Encourage patients to join donor register

GPs have a major role to play in promoting organ donation, says Mr Chris Rudge

KEY POINTS
  • The UK has one of the lowest organ donor rates in western Europe.
  • Hundreds of patients waiting for a liver, heart or lung transplant die each year because of organ shortage.
  • The NHS organ donor register currently holds 13.5 million names.
  • Every kidney transplant is likely to save the NHS approximately £130,000 over the lifetime of the transplant.
  • Ninety per cent of the public are, in principle, in favour of organ donation after death.
  • GPs are in an ideal position to encourage the general public to register their wishes.
  • Automatic electronic organ donor registrations transmission to the system is currently not available to GP surgeries.

Organ transplants have been performed in ever-increasing numbers for over 50 years. Up until the late 1980s, the likely outcome was variable. Some patients did spectacularly well but many either rejected the transplant or suffered over-immunosuppression.

Infections were common and often life-threatening, and barely half of the patients had anything approaching a successful transplant.

The situation is very different today. While still not perfect, the results of transplantation have improved beyond all recognition, largely as a result of a number of extremely effective and relatively safe drugs.

More than nine out of 10 kidney transplant patients now have a positive outcome in the short to medium term. Long-term results are improving, and the results for liver, heart, lung and pancreas transplants are almost as good.

Organ donation shortage

However, organ transplantation requires organ donation and the UK has one of the lowest donor rates in western Europe. The gap between the waiting list (currently 6,963) and the number of deceased organ donors (752 in 2005) continues to increase.

The NHS organ donor register currently holds 13.5 million names and last year 231,485 new patients registered.

Thousands of renal patients continue to receive dialysis —in comparison to transplant patients those on dialysis have a lower survival rate, an inferior quality of life and their treatment is extremely expensive. Hundreds of patients waiting for a liver, heart or lung transplant die each year because of the organ shortage.

In May 2006, UK Transplant published the first comprehensive, UK-wide audit of deaths and organ donation in intensive care.

All heart-beating donors (over 84 per cent of all donors) are certified dead following brain stem tests while in intensive care, and the audit showed that the relatives of 41 per cent of potential organ donors refused consent for donation.

In other words, had consent been given for all potential donors there could have been approximately 1,350 more transplants per year, and the UK would have one of the highest donor rates in the world. The beneficial effects on the transplant recipients and their families would have been immense and the cost savings (for example in dialysis) would be huge.

Every kidney transplant is likely to save the NHS approximately £130,000 over the lifetime of the transplant.

Failing consent

These findings are in stark contrast to the results of market research carried out by UK Transplant, which found that 90 per cent of the public are, in principle, in favour of being organ donors after their death — and almost everyone would accept a donated organ if their life depended on it.

The study identified no surprises in the reasons given by relatives for refusal of consent, in the highly emotive and distressing circumstances of a sudden, tragic death. Many of the reasons were, understandably, emotional rather than logical.

However, one of the most constant findings was that the relatives did not know the wishes of the individual and felt unable or unwilling to come to a decision on their behalf. When the individual’s wishes were known, the relatives overwhelmingly felt able to support those wishes.

New legal position

Practice before September 2006 relied on the consent of the relatives, but two Human Tissue Acts in Scotland and the rest of the UK came into force on 1 September and now give legal primacy to the known wishes of the individual. This makes it even more essential that everyone should think about donation and make their wishes clear to those closest to them — whether they wish to donate their organs after death or not.

For years there has been an unspoken but, I believe, total expectation that organ donation was the responsibility of the transplant units, the donor transplant co-ordinators and, more recently, of UK Transplant.

This remains the case in terms of both the practical arrangements and for national and regional promotion of donation to the public.

However, most general practices will see patients in need of an organ or corneal transplant.

Every primary care organisation will have some involvement in commissioning or funding dialysis. Every district general hospital will refer patients to their local transplant unit. The transplant units themselves cannot find suitable organs for transplantation without help, and I do not foresee a substantial improvement in organ donation until we all agree that we all have a role to play.

The general public should be encouraged to consider donation and register their wishes, and GPs have a major role to play in promoting donation. Members of the public rely on their general practices for access to such leaflets and information.

Registering donors

Transplant UK provides information and links to organ transplant organisations both in the UK and abroad. It is also possible to register a patient in the NHS organ donor register through UK Transplant. For patients who want to find out more, there are downloadable information sheets and leaflets.

We are aware that most of the new GP clinical IT systems do not have the facility electronically to transmit organ donor registrations to the system that updates the organ donor register. We are concerned that this facility is only an optional function of GP systems and it is something that we are pursuing with Connecting for Health.

In the meantime we are extremely grateful to GP practices for continuing either to send the paper forms to the local NHAIS agency (renamed NHS Connecting for Health Systems and Service Delivery since the end of March 2005), or type in the data directly.

- Mr Rudge is managing and transplant director, UK Transplant, Bristol

How to register

Patients who wish to become organ donors after their death can resister online or by telephone:

UK Transplant — www.uktransplant.org.uk.

NHS organ donor register — 0845 6060400

Reference

  • Bauber K, Falvey S, Hamilton C et al, Potential for organ donation in the United Kingdom: an audit of intensive care records. BMJ 2006; 332: 1,124–7.

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