Presumed consent: the debate

Fervent debate has followed the announcement by Health Minister Edwina Hart last Friday that Wales could move to a system of presumed consent for organ donation.

Jonathan Morgan AM has voiced his concern over the announcement. This is what I said in response:

“We recognise that the introduction of an opt-out system would be a controversial decision, and as such those who do not want to donate their organs will sign up to opt out. A law on presumed consent would, at a single stroke, save lives whilst still giving the individual the right to have a choice.

“Given the very high level of support for organ donation expressed in repeated surveys it is reasonable to presume that those who die without making their views known are in the majority who want to donate, rather than the minority who do not.
“Presuming consent rather than presuming objection is more likely to achieve the aim of respecting the wishes of the deceased person.

“We believe that with further debate and information about the way such a system would operate, there will be widespread public and professional support for such a change.

“The gap between the number of organs available and those needed continues to grow, with around 1,000 people dying each year in the UK waiting for an organ.

“We must recognise that the current system is unable to meet the increasing demands placed upon it. Steps must be taken to increase the availability of organs for transplantation.

“Let’s show that we still care deeply about the health of our nation and that we are willing to lead with bold initiatives whilst other countries dither and waver.”

I’m looking forward to hearing Jonathan’s response.

We will continue our work with the Welsh Assembly Government and other partners over the next few months to raise public awareness of the urgent need for change and the rationale behind the presumed consent option. You can expect to hear a lot more from us on this important issue.

What are your views on the announcement?

HIV Related Discrimination by Healthcare Professionals

I’ve just got back from the Assembly, where Dr Tony Calland and I gave evidence to the Equality of Opportunity Committee on discrimination against people living with HIV by healthcare professionals.

This by its very nature is a difficult issue.

But it’s compounded by the fact that there is no real evidence base in Wales from which to work from – at the moment the evidence of discrimination (by doctors and other health care professionals) is anecdotal.

And therein lays the problem. This lack of comprehensive evidence base is what the committee is working from; and as Jonathan Morgan AM points out they well struggle with this particular inquiry.

Advances in medicine and the ‘normalisation’ of how the HIV virus is treated have challenged much of the stigma previously found in healthcare settings.

That is not to say that discrimination is not occurring. I accept that unfortunately it may well be.

As we said in our paper, discrimination of people diagnosed with HIV by any healthcare professional is unacceptable, and is a breach of fundamental human rights – rights that are central to the practice of medicine.

Discrimination - whether actual or perceived - has a negative impact on health outcomes, and contributes to both a reduced use of prevention services and perhaps a higher rate of onward transmission. I suspect, however, that this point is obvious to most people.

Surprisingly perhaps, what’s less obvious to many people is what actually constitutes stigma and discrimination – and the effect that it can have.

Any drive to combat this should be directed at the whole healthcare team (managers, doctors, nurses, receptionists, social workers, clerks).

Non-HIV specialists may feel a lack of confidence in treating HIV patients – even if they present with common complaints. I would argue that for these clinicians, a tendency to refer HIV patients to specialist clinics or consultants arises from a lack of specialist knowledge and a desire to do right by the patient, to ensure they get the right care, rather than a reluctance to treat HIV patients on the basis of prejudice or discrimination.

This applies to many other conditions, such as diabetes and cancer, not just HIV.

It’s also important to remember that clinicians employ universal cross contamination measures for all patients (e.g. see 1000 lives campaign), because every patient could potentially have, for example, a blood borne virus or transmissible infection and are so far undiagnosed.

Precautionary measures which may seem to be over-the-top are often standard clinical practice.

A lack of knowledge about HIV, and misconceptions about onward transmission, fuels stigma and discrimination. As Dr Calland told the Committee this morning – ignorance may be the problem not prejudice.

I will follow the Committees inquiry with interest, and in the meantime we are planning to meet with the various organisations and representatives in Wales to see how we can improve on this agenda, jointly.

Disorganised reorganisation?

I couldn't agree more with the views of Welsh Conservative Health spokesperson and Chair of the Assembly's Health Committee, Jonathan Morgan about proposed structural changes to NHS Wales.

We were told by the Minister that the second-stage consultation would be published in the Autumn. It's nearly October and we still don't have it. As for these changes being in place by April 2009. That seems far too optimistic as every new day passes.

BMA Cymru Wales has been very clear, structural changes must result in better services for patients and more resources targetted at frontline services. We believe that in order to achieve these ambitions doctors need to be involved in the discussion on these reforms at the highest level.

We await Edwina Hart's statement with interest ...