Guest post on Max and Keira’s Law: “People will still have a choice whether or not they want to donate.“

[MumsnetGuestPosts]

Last week (Friday 15 March), the Organ Donation Act received Royal Assent and passed into law in England. The law has been named Max and Keira’s Law after the inspirational Keira Ball, who donated her organs when she died aged 9 years old, and the young recipient who received her heart, Max Johnson.

The new law means that from spring 2020, all adults in England will be considered a potential organ donor unless they record their decision not to donate or are in one of the excluded groups. These groups include under-18s and people without the mental capacity to understand the law change.

Max and Keira’s Law is now in place, however, it will be a year before the new system is introduced. This will allow time for people to understand what the law change means and have time to consider their options.

The move to an ‘opt-out’ system in England follows a successful change in Wales in December 2015. Just a few months ago, the Welsh government published figures that showed that Wales now has the highest organ donation consent rates of any of the UK countries.

Why does changing the law matter?
Currently, only around 5,000 people every year die in circumstances where they can potentially donate their organs. Each donor is incredibly precious. The more people who
donate, the more patients will receive the life-saving transplant they desperately need. While the majority (80%) of people in England tell us they support organ donation, this is not reflected in the numbers (38%) who have currently registered their donation decision on the NHS Organ Donor Register. We hope that more people will register their organ donation decision and speak with their families regarding their choice.

What does the law change mean for me?
People will still have a choice whether or not they want to donate and organ donation will still be a gift. The families of potential organ donors will still be approached before donation goes ahead. Regardless of whether or not you decide to donate, we would encourage you to register your decision on the NHS Organ Donor Register.

Common questions and misconceptions

Will you automatically take my organs if I don’t opt out?
No. If someone hasn’t registered a decision then we will speak with their family and ask what their relative would have wanted or what the family feel is right. We encourage people to register their decision, but families will continue to be involved, so it is important to share your decision with them.

Am I losing control of what happens to my body?
It will still be for you to choose if you want to be an organ donor and you still have the ability to opt in or opt out. Your family will always be approached before donation takes place, so it’s important that family and friends know your decision.

Will doctors still try to save me if they know I’ve agreed to donation?
If you are seriously ill or injured, your medical team will always do everything possible to save your life. If, despite their best efforts, death is inevitable, only then will organ and tissue donation will only then be considered. Only when end-of-life care planning starts is
the NHS Organ Donor Register accessed and the possibility of organ donation discussed with your family.

If I am happy to donate some but not all of my organs, should I opt out?
If you are willing to be a donor but want to specify which organs and/or tissue you would like to donate, you should register as a donor on the NHS Organ Donor Register. This allows you to state which organs and tissue you are prepared to donate.

Why do you seek the support of families for donation?
Families are always involved in organ donation discussions. This is out of consideration to the family and to gather important information, such as medical, lifestyle and travel history. Family information, together with medical notes and tests, is vital to understanding whether the person’s organs are safe to transplant into somebody else.

What now?
There is plenty of time before the new system comes into effect. By registering your decision and speaking with family, you will make it easier for them if you die in circumstances when organ donation is possible.

Visit the [[https://www.organdonation.nhs.uk/faq/what-is-opt-
out/ NHS Organ Donation website]] to find out more and to register your decision.

MNHQ UPDATE: Phil Walton, operational lead for Opt Out, will be returning to the thread today (21/03/2019) to answer your questions from 6pm-7pm

@misscockerspaniel

What if you happy to donate everything except for your reproductive system (uterus etc)? I couldn't see this option listed on the opt-out list.

At the moment in the UK, there is a limb transplant programme, but face and uterus transplant programmes have not yet been introduced.
The current system of ‘opting in’ to donate does not cover rare or novel transplants such as limb, face or uterus donation. A person’s family would have to give explicit permission before their loved one’s limb, face or uterus could be donated.
It is the Government’s intention to maintain the status quo for novel transplants even after the opt out system is introduced, so express consent will be required for donation of that organ or tissue to go ahead.
It has always been the Government’s intention that the opt out system will only include routine transplants. They will be introducing secondary legislation to clarify this point and state which organs and tissues are not covered by deemed consent.
If you don’t wish to donate your uterus, face or limbs (or any other specific organs) the best thing is to explicitly state this to your family. The more detailed understanding they have about your organ donation decision, the easier it will be if they find themselves in the situation of being asked to honour your wishes.

