BBC

It is no surprise that, in death as in life, Nelson Mandela has caused us to gaze upon humanity with warmth and optimism. I am sure I am not alone in having taken a great deal of pleasure from reading the celebrations of his life and reflecting on how different tomorrow would look were it not for him.

No more so than Sarah Boseley’s article  in The Guardian on Friday .  She deals with the way in which Nelson Mandela changed the HIV/AIDS agenda.   Her piece focuses on Nelson Mandela’s speech at the international Aids conference in Durban in 2000 – arguably a key turning point in the fight against the disease.  His words refocused the minds of warring scientists, activists and politicians, on tackling what mattered most: the human tragedy being played out on the African continent.

Sarah Boseley inspired me to dig out the text of his speech and here it is.  I hope you will find just five minutes today to read it.  Even on the page it is a beautiful piece of oratory. You can hear Nelson Mandela’s voice so clearly.

Two extracts struck me as particularly relevant to the discussions at the G8 Dementia Summit in London tomorrow:

“Now, however, the ordinary people of the continent and the world – and particularly the poor who on our continent will again carry a disproportionate burden of this scourge – would, if anybody cared to ask their opinion, wish that the dispute about the primacy of politics or science be put on the backburner and that we proceed to address the needs and concerns of those suffering and dying. And this can only be done in partnership.

I come from a long tradition of collective leadership, consultative decision-making and joint action towards the common good. We have to overcome much that many thought insurmountable through an adherence to those practices. In the face of the grave threat posed by HIV/AIDS, we have to rise above our differences and combine our efforts to save our people. History will judge us harshly if we fail to do so now, and right now.”

..and finally:

“The challenge is to move from rhetoric to action, and action at an unprecedented intensity and scale. There is a need for us to focus on what we know works.

We need to break the silence, banish stigma and discrimination, and ensure total inclusiveness within the struggle against AIDS; those who are infected with this terrible disease do not want stigma, they want love.”

I am not making a comparison between HIV/AIDS and dementia.  But Nelson Mandela’s words embrace eternal themes that are well worth remembering on the eve of tomorrow’s summit.

The G8 Dementia Summit programme was published yesterday and can be found here.  The website will also have coverage of the meeting all day tomorrow I believe.

My good friend, colleague, former carer to her mum, Peggy, and campaigner, Susie Hewer, has a piece on the dementia summit website about her own experiences with dementia and what the summit means for her here.

My previous blog on the G8 Dementia Summit can be found here.

BBC coverage of Nelson Mandela’s memorial service taking place in Soweto today is here.

The best advice I can give charity Boards of Trustees today is: lock up your chief executive because the Daily Telegraph is after them.

The newspaper known for its successful probing of MP pay and expenses is now taking aim at charity CEOs. Specifically it has gone for the heads of the charities that make up what is known as the Disasters Emergency Committee or DEC. DEC is more often than not heard of in the context of appeals to send aid in response to major intl emergencies. These are put out by the BBC and other broadcasters as you may well know.

I have mixed emotions about this morning’s story. On the one hand I fear that our charities are becoming more like businesses every day, far removed from their founding principles. Is this just another vestige of that trend?

On the other I feel immense frustration that society seems to expect my colleagues working for charities to dress in sackcloth and flagellate themselves every morning. At some point these last few years Britain has gone from a ‘keep up with the Joneses’ mentality (which was bad enough) to that in which we actively covet all that our neighbour until it has been taken away.

In such a febrile atmosphere such campaigns can have unintended and harmful consequences. The outcry over MP expenses was right and proper. But it has also stymied parliament and parliamentarians from receiving the resources they need to serve the nation well.

The head of the Charity Commission, William Shawcross made the only response he could this morning. Charities should be prudent and exercise appropriate controls on pay. Also that this is a matter for charity Boards.

In fact if you are really interested in asking the question of charities about whether they are well run or not then CEO pay is a blunt instrument. Better to examine the composition and behaviour of the Board, how it reflects its beneficiaries interests, how it reports and accounts for this in public.

But that probably sounds too much like hard work to the Daily Telegraph.

Nine in ten of us watch the TV at least once a week. The living room is the place where we most like to sit in front of ‘the box.’ And the majority of the programmes we view constitute live television.

So found OFCOM in its latest research of people’s media habits published two weeks ago.

The profusion of smartphones, tablets and other media technology has not displaced the special place TV holds in our hearts. No, in some ways, it has cemented it as we mash, mesh and weave the use of these things together.

