NHS public consultation – a rant

You may or may not know that the Department of Health currently has an ongoing public consultation around this Government’s mandate for NHS England. However, this ‘public consultation’ has so far not proven to be very public, until the press recently got their hands on it. Turns out, if you want a say, you’ve now only got two days to do so. Perhaps there’s a reason the consultation has been so well hidden?

The end of the consultation document offers the reader a chance to voice any complaints to the Department of Health’s ‘consultations coordinator’, so the poor soul received this rant via email:

“Dear Consultation Coordinator.

I am extremely disappointed in the publicity around this consultation. If were not for scathing media articles, it is doubtful that even a minority of the public would have known that this consultation was happening. As it is, the few who have eventually found out will only have had a couple of days, at most, to put together any kind of response. In short, this consultation has not represented the views of the majority of the public and is therefore undemocratic. Whatever comes out of the consultation will be a starting point, but it will never constitute anything meaningful enough to count as public involvement in the aims and running of the NHS, let alone transparency. Any future attempts to justify government decision surrounding the NHS with platitudes around ‘public consultation’ will therefore be completely unfounded, even though they will doubtless occur.
On a more practical point, the document itself needs to be written in a more understandable fashion. Please less management speak and more plain English – phrases like ‘key deliverables and metrics’ and ‘outcome frameworks’ are not helpful; even if it is not known exactly what something is going to be or how something will be achieved, be more specific and say so or describe that uncertainty in plain language! Management speak turns people off, they won’t want to read on and it’s a waste of time and text.
Next time, please do the whole process properly! How many efficiency savings could be made by not doing poorly publicised, confusingly communicated public consultations which will reflect a small minority view and then be used to justify large-scale change of a publicly-funded organisation. You’ll have to hope that, for once, an undemocratic and wasteful process has been made less so by the slating it has received in the media. Next time, please don’t rely on irony as your main source of publicity.


I hope they listen, but I’m not holding out much hope.

Here’s to the next consultation eh?

World Prematurity Day 2015

Last World Prematurity Day I started up this blog and, although it’s tailed off a bit over recent months, I’ve enjoyed writing it when I’ve had time and I hope it’s been helpful to people. The first post is still one of my favourites and reminds me what World Prematurity Day is all about. Now it’s World Prematurity Day again, here’s a reminder about why I started doing this in the first place.

What is World Prematurity Day? Well, put simply, it’s an international awareness day for premature birth. Around the world 1 in 10 babies are born prematurely every year. That’s a huge number of traumatic events for both babies and their families – having a premature baby is one of the toughest experiences any parents may have to go through. According to the WHO, premature birth is now the leading cause of death worldwide for children under 5.

This is a subject close to my heart. 25 years ago I was born extremely prematurely at 23 weeks but am now fit and healthy. I campaign for Bliss, the national charity for the newborn in the UK, and voluntarily attend various NHS groups and meetings as a parent rep to put across the views and experiences of parents and families who have had a premature baby. In the year since I started this blog, if you like the year between two World Prematurity Days, a lot has happened with all this work.

Since January I’ve become involved in public and patient involvement in research, mainly through the NIHR (National Institute for Health Research – the ‘research wing’ of the NHS) and an organisation based in Manchester called the North West People in Research Forum – https://twitter.com/nwpirf. When born prematurely in 1990 I was lucky enough to be enrolled in a drug trial for a substance called ‘artificial surfactant’ which helps the lungs of very premature babies to function properly, so I have always been a keen advocate of medical research. This work seeks to better involve patients and the public, with their first-hand experiences of healthcare, in the design and reporting stages of research projects, working with researchers to put together novel and effective research studies.

From a campaigning perspective 2015 has been a good year, especially on the NHS front, and I was very grateful to be awarded a ‘Making a Difference’ award for campaigning from Bliss. The various public speaking engagements I’ve undertaken this year have been great from a point of view of raising awareness around premature birth and hopefully encouraging people to strive for change in the NHS.

The biggest effort of recent months has undoubtedly been a recent project which I have just finished. If last World Prematurity Day saw my first published blog post, this one sees my first published book: ‘Boxes, Bubbles and Babies: A little history of medical progress’. This looks at the history of medical care for premature babies over the past century and more. Inspired by my own experience of receiving the surfactant drug shortly after my very early birth, I did some historical research both into the drug and the wider history of medical care of premature babies. Having done a degree in Physiology, and having lived in an era of ‘modern medicine’, I was under the popular impression that highly successful treatments like the surfactant therapy which helped me were straightforward products of science and medicine.

