NHS introduces new training to ensure tissue and eye donation is not overlooked in the end-of-life process

This Dying Matters Week (5 to 11 May), NHS Blood and Transplant is calling on healthcare professionals and the public to ensure tissue and eye donation is an integral part of end-of-life care planning.

While less than 1 per cent of people who die in the UK each year are eligible for solid organ donation (like kidney, liver or heart), tissue and eye donation – including corneas – can be an option for many more.

Corneal donation can help restore the sight to those suffering from severe sight loss and painful eye conditions; while tissue donation (including skin, bone, tendons and heart valves) can repair damage caused by burns, cancer or other trauma.

Research shows that cornea donation is one of the least understood forms of donation – by both the public and healthcare professionals – and many people are unaware that despite being unable to donate solid organs there is a potential to donate tissue and corneas after death – even if they have had cancer or poor eyesight.

To address this, NHS Blood and Transplant has launched a new e-learning module - part of the NHS wide e-ELCA (End of Life Care for All) programme – and is writing to NHS trusts to encourage staff to take on board and implement it.

The training, which has already been implemented by Hospice UK in a number of hospices across the country and is showcased on their innovation hub, will provide all healthcare staff across the UK with the knowledge and confidence to identify potential tissue and eye donors and refer them appropriately, even outside of hospital intensive care units and Emergency Departments.

Glen's father, Gordon, died on a medical ward at Scunthorpe Hospital in February last year and had previously expressed a wish to donate his tissue and corneas when he died. The family made his wishes known to hospital staff during his final hours and presented them with Gordon's donor card. Sadly, due to a lack of understanding of the referral process, donation was not possible.

Glen explains:

"It was the very unfortunate lack of awareness across those providing the end-of-life care, as well as the misunderstanding around the different types of donations, that ultimately meant my father's opportunity to donate was missed. After the event, the staff on the ward expressed to me that they simply didn't know the correct procedure, and were confused by the terminology, when presented with a donor card. It is therefore crucial that awareness is raised amongst both healthcare workers, and the public who rely upon those staff at such a difficult time, to ensure that this cannot happen again."

Last year, 3,529 people in England had their sight restored through corneal transplants. However, there is still an urgent need for more people to donate their corneas as currently around 6,000 patients wait for corneal transplants with an average wait time of around 18 months.

The benefits of the training

Following Glen’s experience, Northern Lincolnshire and Goole NHS Foundation Trust (which runs Scunthorpe Hospital) has taken swift, positive action and is spearheading the campaign in a hospital setting to inform and empower staff by embedding the e-ELCA training package into their internal e-learning platform and sharing it widely across the organisation.

In a promising example of progress, just weeks after implementing the e-learning at the Trust, staff at Goole Hospital supported a patient's wishes to explore cornea donation. Thanks to their efforts, the patient went on to donate both eyes – a legacy that will help restore vision to others.

The Trust has since requested additional resources to promote donation and will be highlighting this work in its annual report, demonstrating that the concerns raised have been heard and acted upon.

Statements

Statement from Simon Treacher

Simon Treacher, Lead Nurse for Patient Experience at Northern Lincolnshire and Goole NHS Foundation Trust said:

"We extend our sincere apologies once again to Glen and his family for the circumstances that led to his father's wish to donate not being fulfilled.

"Their courage in sharing this experience has helped us reflect, learn, and take meaningful action. I will be sharing this case with our Patient Experience Group and am personally championing the e-ELCA training package with our Nurse Directors, so it can be shared widely across all care groups.

"Embedding this education is a vital step in ensuring our staff are confident in having sensitive, informed conversations around end-of-life care and donation. We are committed to making sure every patient’s final wishes are honoured with compassion and dignity."

Statement from Chris Greaves-Thomas

Chris Greaves-Thomas, NHS Blood and Transplant’s Regional Tissue Donation Nurse Specialist for the North of England said:

"This is exactly the kind of cultural shift we want to see across all healthcare settings in terms of informing staff and patients on the option of tissue and eye donation as part of the end-of-life care process.

"When healthcare professionals are empowered with the right tools and information, we can honour more patients' wishes and transform more lives through donation.

"At the same time, we encourage everyone to register their donation decision on the NHS Organ Donor Register and take the time to ensure your family are aware."

What you can do

You can find out more about organ and tissue donation on our website and register your decision to donate.