Renal – Know your Lab Test Event

The Renal Patient Support Group (RPSG)

The University of the West of England (UWE) – 25th June 2019

In following a successful event on 28th May 2019, The Renal Patient Support Group (RPSG) was pleased to host its second Kidney Disease Awareness event at 65 High Street Nailsea on 25th June 2019. The aim of the event this time was to highlight Chronic Kidney Disease (CKD) and Know your Lab Tests. The event was also held in support of Biomedical Science Day 2019. The RPSG invited presentations from both healthcare and patient speakers, including Trainee Clinical Scientist, Ellen Bealing, Severn Pathology North Bristol NHS Trust, Shahid Muhammad Chartered Scientist – University of the West of England (UWE), Long-time Renal Patient, Damindra Gunatillake, and RPSG Chief administrator, John Gardner. Ian Morrell, 65 High Street Proprietor also provided a presentation on the work behind the ‘space’ on the High Street.

Ian Morrell started the event highlighting how ‘spaces’ like 65 High Street are important and that they are ‘spaces’ where people from all walks of life are welcome to come in and learn about different aspects relating to health and social care. Ian provides an insight into some of the collaborative projects that 65 High Street has been involved in. All of which have allowed more community engagement and awareness on various areas including dementia, diabetes, NHS Digital, Cancer and Youth Club work.

The RPSG invited Ellen Bealing, Clinical Trainee Scientist from Severn Pathology, the North Bristol NHS Trust. Ellen highlighted the work of clinical scientists, (clinical biochemists), the different laboratory investigations and laboratory practice behind the sciences in healthcare. The work behind frontline clinical practice has been important for many years. Lab tests, investigations and results help clinical teams inform patient care and very important decisions. Ellen highlighted how kidney laboratory tests are critical in supporting best practice.

Once again, Shahid Muhammad, Specialist Biomedical Scientist and Chartered Scientist – University of the West of England (UWE) was invited to highlight insight relating to Educational Science on a Long-Term Condition (LTC) – Laboratory Parameters Support and Translating Best Practice for CKD Patients. Shahid highlighted some initial poll data surrounding healthcare professional and patient collaborative partnership working to see that patients with CKD get the best out of their kidney care, where primary care is concerned. Shahid also highlighted how 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.

The RPSG Damindra Gunatillake, long-time renal patient was invited to provide his perspective on the importance of peer support, family, friends and his experience of healthcare. Damindra highlighted how the RPSG has been a great initiative allowing a platform for patients and carers to come together and share CKD experiences across the globe. He mentions that his NHS Trust have a well-connected team of health professionals, and their (alongside his family and friends’ efforts) has helped him preserve through CKD over the years.

In following Shahid’s CKD Health Literacy Workshop, the event also invited delegates open interactive session talking about laboratory parameters and healthcare science.

John 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.  John 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. Whilst the RPSG has grown in both membership an across several social media platforms, John 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.

The RPSG invited delegates to look at some of the work the RPSG has been doing to raise CKD awareness through evidence-based publications to take away. The RPSG welcomed all who attended to interact to get an understanding of their wider work and efforts in supporting patients with this long-term condition. All delegates were provided certificates of attendance and the RPSG received positive feedback and hope to host more interactive sessions at 65 High Street in future.