Plus Council a voice for kidney patients in Wales

The People Like Us Campaign was launched in September 2007 to coincide with the Kidney Wales Foundation’s 40th anniversary.  The purpose of the campaign was to:

•    Strengthen and unify the voice of thousands with kidney disease;

•    Provide a platform for patients and carer families to ensure messages get through to the elected members of the Welsh Assembly  and government agencies;

•    Present an accurate and compelling picture for the general public by showing the true human faces of those suffering with kidney disease in Wales.

The campaign concluded with a Patient Conference in January 2008.

From this came the idea for the Plus Council, a forum where patients and health care professionals could meet in a non clinical environment to discuss all issues surrounding kidney disease and transplantation.

The purpose of the Council was:

•    Gather together people from all areas of Renal health care with patient representatives from all forms of dialysis, transplant recipients / donors and carers.

•    To enable people to communicate in an open forum without the confines of a clinical environment.

•    To pass on ideas and information of the current situation to the Cross Party Kidney Group and Renal Networks in Wales.

The Kidney Wales Foundation working with patient groups is leading the way in championing the implementation of the opt-out system in Wales. Wales would lead the way in the UK if this system was introduced and more lives waiting for transplant would be saved.

Register your support for the campaign by downloading the forms below and send to Kidney Wales. We will forward them to the Minister of Health Edwina Hart AM.

Letter - Consultation Document DOWNLOAD NOW

Opt-out: THE FACTS

•    Opt-out is a system of organ donation whereby every person living in the country is placed upon a register to donate their organs when they die.

•    Opt-out does not take away the right of the individual to decide whether they wish to donate or not. If a person does not want to donate their organs for transplant then they have the right to automatically take themselves off the Register.

•    Opt-out does not mean hospitals will take organs from those who do not wish to donate. The family of the person still has a say. If a person has not taken themselves off the Register, but their family say they knew their loved one did not want to donate then the donation will not take place. Likewise when it is not possible to attain what a person’s wishes were i.e. they have no family to consult, then again the donation will not take place. Only those that do want to donate under an Opt-out system do so.

•    Opt-out has been hugely successful in other countries. When Belgium introduced the opt-out system in 1986 its national rate of organ donation rose by 55% within five years. Belgians can take themselves off the Register at their local town hall, but only 2% have done so since the law was introduced. In Spain, where a similar system of opt-out exists, there are 35 donors per million population compared to just 12 in the UK (see table below). It is the only country to witness a year-on-year increase in organ donation for the last ten years.

•    Kidney Wales, along with the BMA, supports the introduction of a soft opt-out system in Wales as has already been adopted in the majority of other European countries i.e. Spain. It is this, alongside the introduction of more donor co-ordinators, which will lead to more lives being saved through the gift of organ donation.

Deceased organ donor rates in Wales

The number of organ donors in Wales has remained at a plateau for the last decade and in fact, in the last year, has decreased highlighting the desperate shortage of donors.

  * HB – heart beating donor NHB – non-heart beating donor

•    2002-2003 – 33HB               0NHB         total: 33

•    2003-2004 – 44HB               0NHB          total: 44

•    2004-2005 – 46HB               1NHB          total: 47

•    2005-2006 – 35HB               7NHB         total: 42

•    2006-2007 – 42HB               9NHB          total: 51

•    2007-2008 – 39HB               6NHB          total: 45

Heartbeating donor – A person who has died and donated whilst a ventilator provides oxygen, which keeps the heart beating and blood circulating after death. Organs such as hearts, which deteriorate very quickly without an oxygen supply, are usually only donated by a heartbeating donor.

Non-heartbeating donor – A person that has died in a hospital, but is not on a ventilator.

Brain Stem Death – The phrase used to describe the establishment of death following irreversible destruction of the brain stem.

Deceased donor – A person who has donated their organs after death.

Around two in three kidney transplants come from deceased (also known as cadaveric) donors.