the Patient Experience Group. By reaching out to patients in different ways and working in partnership with charities and community organisations, we want to increase representation and diversity and find unheard voices. In getting more patients involved with the network, we will facilitate more opportunities for people to be involved in different ways that suit them, creating more inclusivity.
Anyone with lived experience of kidney disease can join the Patient Experience Group and get regular updates on ways they can be involved and share their experiences. To find out more email: [email protected]
Welcome Deniz
Deniz Hasan
Peer Support and Volunteering Manager
Tell us a bit about yourself My name’s Deniz (Den for short) and I have been the Peer Support and Volunteering manager since March 2024. I have been in the volunteering services world (NHS and charity) since 2016 and I have experience of working as an administrator, coordinator and manager of volunteers including the team of staff in voluntary services.
What’s your role in the LKN? My role is to look after the end-to-end process of Peer Support across the 7 renal trusts in London
championing our service. A huge need for peer support has been showcased and my role is to manage the outreach, management of volunteers, training and onboarding process of keeping Peer Support a success and a very needed service for all effected by chronic kidney disease.
This is an evolving and growing service and each Trust involved has a peer support champion to support the programme locally. To find out more information please contact Den [email protected]
Peer Support
Nobody understands what people with chronic kidney disease are going through as well as those who have gone through the experience themselves.
Peer support has been established as an important tool in improving outcomes for patients. The opportunity to speak with someone else who’s been through what you are facing is a source of information, comfort and hope. Particularly when patients are embarking on a new treatment, speaking to someone who shares tips about what they take from home to make their dialysis more comfortable, for example, or things they do to protect their fistula, really helps. Peer support gives short term practical, emotional and social support to people with chronic kidney disease, their families or carers based on common experiences.
However, peer support needs to be structured and supported to be effective. Volunteers need guidance to ensure the information they share is appropriate and correct. A successful match must be considered and arranged, and support needs to be available when things don’t go to plan.
Establishing an effective peer support service takes a lot of effort, which is where Eleri and Deniz can help.
Eleri Wood, Kidney Nurse Consultant at King’s, leads the field in researching and promoting peer support for renal patients. With the LKN, she has been working with Peer Support Champions from each of the seven renal units across London to share resources and learn from each other. As a result, with support from Kidney Care UK and the LKN, peer support is available to renal patients across London.
Deniz Hasan (Peer Support and Volunteering Manager) started work in March. Her role is to administer the peer support service for London and is jointly funded by Kidney Care UK and the LKN.
Deniz brings experience in peer support and volunteer management for cancer patients and has spent the first couple of months building connections with Peer Support Champions and volunteering teams across the NHS Trusts. Building on the work to already in place, Deniz is centralising the administration of peer support; delivering the outreach, recruitment, training and onboarding process to manage volunteers and ensure a ready supply of trained and supported volunteers to match with requests from patients for someone to talk to.
From July, Deniz will stewarding volunteers from across all seven renal units and accepting requests for matches. Deniz will arrange for volunteers to contact their match by phone or in person, to listen and offer information and personal experience to help patients make more informed choices. Deniz says,
“Although we’ll try and match people to a volunteer within their unit, sometimes it might be more important for them to speak to someone in similar circumstances. Being able to call on volunteers from across London, it’s easier to match people with shared backgrounds, language and circumstances.”
The partnership between the LKN and Kidney Care UK establishes an exciting new model for peer support that could ultimately make this invaluable resource available to renal patients across the UK.