When the Opt Out system was introduced in Wales in 2015, people followed with close interest to see what the impact would be. At the end of 2018, the reports showed that Wales now has the highest organ donation consent rates of any of the UK countries. The Welsh consent rate has risen from 58% to 73% and stepped ahead of other countries by some margin. We hope that in time we will see the same impact in England.

That's not in anyway surprising, is it, given the change,?

Whose consent does the "consent rate" measure?

@Bowlofbabelfish

I have a question about blood donation.

what methods are in place to make sure the SEX of a blood donor or recipient is known and recorded correctly in order to avoid sex based adverse effects (given that, for example, death rates are higher in men who receive blood from women who have ever been pregnant and that such women’s blood can potentially contain various antibodies)?

Are the team aware of the vastly higher HIV rates in transwomen? How is this reconciled with restrictions on blood donation from men who have sex with men if these donors are recorded as women - no true sexual history can be obtained if sex is recorded incorrectly. Thus is it true that a high risk population is donating with fewer restrictions, putting the public at risk simply by declaring gender? If so how can this be justified?

I would appreciate an answer other than ‘we screen all blood’ since I know someone whose critically ill baby has just been told the blood they received is bacterially contaminated. No screening is 100% - risk categories are important.

Thanks.

This is not entirely my area of expertise however, i have sought some clarity on this question.

Transwomen can donate blood and we are very grateful to everyone who donates blood and saves lives.
Transwomen have the same donor eligibility criteria as other female donors and are subject to exactly the same criteria as other people.
Blood is not just used for red blood cells, but also for products such as plasma. We manufacture plasma from male donors because they are less likely to have antibodies due to pregnancy. Transwomen are regarded as biological men for the purposes of production of blood products.
There were questions about transwomen and risk. There is no direct link or evidence between gender identity and high risk behaviour. Any high risk behaviour is explored before donation, as it is with all donors, and all donations are tested.

Phil, thank you for this fascinating webchat.

I'll let you answer the other questions before I ask mine!

@ILuvBirdsEye

Men can give blood every 12 weeks and women can give blood every 16 weeks -what is the reason behind this?

On the blood donation website it says:
Back in 2012, we amended our IT systems to allow us to invite men to donate every 12 weeks. The trouble was that the system couldn’t distinguish between male and female donors and so women were able to book appointments online with the same frequency.

Your systems now record Gender NOT Sex (see screenshot) so my question is how do you know who to allow to donate every 12 weeks and who needs to wait for 16 weeks?

Our research shows that blood donation has a bigger impact on females than males. Women have lower iron levels and they need more time between donations to rebuild their iron stores. Replacing the iron lost by donation through diet alone can take a long time, especially with other concurrent losses (for example, menstruation in women). If you’re planning to become pregnant, it’s especially important that you build and maintain healthy iron stores to support the increased iron requirements of pregnancy.

“Transwomen have the same donor eligibility criteria as other female donors “

But transwomen are not female & it is concerning that blood & transplant services ignore science.

@NoCauseRebel

So, what is being done to actually encourage dialogue between families to ensure that someone’s wishes are carried out? Because that is the issue really isn’t it? In countries where donations have increased this hasn’t happened because of opt out, it’s happened because of A, greater awareness of the need to discuss your wishes before the time of your untimely death, and B, because of the work done by the donor coordinators in order that the family are approached in the most sensitive manner possible when their grief is at their highest and it may be hard for them to make such a decision. So what action is being taken to bring this dialogue into play to ensure the increase of donations?

I am in agreement with organ donation and am myself likely to need a heart transplant in the future. And I have had the conversation with my family following a serious illness in 2016 where I ended up asking a family member afterwards “so erm, did the prospect of organ donation come up at any stage?” When they thought I might not make it. However, while I am aware that at the moment the law is such that the next of kin still have the overriding say either way, I believe that any law is far more easily changed once it comes into force, and this sits very uncomfortably with me. So in conjunction with conversations with my family I will be opting out, but I still know that my organs will be donated but in conjunction with the decisions of those who know me and my wishes rather than the government.

Without these conversations the law is pointless. So what are you doing about them?

As you know, around 48% of next of kin still override someone’s wish to donate even if they are registered, so without the push to encourage dialogue this will still continue to happen and donations will decrease not increase.

When the Government announced its response to the organ donation consultation in England, it stated that it would be running a 12-month communication campaign prior to the new system coming into effect. NHS Blood and Transplant has been working closely with the Department of Health and Social Care to pull together the plans for this campaign and will be working with the media, partners, and charities to communicate as widely as possible that the law around organ donation is changing and the choices available to people. The importance of speaking with your family and making them aware of your organ donation decision will play a strong part.

