Human Tissue (Authorisation) (Scotland ) Bill : David Stewart's speech



11 June 2019

This is, of course, crucial legislation.

How do we raise the level of organ donation in Scotland to match the needs of those who are desperately awaiting transplantation?

The principles of the bill have been broadly accepted across the political divide, notwithstanding the lodging of a number of amendments that were designed to improve and, indeed, develop it.

I acknowledge the help of the minister and his officials with my amendment, which is now in Joe FitzPatrick’s name—I stress that no copyright fee is required.

Scottish Labour has long been supportive of a soft opt-out for organ donation, and we are glad that Scotland is finally moving to adopt such a system.

Credit should be given to individuals across the political divide who have consistently campaigned for that change.

In particular, we owe our thanks to Scottish Labour’s Anne McTaggart for her proposed member’s bill in the previous session of Parliament. Although it was unsuccessful, it significantly moved the debate forward.

I also acknowledge the fantastic contribution of Mark Griffin, who has a big family relationship with the issue.

Wales has led the way on the issue.

Although it is still relatively early to assess the impact of the legisation there, there are positive signs of increased levels of family consent and donations.

We must learn from the experience of implementation in Wales, including, as the minister said, about the importance of resourcing the public awareness and information campaigns.

Scottish Labour’s successful amendments at stage 2 have strengthened the awareness-raising elements of the bill by requiring annual campaigns.

We have also secured a five-year assessment of the changes so that there will be clear learning on the effectiveness of implementation and improvements in organ transplantation.

However, the bill is not the only change that is needed to increase transplantation rates in Scotland.

The Scottish Government must ensure that there is sufficient investment in Scotland’s infrastructure to support an increase in organ donations.

As we have heard from previous speakers, including the minister, in 2018, 426 patients in the UK died while they were on the transplant list or within one year of removal.

As Miles Briggs said, Scotland has the highest percentage of people on the organ donation register in the UK but the lowest actual organ donation rate per million of population.

The level of family authorisation is also low in Scotland.

The key issue is the gap between those who wish to donate organs and the number who actually go on to join the organ donation register: 80 per cent of people in Scotland support donation, but only 52 per cent have signed up to the donation register.

In simplistic terms, the bill’s purpose is to bridge that divide and encourage those who support organ donation but who have not registered on the ODR to have their wishes recorded and respected.

Let me tell you about my friend Gary. He is in his mid-50s and lives in Glenrothes, in Fife.

Nearly two years ago, he was given the gift of life by a crucial heart transplant.

Prior to that, he was on the transplant list for 12 months and had a pacemaker.

He slowly deteriorated and, without the transplant, he would have died.

Gary cannot praise enough the dedicated support of the nursing staff at the Golden Jubilee hospital.

He told me that

“it was a matter of life or death.”

We must look at international evidence and best practice, which are crucial.

We know, from background research by the British Heart Foundation, that people who live in countries with a soft opt-out system are more willing to donate their organs.

In general terms, a soft opt-out means that, unless the deceased expressed a wish in life not to be an organ donor, consent is assumed.

Of the top 10 countries for donors per million of population, nine have an opt-out system.

That brings us to Spain, which I mentioned at stage 1 and which leads the world league table for organ donations.

The Health and Sport Committee took evidence on why Spain is so successful, which I know the minister has a big interest in.

The three main reasons are that Spain has a comprehensive network of transplant co-ordinators, it has a donor detection programme and it provides more intensive care beds.

In winding up, will the minister comment on that? Given that this is not a zero-sum game, we must concentrate on increasing the number of intensive care beds as well as changing the consent system.

I will be brief, as I am conscious of the time.

In the stage 1 debate, I spoke about two issues that the Law Society of Scotland raised, so the minister has had warning of them.

The Law Society asked whether deemed authorisation is consistent with the ruling in Montgomery v Lanarkshire Health Board, which was a Supreme Court case about informed consent.

It also asked whether the bill is consistent with the European convention on human rights, as dealt with in the case of Elberte v Latvia in 2015, when article 8 was found to have been breached.

The five-year review will allow considered reflection on those points.

What assessment has been made that medical professionals will, in practice, take into account the family’s wishes?

The bill is a vital piece of legislation that will be a matter of life and death for many Scots, such as my friend Gary, who desperately need a life-saving organ donation.

As Gibran said,

“You give little when you give of your possessions. It is when you give of yourself that you truly give.”

later in the debate....

This has been an excellent debate with well-informed and thoughtful contributions from across the chamber.

I believe that the key point that has been echoed by several members is that the bill is crucial legislation because we need to raise the level of organ donation in Scotland to match the number of people who are desperately awaiting transplants.

Miles Briggs, who is currently absent from the chamber, paid tribute to people who are on the organ donation register and their families.

He is right that we need to start a national conversation.

He was also right to thank all those who gave evidence to the Health and Sport Committee.

I believe that it is important that we analyse the experience in Wales, albeit that the system there is still relatively new.

I summarise his point on that by saying that he said that where Wales walks, we follow.

He was also correct that we should look at provision of intensive care beds.

Alison Johnstone made the important point that organ transplantation is a vital development of scientific healthcare.

As she said, there is a will to donate in Scotland, as has been clearly evidenced in polling.

I agree that the number of family consents will rise, and that it is important to have the wider strategy of annually analysing opt-ins and opt-outs.

Alex Cole-Hamilton made the genuine point that, before he was elected, his wish for a member’s bill would have been to have one on organ donation.

He also made the vital point that the gift of giving has always been there, and we should always remember that.

I agree with him that it is important to praise organ donation nurses, some of whom members of the Health and Sport Committee met.

We should never forget the need to tell donors’ life stories.

Emma Harper, who is a former nurse, obviously has tremendous experience in the area.

She talked about the safeguards in the bill, the pre-death procedures and the need to raise awareness.

I am glad that the minister introduced an amendment on that.

I congratulate the Government on the work that it has done through the “We need everybody” campaign.

Lewis Macdonald talked about the opportunity to launch the organ donation campaign afresh.

Of course, we should never compromise families’ rights, but we need to widen the pool of organ donation.

He said that awareness raising needs to be highlighted, as has been done through amendments to the bill, and he pointed out that the amended legislation will be reviewed.

The stakes are high, so we need the legislation to be a success.

More than one in 10 people on the waiting list will die before they get the transplant that they need.

As BMA Scotland has suggested, the bill will change the culture and philosophy in society, so that donation becomes the norm.

We need to aim for societal change so that organ donation becomes accepted and is part of the fabric of our national life.

The greatest gift that a person can ever give is the gift of life itself.


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