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The Renal Association Patient Council

Chairperson(s):
Fiona Loud, Representative, Kidney Care UK, fiona.loud@kidneycareuk.org

Current Members:
Hakeem Adedoja, Patient Representative
Claire Corps, Patient Representative
Ron Cullen, Chief Executive, The Renal Association
Katharine Evans, Research Development Manager, The Renal Association
Jack Husband, Patient Representative
Ewan MacLean, Scottish Patient Representative
James Medcalf, Medical Director, UK Renal Registry
Guy Richards, Patient Representative
Sue Lyon, Patient Representative
Tracey Rose, Patient Representative
Keith Bucknall, Patient Representative

If you are a kidney patient, a family member or carer of someone with kidney disease, we’d like you to think about joining The Renal Association’s Patient Council.

The RA Patient Council helps to connect us (the RA) and the work we are doing with people whose lives are directly affected by kidney disease. Your current experiences, views and opinions on kidney services can influence services now and in the future as we work with the renal centres, researchers and many others.

The Inaugural Patient Council Meeting
The Inaugural Patient Council Meeting

The Patient Council is a formal group of kidney patients, carers and relatives, which gives voice to people living with kidney disease. It has been going since 2014.

The RA is keen for patient care to be at the heart of everything it does. The Patient Council makes sure this happens by supporting the work of the RA and getting involved in many different ways.

If you would like to have an impact on kidney care and speak for yourself and others, we would like to hear from you. We need new members to join us.

The Patient Council meets quarterly and at the meetings we do a variety of things.
Our role includes:

  • Getting involved in new programmes of work that aim to improve the experience and outcomes for patients.
  • Helping to produce new patient information – leaflets, reports and posters.
  • Supporting the RA on issues relating to information governance – how data is managed and used, and patient consent.
  • Discussing new research and survey proposals and how the data from the kidney centres is being used.
  • Using the opportunity to encourage discussion between patients and clinicians to promote patient involvement in kidney centres as well as regionally and nationally.

 

Why join the Patient Council?

The Patient Council is an important platform and can influence patient experience, important issues such as how patient data is used, and research and improvement activities. Being involved in developing and improving the depth and quality of relationships and conversations between patients and clinicians and policy makers is very important.

Being a member will give you

  • Personal development: members will be offered opportunities to develop knowledge and skills in areas relating to the Council’s role and activities
  • Personal satisfaction by making a much valued contribution to the work of the RA and making sure that patient care is at the heart of everything that the RA does

     
    If you are willing to commit some time to work effectively within a team, we would like to hear from you. Click on the Patient Council Information Leaflet below for full details.

    Click here to watch a short video about the work that the UK Renal Registry does.

    For further information regarding membership of this study group please email jennifer.barwell@renalregistry.nhs.uk

    Members will meet quarterly, physically or virtually with ad hoc tasks and groups between meetings to enable work to be completed. Meetings will usually take place in Birmingham. Reasonable expenses will be covered by the RA, with prior agreement.

     

    The Registry and its Patient Council would like to acknowledge the contribution our late member Denny Abbott made. She was a founder member of the Council and a great believer in the power of data for improvement in patient care. She gave freely of her time and expertise as a patient, despite her health challenges and we miss her and thank her for all her authoritative, consistent contributions to the group from the start.

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