Multi-tasking is what us civvies would call it. And only half the population are naturally disposed to it!

Whether you are the Chief Medical Officer, a jobbing scientist or charity press officer, the take-home message from the Ofcom report is pretty clear. Social media grows rapidly in importance but tv still commands people’s attention (even if that is now divided somewhat ). Getting our messages right so they land effectively with the Brit lounging in front of his or her tv is what it’s all about.

Debates about the role of broadcasters in communicating science, health research or developments in medicine tend to gravitate around the role of news programming. But TV and radio are often at their most powerful when conveying such subjects in the form of drama. They can grip public attention and literally heave an issue from relative obscurity to dump it at the door of No10 where it can not be ignored. Tony Harrison’s writings on dementia are a case in point. Informed by much research on his part if I recall rightly.

So when fact is fracked beyond its life for the sake of drama, where the resulting fiction does everyone a disservice, it should cause us concern. This, it would seem, is what has happened with a storyline on organ transplantation now running in BBC TV’s ‘Holby City.’

Last week’s episode – and I confess I have not seen it yet – has prompted a stiff letter of protest to the BBC from NHS Blood and Transplant (NHSBT). This points out the many inaccuracies portrayed in the tv soap about organ transplantation. NHSBT says some people have even withdrawn themselves from the organ donor register because of it. I can believe that having read some of the online comments to a related Daily Telegraph story. The BBC itself had received 48 complaints as of last week. This is a higher number than you think when you look at the complaining habits of the viewing public.

The BBC has responded that the programme wasn’t supposed to be accurate. Let’s give it the benefit of the doubt and assume that this is their press office not the producers responding. Also that it is August. On the other hand….

Although the BBC say they consulted their in-house medical experts, the NHSBT says that the concerns they expressed over various scenes before they were aired were not listened too.

Holby City but more so its older sister ‘Casualty’ – which used to be rather good before they began to administer so much adrenalin to their patients that ‘the cubicles’ resembled an 80s rave – have allowed their reputations to be partially built on their role in holding up a mirror to our health service and what is happening in it. Hence the topicality of their story lines – the transplantation one being a good example.

Trouble is the primeval impulse that has subsumed the media is to hype and embellish almost everything to the point where reality is no longer insufficient to satiate the viewer. Or so it feels.

Finally, the argument that people know these shows are made up does not ring true when you hear the accounts of TV soap baddies who have been abused by the public on the street.

Personally I think we all have a right to expect that a story which portrays a potentially real-life scenario should have a strong basis in fact. It might also help those who operate the support lines that broadcasters assiduously and helpfully set up to handle questions from the public after such shows are aired.

This is not the first spat and will certainly not be the last involving broadcasters and the dramatic portrayal of medical stories. So I hope that the BBC finds time to respond more responsibly to NHSBT and others than it has done so far. Or we will have to assume it has set the bar on accuracy just that little bit lower for the benefit of no one least of all its public.

One last thing. There is a BBC trailer at the moment which makes much of the fact that sometimes the most gripping stories are real ones. It’s a rather incongruous little insight into how broadcasters now view the world. Wasn’t it always the case that fact is often stranger than fiction?

We have had two pieces of good news about health research of patient benefit this week.

First, the National Institute for Health and Care Excellence (NICE) issued new guidance saying that tamoxifen or raloxifene taken daily for five years can cut breast cancer risk by 40%.  This means women at risk of developing breast cancer have a choice other than mastectomy. There is a good BBC news piece here if you are interested.

Then, this morning, the Chief Medical Officer Professor Dame Sally Davies told BBC 4′ s ‘Today’ programme that the government will be putting new regulations in front of parliament later this year that would give the go-ahead for what is called ‘three-person IVF’ to enable children to be born without genetically inherited mitochondrial disease.  Parliament is to be given a free vote when the legislation comes before it.  Ian Semple’s article in The Guardian today is a good summary.

Both are extremely important announcements.  Each has been accompanied by debate in our media about the pros and cons.  I am sure this will continue.  But more significant are the decisions these will enable families to take where, in the past, there has been little if no choice.  I can only imagine the sense of empowerment that brings.  However, we must be sure that people have the full facts and information in front of them when considering their options. Whatever their decision, they must also feel that their choice and the reasons underpinning it are respected by professionals, colleagues and friends.

