Liver Patients' Transplant Consortium
Co-Chairs: John Crookenden, ALTA and Alison Taylor (Children's Liver Disease Foundation)
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The Liver Patients' Transplant Consortium (LPTC) is a partnership of the UK's liver patient support groups and charities, working together on transplant issues important to patients and their families. LPTC is working closely with NHS Blood and Transplant (NHSBT) to ensure that the patients' perspective is heard and considered.
The role of the LPTC is to:
- promote and support the involvement of the public and patients in the provision and delivery of liver transplant services and organ allocation;
- obtain the views of patients, carers and their families in relation to their needs for, and their experiences of, liver transplant services and organ allocation;
- make reports and recommendations about how liver transplant services and organ allocation could or ought to be improved, to persons responsible for commissioning, providing, managing or scrutinising such services, and to NHS Blood and Transplant (NHSBT).
Together, the LPTC will:
- promote the values of public and patient involvement in decisions affecting the commissioning and delivery of liver transplant services, organ allocation and related services.
- respect the confidentiality of individuals.
- evaluate the impact of involvement.
In order to achieve this, we will:
- conduct the highest standards of public and patient involvement.
- provide support to help facilitate the sharing of best practice involvement amongst the partners.
champion the use of patient experience and public voice in the commissioning, governance and evaluation of services.
The LPTC elected Martine Walmsley (PSC patient) as Chair and John Crookenden (liver transplant recipient) as Deputy Chair in October 2013.
PSC Support is a founding member and active contributor to the LPTC. Martine Walmsley, PSC Support’s Chair of Trustees comments, "At a time when policy surrounding the allocation of organs to patients on the Liver Transplant Waiting List is under review, it is vital that as broad a set of patient voices as possible is heard as part of that review. Primary Sclerosing Cholangitis (PSC) is a rare disease of the bile ducts and, like many other liver diseases, it can lead to liver failure. With no current cure for PSC, transplantation is often the only option available to PSC patients who progress to end stage liver disease, so we recognise the value and need to shape policy, and promote and drive organ donation. There are many UK liver support groups and charities from all parts of the community, and by working together constructively as the LPTC, we are making our collective voices heard, and views understood to help shape liver transplantation policy change."
In June 2015, the position of Chair was expanded to become a Co-Chair position, with Andrew Langford and Alison Taylor taking on the roles.
In 2017, Andrew Langford left the British Liver Trust and John Crookenden continued as Co-Chair with Alison Taylor.