Real life and law making collide

 

You're very fond of bemoaning in your comments that real life rarely intrudes too closely on debates in the Assembly over sub clauses in legislation and arguments over policy points. You don't put it quite like that, of course. You use words like 'bubble' 'ivory tower' and pithy insults.

But in committee room one this morning, we saw the collision of real life and legislation close up.

They didn't need laminated cards this time. This morning's Health Committee (click on the link to watch in full) on the proposed opt-out Bill on organ transplantation was not far off a masterclass in scrutiny - and you don't hear that too often in the Assembly.

It was the Health Minister's final evidence session of the Bill's stage one scrutiny and came after a series of hearings which have left many of the committee members seriously uneasy about the Bill - however much they may applaud its aims.

This morning's testimony had all the drama of Casualty - for those of you out there in the real world, I'll try and capture some of it for you - and why the Bill in its current form could be in real trouble.

First of all, the basics. The Welsh Government is legislating to change the current system of organ donation in Wales from opt in, where you sign up to say you're willing for some or all of your organs to be donated in the event of your death, to opt out, where you are deemed to have consented to have your organs removed for transplant unless you've previously specified you don't want to be a donor.

Over the past few weeks, the committee has been hearing from people involved in organ transplantation, from the academic ethicists right through to those who have to have those unimaginably difficult discussions with families at their time of greatest grief about the personal wishes of their loved one at the point of death.

Every witness, without exception, was supportive of the aim of increasing the number of donors to meet the UK-wide shortfall. But pretty much every witness raised some concerns, be they ethical or practical, about the way the proposed Bill is currently drafted.

Today was the AMs' chance to put those directly to the health minister and her officials. With the help of my colleagues who didn't miss a word, I'll try and summarise as best I can some often complex exchanges - but the upshot is that one of the key aspects of the Bill which has dogged it from the very first may now have to be rewritten before it's brought back to the Assembly for a vote.

Let's look at that first. It's the role of family and friends in deciding whether a transplant should go ahead. Under the current system, there is a "ranked list" of family and close friends who can be consulted by clinicians about taking organs. It puts the wishes of close relatives, such as parents or spouses in a hierarchy above those of more distant ones. Under the new system, there would be an "unranked list" of family and close friends.

The significance of this change, confirmed by Lesley Griffiths in previous evidence to the committee, is that under an "unranked list" as proposed, any family member or close friend would have the right to object to a transplant taking place, even if other, closer blood relatives wanted it to go ahead.

This has rung alarm bells with AMs, clinicians and transplant campaigners, some of whom fear that it could actually reduce the number of donors, rather than increase it. What family ever agrees about anything, asked one consultant rhetorically.

And this is where real life intrudes on legislation. Because at present, there is a practical reality when the situation arises, one in which a specialist transplant nurse will look at who is present around the bed, and then quietly speak to the family member or members who they believe will best represent the wishes of the deceased.

How do you commit that to paper? How do you write it into a new piece of legislation hoping that, in practice, individual doctors and nurses will carry it out in the most demanding of circumstances using their skill, diplomacy and common sense - and it's that which has clearly spooked the AMs who will have to vote the Bill into law.

We can vote on this and walk away, said Kirsty Williams, Lib Dem leader and committee member. It's the doctors who are going to have to make this work afterwards.

Today, under some forensic questioning, Lesley Griffiths more than hinted that she's getting ready to scrap the plan for the unranked list in the Bill as currently drafted - and instead stick with the ranked list approach currently in place. Her officials suggested the original reason for the switch was that such a "ranked list" was no longer as relevant in a society where the nuclear family is much less common than in the past. But it seems the realisation has dawned that the unranked list has the potential to create chaos at exactly the time when it is least needed.

The fact that there's widespread confusion about the key area even this far into the legislative process doesn't reflect well on the government's communications strategy for the Bill, but it's precisely this area which is also giving AMs a great deal of pause for thought.

It's acknowledged by all sides that the new system, if introduced, would be ruled unlawful IF it was found that members of the public weren't sufficiently aware of it to be able to give informed deemed consent.

The government is writing into the legislation itself a requirement for it to carry out a wide-scale publicity campaign to ensure that every member of the public and everyone coming to live in Wales is aware that unless they opt out, they will have deemed their consent for their organs to be donated.

