British Kidney Patient Association -BKPA News

BKPA News

BKPA helps expand National Kidney Federation Advocacy Service

The BKPA is financing the expansion of the National Kidney Federation’s (NKF) Advocacy service – a service which represents patient interests locally, regionally and nationally.

The BKPA is providing the funding for one full-time and four part-time Advocacy Officers. Their roles involve:

speaking up for patients
empowering patients to make sure their rights are respected and their views heard at all times
assisting patient’s carers and families with self-advocacy and helping them to navigate the system
representing the views, wishes and needs of patients to decision makers at all levels

“An expanded NKF/BKPA Advocacy service will certainly give more patients access to this valuable support service. Helping kidney patients find the necessary information to work their way round the health system and supporting them during times of need is vital to well-being and quality of life,” says Rosemary Macri CEO of BKPA.

The NKF/BKPA Advocacy Service can be contacted through the National Kidney Patients Helpline Tel 0845 601 02 09 (cost of a local call).

This is a personal service and patient issues are handled in a sensitive and compassionate manner in the strictest confidence.

Young adults gain support for residential activity weekend

The British Kidney Patient Association (BKPA) is funding an exciting new residential project for young adults aged 18-25 who are living with kidney disease.

Planned by key workers and colleagues from the five groups working as part of the NHS Kidney Care’s national project to support young adults with kidney disease, this initiative will bring together around 40 young adults from across England. They will have the opportunity to take part in a variety of activities, including team building games, organised outdoor activities, workshops and discussion groups.

The aim of the weekend away is to provide an opportunity for young adults living with kidney disease to meet one another and to develop peer support networks, discuss their challenges and work towards finding solutions. The workshops will cover issues pertinent to young adults - for example transition issues, employment, diet and relationships. The weekend will take place in February 2012 in the beautiful surroundings of the Peak District.

The grant from the BKPA for this project is £8,849. Rosemary Macri, CEO of the BKPA says, “This is just the kind of inspiring new project that the BKPA likes to support as it is all about helping to improve quality of life for an important group of kidney patients. If other adult or paediatric units have innovative projects that they would like to take forwards, but are perhaps restrained by lack of NHS funds, it is worth approaching the BKPA for a grant.”

For more information about the residential project please contact Matt Tomlin, Young Adult Worker for the East Midlands Project on This e-mail address is being protected from spambots. You need JavaScript enabled to view it '; document.write( '' ); document.write( addy_text55572 ); document.write( '<\/a>' ); //--> This e-mail address is being protected from spambots. You need JavaScript enabled to view it

BKPA grant to fund new children’s information leaflets

The Royal College of Paediatrics and Child Health (RCPCH), British Association of Paediatric Nephrology (BAPN) and BKPA are working in partnership to produce a new and comprehensive set of information leaflets for children with kidney disease.

Sound advice and expert opinions are being sought from across the renal community together with input from all 13 paediatric nephrology units, as well as from young people, parents and their carers to make sure that the leaflets will have national appeal.

Rosemary Macri, CEO of the BKPA says, “We’re so pleased to be involved with this exciting project and who better to work with than these two partners who are experts in providing support and information to children. The BKPA is such a valuable source of information for many patients and we know from the feedback we get that there is a need for new materials for children and their carers.”

Work has now begun on planning the topics and lining up stakeholders to review and give input into the leaflets. They will be due for completion in 2013.

If you’re a young kidney patient or you’re a parent or carer of a young child or teenager with kidney disease and you have views on what’s missing from the current literature, please let us know at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

BKPA sets up new support phone line

The BKPA is now employing a renal counsellor/support worker who is available at the end of a phone line everyTuesday. Jacquie Fraser, a highly experienced counsellor will give support and guidance to kidney patients from the BKPA offices.

Whether worried about dialysis options, transplantation or managing everyday life, Jacquie is ready to listen andoffer help to those people who have no counselling services in their local kidney unit.

Whilst not a social worker, in her capacity as a support worker, she’ll also be able to guide patients with theirindividual applications for grants from the BKPA, when there’s no renal social worker in the local kidney unit.

Rosemary Macri, CEO, says, “We receive so many calls from patients needing that extra bit of support and guidance, particularly as many units are unable to employ counsellors or social workers. We’re really pleased to have Jacquie on board as she has a wealth of experience and will offer a really valuable service.”

Jacquie’s experience includes the setting up of renal counselling and information services at both Charing Cross Hospital and Hammersmith Hospitals, setting up the national Renal Psychological Services Group for counsellors and therapists, and speaking at many national and international meetings about her initiatives.

In 2002 Jacquie received the King’s Fund Award for her “contribution to well-being for renal patients and their families in London.” Jacquie now works part-time. She still sits on many national renal committees and is trained as an Independent Assessor for the Human Tissue Authority.

Call 01420 541424 and ask to speak to Jacquie or email her at This e-mail address is being protected from spambots. You need JavaScript enabled to view it

Award for Lifetime Achievement for BKPA Trustee

BKPA Trustee Marcelle de Sousa has been awarded the Chief Nursing Officers’ Award for Lifetime Achievement, at the annual Nursing Times awards.

Marcelle, who retired in 2008 after more than 30 years of nursing is widely respected for the new developments that she has led in children’s renal nursing and adolescent healthcare.

She is described in Nursing Times as someone with endless energy and infectious enthusiasm. An inspirational nurse and role model to so many staff, she has touched the lives of children and families, supporting them through illness, recovery and death. She received an MBE for her services to children and young people in 2009-10.

The judges said, “Marcelle is a role model for children’s nurses and she has worked tirelessly to promote the children’s agenda and profession worldwide. She remains working hard in practice to promote her specialism and the wider profession.”

Marcelle became a Trustee of the BKPA in 2010 and is keen to work with the charity on highlighting the impact of renal disease on children and their families.

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