In my opinion these feel like well-informed announcements from a patient perspective, developments that the public should have confidence in.

Quite apart from the fact that NICE’s decision is based on evidence from large-scale clinical trials involving thousands of women, you may wish to have a look on their web pages at how they reached their decision.  As with all its guidelines there was an extensive period of evidence gathering and consultation.  And it is worth mentioning that the Clinical Guidelines Group (CDG) that took looked in detail at this included three patients/carers among its membership.

In terms of the ‘three-person IVF’ move, this has been pre-dated by months of debate including an extensive public dialogue exercise run by the relevant regulator, the Human Fertilisation and Embryo Authority (HFEA).  You can see the results of this exercise led by Sciencewise and also the recommendations made by HFEA to the Department of Health here.  No, it didn’t say that everyone supported the idea.  But in what I thought was a very well framed document, it said that the overwhelming opinion to emerge understood the benefits from a societal and patient perspective.  And on this basis that such procedures could and should be licensed.

Seems to me that when asked, and given time, the public are rather good on this issue at blowing away the smoke that others are keen to blow into our eyes.

 

If I didn’t know from all the media coverage that the digital switchover was taking place in London today, then I would only have to look over my back fence into Crystal Palace Park to see them preparing for the laser show tonight at the Crystal Palace Tower.  It explains the weeks of helicopters hovering overhead at least, unless that was just our local criminal fraternity again, trying to escape the Met’s laser beams.

Some people are not happy about this milestone event in broadcasting history.  Take the  elderly woman whose son is quoted in the Evening Standard as saying: “Mum woke up to NO channels on TV this morning. She’s so angry with the digital switchover thing.” So, despite the promise of more channels and a stronger signal, more than a few will be bereft without their helping of Eastenders tonight.  And quite a few will be puzzled that that old trick of rubbing the back of the remote control to breathe life into those old ‘I must remember to replace them’ batteries is not working as it has done for years.

Healthcare is also going ‘digital’ but this ain’t no press-a-button easy peasy switchover type of event.  Nor will it garner the plaudits or be celebrated in the same way.  But the impact will be as momentous if not more so in terms of the impact on our lives and our deaths.

Digital healthcare is defined by Warwick Medical School as (take a deep breath first):

‘Digital healthcare concerns the development of interconnected health systems to promote the use and advancement of smart devices, new technologies, analysis techniques and communication media to help professionals and patients manage illness, enhance the performance of patient monitoring devices, improve clinical education, manage healthcare risks and promote wellbeing.’

In every conceivable way the patient’s experience in the future will be influenced by the march of the digital and it will manifest itself in many different forms: the application of medicines and treatment such as smart pills; the use of imaging and other technologies to diagnose and monitor our condition; the way in which data about our health and the way we use health systems is stored and can be used by ourselves and others whether for care or for research; online systems to aid clinical decision-making; not to mention the use of telemedicine or telecare  (take the Guardian poll here) to help better manage our condition at home and at work; the simple use of social media to connect, network find and share knowledge and experience in ways that were unthought of not so long ago or; the technology and information systems wrapped around personalised medicine.

No, this isn’t an easy switch-over but one great ‘mash-up’ of innovations.

The opportunities and potential benefits are clearly huge.  But there is also a risk that some patients will be left disenfranchised by the digital divide for one reason or another – an issue that the Society for Participatory Medicine in the US is taking up very forcefully  (see also its blog with none other than Ben Goldacre featuring in its latest post).  I am not sure that we have even begun to grapple with this agenda in the whole in the UK and I am thinking of ways we might go about it so please let me know if you have ideas.

In reading their materials I came across this rather energising interview with one of the leading lights in the Society, Dave deBronkart.  e-Dave as he is known, lays out some good foundations for changing the paradigm by which we consider the future patient in the digital age: giving people license to seek and be armed with information; using new media to enable patients to form communities including aggregating their views on what works and doesn’t; changing the language we use about all aspects of care (I liked his take that we should use ‘achievement’ instead of ‘adherence’ when talking about medicines); partnership and shared care (of course).  The opportunities for changing the old hierarchies seemed achievable once again on reading his words.

At the same time, swept along in this fervor as we are, there is also something about the need to hold onto the ‘personal’ to human contact.  It was not long ago that my Dad told me of a visit he paid to his new local hospital.  Instead of receptionists and people to guide, this state-of-the-art facility had an electronic sign-posting system for patients arriving for their appointments.  All very good, as even he admitted.  And very efficient.  But the triumph of the impersonal over the personal made his experience just that little less human.

