Pharmacy can help fuel the “revolution in attitudes to organ donation” that the NHS is calling for following the first drop in postdeath donation for over a decade

Few people, when told that they or a loved one need an organ transplant, would reject the concept as a treatment option. It is also a fact that this type of undeniably complicated and time consuming surgery can now be carried out by more people in an increasing number of hospitals. So why does support for donation – measured by NHS Blood and Transplant (NHSBT) as the family consent/authorisation rate – remain stubbornly below 60 per cent?

Last year saw more than 4,400 people in the UK receive a life changing, if not life saving, organ transplant. While this is fantastic for those who benefited – which includes family and friends as well as the patients themselves – worryingly, this figure was down from 4,655 on the previous year. That’s a five per cent decrease, or 255 people. NHSBT says that part of this is down to fewer people dying in circumstances under which they could donate.

However, given that a potential increase in the consent/authorisation rate to 85 per cent would deliver almost 500 additional donations annually, it is certainly not the only factor. And here are some more figures: there are currently more than 7,000 people on the UK national waiting list, but during the last financial year, more than 1,300 names were removed, either because they became too poorly to undergo the operation or, sadly, they died before an organ became available.

While there have certainly been dramatic improvements in recent years – a 50 per cent rise in deceased donors and an upswing in transplants of more than 30 per cent in the five years to 2013 – clearly there is still work to do.

Opting in vs. opting out

Organ donation policies vary hugely around the world, with some places utilising “opt in” arrangements, and others adopting an “opt out” approach:

• The opt in system, which operates across the UK at the moment, means that people have to register to donate their organs after they die. Because this involves having to actively sign up to the scheme, it can lead to some individuals not donating even though they wanted to do so, simply because they didn’t take the necessary steps.

• The opt out system – soon to be introduced in Wales (see below) – leads to organs being automatically harvested after someone dies unless they had specifically expressed a wish for that course of action not to be followed. Those not in favour of such a system say that it can result in individuals donating their organs when they didn’t want to simply because they didn’t explicitly make their wishes clear in the prescribed way.

Suffice to say, there is no perfect scheme. But somewhere that does seem to be getting it right more of the time than most is Spain, which has the highest organ donation rate in the world. The country’s opt out approach is thought to help – although it is compulsory to obtain the permission of the family.

Much of the success is down to appointing healthcare professionals as transplant coordinators in hospitals who undergo special training so that they can talk to the families of deceased patients with sensitivity and deal with any issues that may pose barriers to donation, such as religious objections. Awareness of organ donation is also high in Spain, partly due to publicity campaigns, but also as a result of transplant coordinators also having undergone media training. So that journalists are easily able to speak to someone knowledgeable about the issues surrounding organ transplants and promote positive news stories and case studies at both local and national levels.

Such tactics could be dismissed as costly, but in fact the savings involved when someone undergoes an organ transplant can be significant. The surgery itself and immediate after care, which often takes place in high dependency units, is certainly expensive, and the antirejection drugs and regular check-ups that are required on an ongoing and long-term basis also have a price tag. But these represent a significant saving when compared to, say, the outlay of keeping someone with kidney failure on haemodialysis for years on end.

Much of the recent strategy document published by NHSBT has echoes of what has worked in Spain, notably the following statements:

• Attitudes to organ donation will change and people will be proud to donate, when and if they can
• Better support systems and processes will be in place to enable more donations and transplant operations to happen.

NHSBT states that these aims require action across the board, from individuals and society as a whole to NHS staff, commissioners, hospitals, the Government, professional bodies and the voluntary sector.

 

What can pharmacy do?

There is much that community pharmacy can do in terms of raising awareness of organ donation. By displaying posters and leaflets on the topic, pharmacy staff can encourage customers to discuss organ donation, especially with their loved ones, so that they understand the importance of expressing their wishes. Families are much more likely to agree to donation going ahead if they know it was what their loved ones wanted, whereas those who don’t know their feelings towards organ donation are more liable to say no in the emotional hours after someone they were close to has passed away.

A useful springboard for opening a conversation about what can be a tricky topic is the recently relaunched NHS Organ Donor Register. The result of a collaboration between NHSBT and all four UK Governments, the register has been rebuilt in order to offer more options to join while still maintaining a quick and easy process. Simple menus have been developed so people can register whether or not they want to donate their organs, or even nominate others to make the decision for them after their death.

The site also offers the facility to donate all organs and tissues or nominate only some. Everyone who is considered legally competent, irrespective of age or health, can join the NHS Organ Donor Register. Pharmacy teams are ideally placed to help increase the number of people from black, Asian and minority ethnic communities who are on the register.

In 2013, people from these groups represented 27 per cent of those on the transplant waiting list, but comprised only five per cent of donors. Because of the close matching that needs to take place in order to reduce the level of graft organ rejection, this disparity means that black, Asian and minority ethnic individuals requiring a donor kidney wait an average of one year longer for a suitable organ.

Some customers, particularly those with relatives who require a new kidney, may ask about donating one of their own organs. Advances in recent years – and a change to the law that previously limited living donation to direct exchanges between family members and friends – have led to one in three transplants taking place because of living donors, the vast majority of which involve kidneys. There has also been a rise in altruistic shared donations, which allows pooling of organs from willing donors, and may trigger more than one transplant.

 

More information

• NHSBT’s strategy document – Taking Organ Transplantation to 2020
• More information on how to get involved in raising awareness of organ donation, including a link to order free posters and leaflets, can be viewed here
• Organ donation in Wales
• Organ donation and religious beliefs.

Last year saw more than 4,400 people in the UK receive a life changing, if not life saving, organ transplant