Kidney Cross Party Group

The  Kidney Cross Party Gorup (CPG), campaigns for equitable access to services for all affected by kidney disease in Wales and to develop new initiatives and services where there is an unmet need. We bring together those affected by kidney disease, members of the Senedd, Health Care Professionals and Charities interested in Kidney Disease to:

·         Increase awareness of kidney disease, screening, and early identification.

·         Review and develop the Patient pathway to support early diagnosis and the right treatment choice at the right time.

·         Make service improvements. Understand the ever-changing political landscape required to achieve and sustain the above.

 

Year To Date Report on CPG Activity

The inaugural meeting took place on the 21st June 2024, where the Kidney Cross Party Group was established and the Chair and Secretariat voted in. Mike Hedges, MS Swansea East, Chair and Joanne Popham, CEO, Popham Kidney Support, Secretariat. There have been there meetings since then.

 

Meeting 1 – 29th November 2024

The agenda for meeting 1 highlighted why Peer support should be part of the patient pathway for newly diagnosed people with kidney disease in Wales. Kidney Research UK, Dr Bahari, presented, their Peer Educator-based community project for pre-dialysis patients. PKS, Jo Popham presented How is Peer Support is Delivered in Wales. Two people who received Peer Support through Popham Kidney Support shared their Patient Experience, how would Peer Support have helped them at the start of their journey and now Kevin Carsley & Craig Brocklebank. Popham Kidney Support then outlined their 5 Year Goals with the support of The National Lottery Funding and other funders.

 

Actions from meeting 1:

·         Welsh Kidney Network as acommissioning body want to hear more about the Peer Support Steering Group, how it would/could be developed to inform more of commissioning decisions going forward.

·         The evidence of the efficacy of peer support was clear and wished to be clear that Welsh Kidney Network would be happy to help with any business case in order to secure further funding.

·         Next steps for Peer Support Steering Group, are to create a reporting mechanism that produced statistics, information, and case studies from the Peer Support Service to go forward to inform the relevant bodies, e.g., NHS Wales, Welsh Kidney Network of the importance of Peer Support and ensure that the service is maintained and strengthened for future patients. Develop the Peer Support Steering Group to report developments to the relevant bodies

·         Currently the service operates within secondary care, expressed the hope that it could be introduced at primary care. Build links and develop collaborative work with Primary Care

 

Meeting 2 – 31st January 2025

The Agenda highlighted the inconsistency in housing solutions for home dialysis patients throughout Wales, the disparity of kidney disease compared to other life limiting diseases

and the support requested from the Welsh Government. Presentation about the Housing Challenges for Home Therapies in South East Wales from Laura McGuinness, Renal Social Worker, NHS Wales. The second presentation was about the Anglesey Home Dialysis Social Housing Pathway from

Llinos Williams, Community Housing Service Manager, Anglesey County Council and Sarah Hirst-Williams, Renal Matron, Betsi Cadwaladr UHB

 

Actions from meeting 2:

·         Secretariat wrote to and Met with Rowan Cadbury, there is work being done to support this initiative within the Senedd. Next steps for a letter to be written to the housing minister and 22 local authorities.

·         A co-ordinated approach was needed, reiterating the point that kidney patients needed to be treated appropriately, not differently. The Chair will write to all Senedd members, the Health Minister and the housing minister, and also to all 22 local authorities to ask for their policies. The.

 

Meeting 3 – 14th March 2025

The Agenda was about World Kidney Day 2025: "Are your kidneys ok? Detect early, protect kidney health" Dr Alexa Wonnacott, Consultant Nephrologist presented on The impact of CKD in Wales. Alan Jones, presented on Living with CKD- the patient experience. - Dr Alexa Wonnacott, Consultant Nephrologist and Honorary Senior Lecturer second presentation was around the  Strategy and actions to improve kidney health in Wales. Fiona Loud, Policy Director, Kidney Care UK, presented on the #BloodyAmazingKidneys campaign,

 

Actions from meeting 3:

Chair to write to Welsh Government to include Kidney Disease in all communications relating to Critical and Life Long Illnesses.

 

Next Meetings

·         AGM – date TBC

·         Joint meeting with Medical Research CPG on VPAG – July 25

 

To find out more information and to join the group:

Write to: Joanne Popham, Secretariat, AWCPGKD or Mike Hedges MS, Chair AWCPGKD

All contact information visit: https://pophamkidneysupport.org.uk/contact-us/

Or Visit: Cross Party Group – Kidneys – Cross-party Group (senedd.wales)