The Renal Patient Support Group (RPSG) was pleased to host a Kidney Awareness event at 65 High Street Nailsea on 28th May 2019. The aim of the event was to highlight the importance of understanding Chronic Kidney Disease in primary care. The RPSG invited presentations from both healthcare and patient speakers, including Dr. Malcolm Rigler, GP who highlighted challenges surrounding Health Literacy in the Digital Age, and summarising Topal Review, 2019. Malcolm also highlighted the importance of 65 High street as being an exemplary ‘space’ where patients and professionals could come together and discuss wider topics that are pertinent in primary care.
Shahid Muhammad, Specialist Biomedical Scientist and Chartered Scientist – University of the West of England (UWE), presented some understanding of the basic laboratory investigations that are fulfilled in NHS laboratories and how ‘today’ despite advances and technology, patients can find it a challenge to ‘navigate and understand’ different test requests via primary care. Shahid summarises that laboratory parameters are used to understand disease trends, several studies have found significant disparities in health literacy and use of personal health records, there are still missed opportunities in providing educational support to CKD patients in primary care. Patients still often have various questions about laboratory investigations, health trends, results and disease management, irrespective of having access to personal health records, and information support surrounding laboratory parameters for patients in CKD requires smarter collaborations to enhance experience beyond the clinical environment. Shahid also delivered a CKD Health Literacy Workshop.
Ade Olaitan, Long-time CKD Patient and Ambassador Ujima Radio and The Rebel without a Cause (TRWAC) presented her perspective on the importance of keeping positive through CKD. Ade’s presentation also highlighted that peer education is major for CKD patients and summarised key issues and lack of Blood and Organ donation awareness in BAME communities.
Vicky Gardner, Chief administrator and co-founder to the RPSG highlighted that the RPSG is an Evidence-Based support group and defined as a ‘place’ where awareness and research meet. Patients and carers often have various questions relating to kidney care following routine clinical outpatient appointments. Owing to lack of opportunities to share real experiences with fellow peers via face-to-face communication, the intention of the RPSG was to provide an online support group as part of kidney care received at the North Bristol NHS Trust in South-West England UK. The RPSG was formally founded in (2009) by two renal patients and one carer to help raise CKD awareness on a wider scale. The RPSG has an international membership. The RPSG has been a support group for ALL who live with this long-term condition and now has over 8000 members, boasting a wide range of online activities to support patients. The RPSG provides potential to become an innovative model for shared decision-making. Vicky summarised that it is still critical that patients and carers have a ‘physical space’ to share understanding, but also where professionals and patients can integrate care.
Heather Christine, founder for Kidney Disease and Renal Support (KDARs) for Kids also attended to present her perspective on CKD in the paediatric kidney population. Heather founded KDARs owing to one of her own children being diagnosed with CKD at such an early age. KDARs has helped bridge peer support for young patients, parents and guardians, as there was nothing available with regards to help for paediatric renal patients prior to KDARS being formed. Heather and her husband, Steve formed KDARs for families with babies, toddlers and young people living with CKD issues. KDARs has over 1000 members and has been running since 2014. The lack of information available relating to paediatric kidney has been an ongoing concern and looking back, Heather and her team felt that there is only finite literature for young patients and parents that has been extremely helpful. Heather has been working hard to bring a more ‘physical space’ for KDARs in her town Grimsby, so parents and guardians can extend peer support outside of social media presence.
The RPSG and KDARs had information tables made available for delegates to take away. The RPSG and KDARs welcomed all who attended to interact to get an understanding of their wider work and efforts in supporting patients with this long-term condition.
The RPSG are hosting another event on 25th June 2019 in support of Biomedical Science Day, once again at 65 High Street. This will be another great opportunity to learn about what scientists do for patient care in the NHS ‘behind the scenes’, presentations from professionals and patients and have interactive activities on the day.
See more: Upcoming Events in Nailsea