But the history tells a different, far more interesting story of medical ups and downs and human struggles in an era of uncertainty. Going even further back, a hundred years ago things were very different. For instance, the place best suited to caring for premature babies was not a hospital but a New York fairground attraction, an ‘incubator baby’ exhibit run by a maverick doctor and visited by paying members of the public! More than a mere freak show, the new technology of incubators, a team of highly trained nurses and a free care policy for all premature babies made it highly medically successful. You can find the full story of incubators and premature baby care in the book which I hope will help to raise awareness of both premature birth and medical research.

Today, please join me in sharing your support for World Prematurity Day and remember all those affected by premature birth around the world.  Thank you!


Science, communication and the media

Plastered across internet news sites, newspapers and social media today is the apocryphal message “You can catch Alzheimer’s”. This stems from an article published yesterday in Nature which pertains to a scientific study describing the possibility of Alzheimer’s being passed on from person to person, only under rare and extreme circumstances such as the contamination of brain surgery equipment. Even then, as an eminent neuroscientist points out in the article, the study’s authors “(they) fall short of providing the final proof of this”. Under no normal circumstances, and many rather weird ones, could you ‘catch’ Alzheimer’s from anyone! How, then, does this largely theoretical and not yet fully proven discovery make it into the international press as a fully blown scare story?

The importance of communication in science is never made more obvious when the mainstream media become involved, as the likes of Ben Goldacre have frequently attested to in great detail. Is the problem poor communication on the part of scientists and the editors and writers of scientific journals like Nature, or is it poor quality, lazy and exploitative journalism by ‘the media’, largely the newspaper press? In reality, it is a bit of both. A report by the BBC, cautiously entitled “‘Transmittable Alzheimer’s’ concept raised”, carefully and sensibly laid out the findings of the study and analysed the situation with the following astute observation – “Perhaps research papers like this one should come with their own health warning: “may cause unnecessary alarm”.” Unnecessary alarm that the press can happily make the most of. This raises the question, could and should scientists and publishers do more to ensure clearer communication in the first place?

Now, don’t get me wrong, from a balanced, scientific point of view and for a sensible, lay scientific audience, the Nature article is a fair and balanced report of the studies findings in understandable terms. However, the inherent ‘ifs, buts and maybes’ of the article, calmly and calculatedly placed as befits the style of ‘science writing’, are obvious enough to those used to looking for them. But for those not well versed in scientific prose, or those willing to overlook its subtleties (perhaps reporters eager for a story), the Nature article presents many a tasty morsel to be snapped up whilst the qualifying uncertainties are tucked away in cosy sub-clauses. For instance, “- and new results imply that humans, at least in one unusual circumstance, may not be an exception”, mentions the unusual circumstance only in passing and slots in two stalwarts of scientific uncertainty, imply and may with a deft sleight of hand.

Part of the problem is also down to perception. For many members of the public, when scientists write things like “may not be an exception”, “not an exception” is what invariably gets read. Similarly, a brief quote from neuroscientist John Hardy in the Nature article reads: “It is potentially concerning.”; to some of the public, familiar with ‘science’ only through Hollywood, this means that all Hell is about to break loose. Should scientific papers, or at least published articles in journals aimed at a wider readership, such as this example in Nature, come with a ‘health warning’, a plain English, media-proof statement that explains what something actually means in practical terms? From this example, yes seems to be the answer.

This is a solid, and certainly interesting, basic science study, but it is just a starting point for other research to build upon, as its authors state. So what would its two-sentence media health warning be? A good starting point would be to paraphrase the Analysis section of the BBC report linked above:

“… the findings are interesting and important for furthering understanding… they must be interpreted with caution… There are too many ‘ifs’ to draw any firm conclusions… The observations are from a small number of deceased patients who had a treatment that hasn’t been used for years… Although it’s still not clear exactly why some people develop Alzheimer’s while others do not, experts agree that you can’t “catch it” like a cold.”

Such a statement not only helps readers, and reporters, by setting some the subsequent article’s ambiguity into the context of its reality and not just its theory, it also provides a bulwark against sensationalist journalism. It is far easier to accuse a newspaper editor of irresponsible journalism if their paper proclaims “You can catch Alzheimer’s” after reading the summary and the article than after reading the article alone. Introducing such summaries would also help science and scientists look a little less naive when it comes to communication and the media. Sensational headlines and stories don’t just scare people unnecessarily, they also belittle the genuinely interesting science that is still in there, waiting to be talked about.

Improving Communication for Neonatal Families When Making End-of-Life Decisions

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Headspace Perspective

The Royal College of Paediatrics and Child Health has today issued new guidance about “when it can be considered no longer in the best interests of the child to give life sustaining treatment.”