The importance of having a conversation is a message which is emphasised heavily throughout all our campaigns and materials. The most effective way to spread the word is by every person continuing to raise the issue and speak about organ donation, with family, friends, children, work colleagues and others in their social circles. We are grateful to everyone who helps these conversations take place.

We know that the vast majority of families – over 90% - will support donation proceeding if they know that is what their loved one wanted. This is why it is so important that people record a decision on the Organ Donor Register and then tell their family about what they want to happen.

@NopeNi

Yes, I cannot fathom why (having opted out) you'd ask someone's relatives AGAIN if they didn't mind after all. It's not their choice!

NHS Blood and Transplant’s Specialist Nurses have a responsibility to determine the last known decision of a potential donor. The only way we can do this is if we speak to the family. They may have important information about the person’s decision around donation that is more recent than any decision recorded on the NHS Organ Donor Register.
If you have already made a decision about donation and shared this with your family, they would be expected to support your decision, whatever that is. However, consideration will always be given to the views of the family, and clinicians will never proceed if the family objects strongly.

Thank you. Could you add a space for comments on the opt out form so that the individual has the ability to give firm instructions eg, I am not prepared to donate my uterus or face ? This would give peace of mind.

Is there a cast-iron way of guaranteeing that my wishes to be an organ donor can't be overridden after my death by a relative or unmarried partner, given that I'll be dead and can't argue back?

I'm on the organ donor register, I have spoken to my adult children about my wishes, and I'm divorced. Could an elderly parent (say), or an unmarried partner, under any circumstances put the mockers on my wishes? If so, how do I legally exclude them from the process?

There is no direct link or evidence between gender identity and high risk behaviour

This is incorrect. The CDC (hope that’s a good enough reference point for you) have just revised their risks but transwomen and transmen both have a VASTLY higher HIV risk. Overall HIV prevalence estimates from laboratory-confirmed studies was 9.2% (95%CI:  6.0% to 13.7%) with 14.1% (95%CI : 8.7% to 22.2%) for transwomen and 3.2% (95%CI : 1.4% to 7.1%) for transmen.

Source: CDC: i-base.info/htb/35574

Are you saying this isn’t taken into account? This is a high HIV risk population and if you aren’t treating them as such based on political correctness that is extremely worrying. can you please confirm or deny that elevated HIV risk in this population is recognised for public safety as it is for other high risk populations.?

Any high risk behaviour is explored before donation, as it is with all donors

Again incorrect. If you allow a male to identify as a female, you simply aren’t asking the question ‘are you a man who has sex with men?’ Are you?

,and all donations are tested.

Yes I know. But it’s not 100% is it? Otherwise there’d be no need to ask about risk.

@U2HasTheEdge

If I opt out, can my family still decide to donate my organs? I want my family to be able to give my organs freely without the presumption of consent.

I would like to know this too.

If the decision still lies solely with NOK then I can't see the point. I also do not like that it presumes consent.

Consent can only be deemed or presumed in cases where an individual (the deceased) has not made known their donation decision. If you record that decision on the organ donor register or tell a family member what you want to happen regarding donation, then consent cannot be deemed. This would represent an express decision and therefore your own consent (or not if you choose not to want to donate). Either way, that decision is respected. The forthcoming media campaign will be clear that donation is your choice and its your decision to make. If you do not record, discuss or make known a decision, only then can deemed consent be considered.

@Grace212

Phil "If you had opted out, then the specialist nurse will approach the family with that information and clarify with them that it is your last known decision"

I think that's still poor - the nurse shouldn't approach the family at all. If that's my last recorded decision, then that decision stands, and my family should not have someone asking about it.

Thanks for this response. A Specialist Nurse isn't just there to talk about organ donation but will support the family through the end of life scenario. We have also had instances in Wales where individuals had opted out on 1st Dec 2015 when the law changed but 3 years down the line had had specific conversations about wanting to be a donor.

The conversation with the family is always sensitively conducted and only done to inform them of the last recorded decision available to the Specialist Nurse. There is never any pressure to over turn.

@misscockerspaniel

Thank you. Could you add a space for comments on the opt out form so that the individual has the ability to give firm instructions eg, I am not prepared to donate my uterus or face ? This would give peace of mind.

If you're prepared to donate other organs but not face or uterus then you should opt-in. As stated earlier in the thread, face and uterus transplants are still in the research phase in the UK and would not be covered in this legislation. Express consent would be needed from the family and if you have told them already that you don't want to donate those, that will be respected.