But the budget they've set aside for this - £2.9m over 10 years - was met with scepticism by AMs this morning. Asked to account for what appears to be such a tiny sum for such a huge and important campaign - remember, the very lawfulness of the legislation, as well as public confidence in the system depends on it - the minister and her officials said they'd based the costings in part on the campaign to educate the public on the smoking ban.

Eyebrows were raised even further at this and further still when the officials said the costs would be front-loaded, with £2m over the first two years, and £900,000 over the following eight years. These AMs are old hands at fighting election campaigns, remember, and they know how much it costs to reach just a fraction of the population, let alone all. And how do you define public awareness? 100 per cent knowledge in opinion polls? 95? 90? Back to the real world again.

On this though, the Minister wasn't for turning. She was confident that the costing for the publicity campaign was robust.

If you've sensed from all this that the committee is uneasy about many aspects of the Bill, then you're right. Crucially for Lesley Griffiths, the questioning from the Labour AMs on the committee, Mick Antoniw, Lynne Neagle and Rebecca Evans, and the chair, Mark Drakeford, was just as tenacious as from their Tory, Plaid and Lib Dem counterparts. And this isn't something the government can simply whip its backbenchers into line on either, particularly if the report now to be drawn up from the health committee raises doubts, as now seems likely.

By the end of the evidence session, several of the AMs appeared to be questioning the very need for the change to opt-out in the first place. On the government's own figures, the change is predicted to increase the number of donors in Wales by 15 every year. With the cost of introducing the system put at more than £8m, they asked, why go through this lengthy process of legislating? Why not just spend the £8m on a substantial publicity campaign aimed at increasing the numbers of people carrying a donor card, as in the current system? That could well have a similar or even greater impact on donation rates.

The question was still hanging in the air as the Minister and her officials filed out of the committee room.

Is there a chance that the government will simply drop the Bill? Unlikely. They've had the toughest possible lesson in what legislating way out of the Assembly's comfort zone feels like, and if there was a vote tomorrow on whether to make it law, I wouldn't be in the least confident that it would pass.

But on the government's timetable, that final vote is due to take place before AMs leave for their summer holidays this year.

 
Betsan Powys, Political editor, Wales Article written by Betsan Powys Betsan Powys Former political editor, Wales

A big day for health in Wales

A day of big health stories in Wales is capped with a potentially very significant announcement.

Read full article

Comments

This entry is now closed for comments

Jump to comments pagination
 
  • rate this
    -2

    Comment number 45.

    Re 37

    But you are Welsh, John. You said it yourself, WE are playing Italy on Saturday.

    I think - as always - that there is a level of paranoia here. Some have clearly come to their position on this because of their opposition to anything that comes from WAG and WA. John, in his usual Montana mode just attacks all politicians. That is just silly redneckism, I'm afraid .

  • rate this
    0

    Comment number 44.

    John if thy have a short shelf life what is the point of this legislation. Unless they can sell them off to the highest bidder. Where Politicians and Accountants are involved along with privatisation plans. Sorry I do not trust them. My organs will go with me.

  • rate this
    0

    Comment number 43.

    John a very short shelf life. They were kept for years at Alderhay. That is what worries me. Along with the NHS looking for funding.

  • rate this
    -2

    Comment number 42.

    37.John Tyler
    yet this legislation will confirm me as Welsh, not English, not British, because of my residency.
    Don't worry John it'll take more than a Grog on the Mantle piece and shouting for Wales on international days to assume your Welsh. You be who you want be my friend

  • rate this
    +3

    Comment number 41.

    ... I believe that in the UK alf, its a bespoke service, organs are taken to order, they have a very short shelf life.

    Which leads us in another direction, what is the point of increasing the number of donors in Wales unless the transplant service of the UK as a whole (England with Wales simultaneously) is modernised and integrated much like the Spanish model ?

    ... no point at all !

  • rate this
    +2

    Comment number 40.

    #38, that reminds me Miss T Fied of ...

    "Work expands so as to fill the time available for its completion"

    Parkinson's law of triviality.

    ... you are not alone, many agree with you, your sentiments might be applied to most politicians and their offices.

  • rate this
    0

    Comment number 39.

    No one is or can perhaps, answer my question.