 

Is it me or does anyone else think that No 10 could have perhaps chosen more wisely its choice of title for the new army of individuals who David Cameron says will help ‘trouble’ families: ‘troubleshooters’ doesn’t sound quite right?

This only a week after No 10 made a complete hash of the 24 hours of ‘trailed’ news leading up the announcement of the life sciences package.  All of which resulted in misleading headlines about animals, pharma and the such like.

Perhaps we should enhance that old actor’s adage: ‘Never work with children, animals or…[suggestions welcome]?’  More seriously, given the Government is so mindful about costs and impact, perhaps the money for this sort of announcement might be better spent next time asking the Science Media Centre to arrange the briefing(s).

On the subject of troubleshooting on clinical trials and as a follow-up to my previous posts over the last week about ‘research citizens’ and a ‘Health Research Ombudsman’ you might be interested in yesterday’s report in the United States by The Presidential Commission for the Study of Bioethical Issues entitled ‘Moral Science: Protecting Participants in Human Subjects Research.’

The Washington Post has a good summary and link to the report if you are interested in learning more.   The report follows revelations earlier this year of shocking abuse of clinical trials participants in Guatamela some 40 years ago. The report’s conclusions relate to both domestic and to international trials with US sponsors.

The report basically says that clinical trials in the US are safer than they have ever been but that they don’t really have the data or information to prove that statement beyond doubt including basic info about the trials underway themselves.  It then makes a series of recommendations for improvement including better ‘community engagement.’

As I read the report I reflected on the fact that whatever my criticisms are and will continue to be, we do seem to be more enlightened in the UK about public involvement in clinical research, the care and welfare of patients on trials etc.  Or perhaps I am just in a good mood because it is Friday.

By the way I seem to overhear something on BBC Radio 4 last night saying that Simon Cox was going to be looking at clinical trials in ‘The Report’ next week, the topical news programme which airs on Thursdays at 8pm…

 

The BBC’s Fergus Walsh wrote an excellent blog this week about the prototype blood test for vCJD (Variant Creutzfeldt-Jakob Disease). But there is another story implicit behind it that is worth telling – what has been achieved through the fortitude of patients and scientists working together in the face of insurmountable odds.  I can not do justice to that story in this blog but I offer some brief reflections prompted by my own small part in it.

The public health concerns and media storm caused by the Major Government’s announcement of a probable link between BSE and vCJD in 1996 are long forgotten by most now I suspect.  But they are etched on my memory.  At that time the Alzheimer’s Society ran the CJD Support Network which is now an independent charity.   It was not long after that, that the Network hosted the first ever CJD annual conference At Warwick University.  Scientists were prominent alongside the families of those affected by vCJD and I shall come back to this point in a minute….

Returning to that event, I was there to handle the media.  But I am under no illusions that the task was beyond me then.  My abiding memory of that event  was of one of my colleague being interviewed ‘live’ by a Newsnight reporter and camera crew whilst I was  cornered by a Daily Mail reporter intent on tracking if not hunting down one of the families.  What I would have done for the help of the Science Media Centre on that day to manage the powerful if not explosive combination of human tragedy, public fear and science at the edge of our understanding.

But, looking back, it also struck me how, at that time, when Government Ministers and many others seemed unwilling if not fearful of contact with the families concerned, those families and scientists at the CJD Surveillance Unite as well as elsewhere forged a strong alliance.  It would be wrong to suggest that it was always an easy or trusting relationship but it was nonetheless united in common purpose. 

If you search the annals of many medical research charities it is often this union between families and scientists and/or clinicians which lies at the root of the organisation and who develop the early momentum to carry it forward.  So it was with vCJD……or that is how I remember it.

The last and perhaps more obvious reflection is how the vCJD story highlights those old nutshells in the science debate – the importance of the UK having strengths in both basic and applied science, and the length of time it can take for science to bear fruits that have meaning for patients and the public.  The MRC Prion Unit headed up by John Collinge has been at the forefront of the vCJD story since 1998. 

It has taken over 10 years for it to develop the prototype blood test as announced this week.  But it is an important milestone.  I was interested in Fergus Walsh’s thoughts about the ethical implications of such a test being available. But also bouyed by his quote from John Collinge that human trials will shortly begin into a treatment that would prevent those incubating vCJD from developing the full-blown disease.