Opting out can only be done by telephone or online as the record is then immediately captured. However, if you register an opt out, its an opt out of all organs, not just the ones you specify.

Hi Phil, thanks a lot for coming on here and attempting to answer our questions - it's a better performance than some high profile charities and politicians lately.

You say Transwomen have the same donor eligibility criteria as other female donors and are subject to exactly the same criteria as other people. and Transwomen are regarded as biological men for the purposes of production of blood products
Without getting into details about who can do what and why... How do you know who is what sex as you are no longer collecting biological sex as per the screenshot in my earlier question? Is this not a gaping hole in your data? Should you not be collecting both sex and gender? (In my view, sex as mandatory and gender as optional).

Also, for what it's worth, I was reminded to opt-in and sign up to donate blood so it's not all awkward questions.

@AutumnCrow

Is there a cast-iron way of guaranteeing that my wishes to be an organ donor can't be overridden after my death by a relative or unmarried partner, given that I'll be dead and can't argue back?

I'm on the organ donor register, I have spoken to my adult children about my wishes, and I'm divorced. Could an elderly parent (say), or an unmarried partner, under any circumstances put the mockers on my wishes? If so, how do I legally exclude them from the process?

If you have concerns that a family member or someone close to you would not respect your donation decision on the Organ Donor Register, then there is the option to appoint 2 representatives to make that decision for you. The law (as it has always been, not just new for this opt-out law) places an appointed representative highest of all in the family hierarchy. This will allow you to appoint someone you know and trust to carry out your last known donation decision.

When your NOK would happily feed you to the pigs, knowing that they would be asked is not reassuring.........

"If you have already made a decision about donation and shared this with your family, they would be expected to support your decision, whatever that is. However, consideration will always be given to the views of the family, and clinicians will never proceed if the family objects strongly."

Thanks for replying to my questions, I appreciate it. I'm still confused though.

To clarify: if I said no, but had no family or close friends at the time of my death to reaffirm that - or my family didn't remember my wishes or actively went against my decision ... would you still go ahead? Even though I'd opted out?

Did you miss my question? It only needs a quick yes or no answer.

NopeNi
Yes, I cannot fathom why (having opted out) you'd ask someone's relatives AGAIN if they didn't mind after all. It's not their choice!

"NHS Blood and Transplant’s Specialist Nurses have a responsibility to determine the last known decision of a potential donor. The only way we can do this is if we speak to the family."

So it makes no difference if you have opted out. The nurses will still ask the grieving family to donate organs. Is they any point in having an opt-out option if it's going to be ignored?

@ILuvBirdsEye

Hi Phil, thanks a lot for coming on here and attempting to answer our questions - it's a better performance than some high profile charities and politicians lately.

You say Transwomen have the same donor eligibility criteria as other female donors and are subject to exactly the same criteria as other people. and Transwomen are regarded as biological men for the purposes of production of blood products
Without getting into details about who can do what and why... How do you know who is what sex as you are no longer collecting biological sex as per the screenshot in my earlier question? Is this not a gaping hole in your data? Should you not be collecting both sex and gender? (In my view, sex as mandatory and gender as optional).

Also, for what it's worth, I was reminded to opt-in and sign up to donate blood so it's not all awkward questions.

As I stated earlier on, straying into the area of Blood Donation is something that I have limited knowledge on and can only really speak with authority on Organ Donation and an opt out system. What I promise I will do is follow up these blood donation questions, especially those about transgender with my specialist colleagues and ask the mumsnet administrators to post an updated and comprehensive response.

What I promise I will do is follow up these blood donation questions, especially those about transgender with my specialist colleagues and ask the mumsnet administrators to post an updated and comprehensive response.

Thank you Phil - I appreciate that. Also appreciate when someone says they don’t know! I will await the answer.

@Elphame

If an individual opts out specifically because they do not want to donate will the NOK be able to over ride this opt out?

Sorry - i did miss this question in the list - i wasn't ignoring you, i promise.

If you opt out and that is your last known decision, then absolutely, donation will not go ahead.

Thank you - but if my NOK say I changed my mind then you would take my organs? Even if in reality it is the last thing I would want and they know that?

Thanks Phil, for answering my question.

For what it's worth, I think all donation teams and records should capture BOTH sex and (as optional) gender identity. Stick with biomedical science.

Look forward to your update.

You can look forward to my organs.