  • rate this
    +2

    Comment number 38.

    Maybe its me... but just because WAG has the ability to legislate on lots of things - doesn't mean that it needs to

  • rate this
    +4

    Comment number 37.

    ... this legislation:

    it presumes consent
    yet the consent might be set aside
    by the objections of family

    the same as today
    consent might be set aside by objecting families
    for consent freely given.

    So nothing has really changed ...

    ... yet this legislation will confirm me as Welsh, not English, not British, because of my residency.

    a line in the sand, a modern Offa's Dyke ?

  • rate this
    0

    Comment number 36.

    I quite agree Wooodsey.

    Never mind all this chattering about dying and having bits cut off....

    If they could sort out my haemorrhoids I'd let them do anything they liked after I've shuffled off the old mortal coil.

    Aye, there's the rub !

    Oh the shame of it !

  • rate this
    -2

    Comment number 35.

    20.celticfringe

    At some point a constructive viewpoint would enhance the discussion

  • rate this
    +1

    Comment number 34.

    Betsan - your best written piece for quite a while!

    There has never been any cost-benefit logic to changing the opt-in donor system using WAG's or anybody elses's figures.

    And that is before they presume too much...

    If they go ahead with this now the WAG will prove beyond doubt that they are legislating for the sake of being different to England.

    There is a broken economy needing a transplant.

  • rate this
    +2

    Comment number 33.

    29 cardiff996 Agreed. I am not the greatest fan of the WA yet, like you, I do believe that the intention of the Bill is good. As you say lets hope that the WA can design a system that safeguards peoples beliefs and at the same time encourages greater donation.
    I carry a donor card and like MissT Fied I know lots of people who are opposed to "opt out" and will who "come off" the register

  • rate this
    +3

    Comment number 32.

    I would like to know what confidence level is attached to the extra 15 donors a year that this legislation is said to secure.

    Sadly, 2 members of my family have already cancelled their organ donation cards because of their strong disagreement with this proposed law. So that's more than a 10% fall in the number of donors and goodness knows how many organs that have been lost for transplant

  • rate this
    +2

    Comment number 31.

    With the NHS in such dire straights. I wouldn't trust them. Let's be honest it has already happened. Keeping 'Body Parts' for research. My question is still there. What happens with the excess organs which they are bound to get if they are taking everyone's organs. Can you have a 100% guarantee on what they will do with them.

  • rate this
    +3

    Comment number 30.

    The World Health Organisation says we won't have enough antibiotics to treat scratched knees or offer hip replacements within the very near future.

    So why is WG wasting time and money on this?

    The risk is that lifelong donor card holders will cancel their cards because they wish to freely donate an organ rather than feel they are having it taken. Its a subtle but very important point for some

  • rate this
    +1

    Comment number 29.

    Fair enough John and thks. As I said in my first post, at least they are talking about this and nothing is yet agreed. Which is just how things should be. So one would hope that if the WA does its job right only a good system will be impemented..Especialy for something as sensitive as this.

  • rate this
    +1

    Comment number 28.

    What you and I need to worry about, Alf, is not whether rich or poor people get the transplants, but whether there will be a points system based on criteria other than immunological match. So a recently married university graduate gets 20 points: a whinging old f... of an OAP gets3 points. The Birkenhead rules plus.

  • rate this
    +2

    Comment number 27.

    26 Cardiff996 - the answer to your question is, sadly, no. Which explains why so many experts have expressed reservations about this piece of legislation.

    This is not about my views or your views on donation - if it was that simple then, like me, we would all carry doner cards. The proposed legislation raises many more questions including the issue raised by "Alf"

  • rate this
    -1

    Comment number 26.

    24. Arn't these points already part of the Donor System Alf and covered by this? All Wales is looking at is the method by which organs are donated. Once donated then the national donar scheme kicks in. How the organs are donated in the first place is what is discussed. I suppose anyone not liking the system, opts out of this.

 

Page 1 of 3

 

Features

BBC © 2014 The BBC is not responsible for the content of external sites. Read more.

This page is best viewed in an up-to-date web browser with style sheets (CSS) enabled. While you will be able to view the content of this page in your current browser, you will not be able to get the full visual experience. Please consider upgrading your browser software or enabling style sheets (CSS) if you are able to do so.