Draft Human Tissue (Permitted Material: Exceptions) (England) Regulations 2020

Lord Goddard of Stockport Excerpts

Monday 18th May 2020 Lords Chamber

[Lord Goddard of Stockport (LD)]

I too am on sound only, and some may say that that is for the better.

In my view, deemed consent legislation is long overdue. Subject to safeguards and ethical checks and balances, which I am sure finer minds than mine are addressing, we must get on with this.

I shall address my comments mainly to kidney transplants, as this is a cause close to my heart. By far the most common transplants are kidney-related, and the numbers for that particular sector are staggering: 3 million people in the UK have chronic kidney disease, including 1,000 children, while 65,000 people are being kept and treated for kidney failure by dialysis or transplant. In the UK, there are over 6,000 people on the transplant waiting list, and at least one person every day will die hoping for a kidney transplant. NHS Blood and Transplant has estimated that the change in the law has the potential to allow 700 more transplants each year by 2023, as the noble Lord, Lord Hunt, commented earlier.

To be clear, when kidneys fail there are three things that can happen: dialysis, transplant or death. Dialysis is distressing and demeaning; with four to five-hour sessions every week and dietary and fluid restrictions, people are unable to continue with work, families and relationships are strained, and depression is common. It has been reported that levels of pain are equivalent to those suffering from terminal cancer. Patients are exhausted, with aching bones, reduced mobility and constant aching.

A transplant is transformational in restoring quality and quantity of life. I commend NHS Blood and Transplant for its achievements, with over 50,000 people now alive with transplants. Kidney transplants are economically beneficial; maintaining a person with a transplant costs around £5,000 per annum, compared with over £30,000 per annum for those on a dialysis machine.

This legislation is not all about kidneys; the heart, liver and lungs are included specifically. However, other organs, such as the pancreas, the intestine and the uterus, are vital organs that can save lives and should be considered with express consent. Worldwide, the kidneys are the most transplanted organ, followed by the liver and the heart.

However, it seems that the Government have advised that it is unlikely that transplants will proceed under deemed consent during the Covid-19 pandemic, because people are distanced, and communication between relevant parties is more difficult. If this is the case, when will deemed consent actually come into force? I note that the noble Lord, Lord Bethell, stated confirmation on 20 May 2020. I hope he will clarify that later.

NHS Blood and Transplant was set up on 1 October 2005, taking over the functions of UK Transplant, founded by Dr Geoffrey Tovey in 1972. We live in unprecedented times of stress and uncertainty, and the sooner this legislation is enacted, the sooner many thousands of people will have renewed hope that their lives could be improved. It would be excellent if, less than 50 years from Dr Tovey’s initial ground-breaking work, this finally became the law.