The new guidance has received prominent coverage in the national media, such as this article in The Telegraph.

Discussing not just the death of babies and children, but withdrawing treatment that prolongs only suffering and the inevitable is an emotive and challenging issue. I believe every child is valued and has a right to life. However, despite significant advances in medical technology some children, especially babies born extremely prematurely, will not survive despite extensive medical intervention. It is something that deserves more open discussion for the benefit of those directly affected by such impossible decisions.

As regular readers of my blog will be aware, the focus in the media of premature babies ‘success stories’ can lead bereaved parents to…

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Public and Patient Involvement in Research

Unfortunately the latest line of work that I’m dipping into is known by an alias that has seen many telephones mercilessly dismembered in homes and offices across the land: PPI. Thankfully, however, in this case it does NOT stand for payment protection insurance, it is actually ‘Patient and Public Involvement’.

This covers a wide range of activities, some of which I have already been involved in for a while, such as representing the views of patients at NHS Special Interest Groups. Being a patient rep at often largely clinical meetings allows you to put across a patient perspective to health professionals, usually doctors, to help inform the overall decision on a particular healthcare topic. Any patient with an experience that they wish to share can apply to become a public member on any suitable group – this page gives an idea of how to get involved – and this work offers real insights into both the day-to-day and deeper workings of the NHS.

As rewarding and interesting as this work undoubtedly is, the newest strand of PPI that I have become involved with is the one that I am most excited about. Patient and Public Involvement in research is currently centred around health research and aims to get patients and researchers working together to determine many aspects of current and future research projects, the emphasis being on patients’ experiences and recognising that these are extremely valuable when deciding upon the direction of a piece of research. PPI in research isn’t primarily about educating or engaging patients, although this often helps, it is about getting them to actually be involved in the research – to help with ‘the science’ if you like. Usually this covers helping the scientists decide what to investigate, or perhaps how best to investigate it when interacting with patients, or even presenting the research findings in a public-friendly manner: all the practical stuff, scans, chemicals, tests etc., stay in the hands of the scientists. If you think this is for the best, you have to remember that some scientists are clumsy, absent-minded people like me, capable of knocking over 2 pints in an hour when sober before forgetting that they’ve left the third one they’ve just bought at the bar, and are free to roam science labs on a daily basis.

Seriously though, getting the public meaningfully involved in research is great. Not only will scientists and scientific research benefit from their input, science is always in need of fresh ideas and should welcome alternative perspectives at every opportunity, but the public will learn more about what science really is too, they will see beyond the mysterious graphs and machines, the stereotype of lunatics in white coats will be broken (most scientists don’t bother with the white lab coats, they’re a nightmare to get tea stains out of). More importantly, especially with health research, a significant proportion of medical research studies are at least partially government-funded, that is paid for by most of us – it’s only right that we should have a say in their aims and operations, especially if we also happen to be patients who may be affected by their outcomes.

The People in Research website contains a database of nationwide PPI research opportunities and is the first port of call if you would like to become involved in a relevant research project. Health research is the most obvious, and perhaps most important, area of research for PPI to have an effect, but I would like to see it slowly expand to all corners of academic research, however dusty and dank they may be – even the dustiest corner of highly specialised study can be funded by public money. Having attained a Physiology BSc and an Archaeology MA, I’ve done research in both the sciences and the humanities, sampling both sides of the so-called academic divide. Archaeology is a subject in which the public often gets involved, in community archaeology projects an army of volunteers inevitably descends upon the latest site to dig up and analyse fragment after fragment of their local history, a history thay they become passionately involved in and that they have been a vital part in unearthing. This is not just physical it is also intellectual, the archaeologists may be the experts at identifying bits of pot or putting a date to this or that, but the real intellectual work lies in the interpretation which, often as not, is a playing field open to all ideas. Why not get the interested public involved in discussing the theory too?

PPI in health research is growing fast and now more and more research funding bodies require proposals to be put before boards containing public reviewers who judge the potential studies on equal footing with the scientists and ‘experts’. As any scientist will tell you, scientific experience is a very different thing from real-life experience, something that research is often in need of, if not searching for. My hope is that one day these same principles, borne out of concerns for public health and the efficacy of public health research, will apply across academia so that researchers and the public interested in absolutely anything will find themselves able to converse and debate the details of projects on a more equal footing. For now, this is still only a future, but is a future that I will do my best to see realised.

Different experiences: Alana’s perspective

As promised yesterday, here is the second-half of the two-way ‘interview’ that Alana and I have contributed to. Alana is a mother of twin toddlers, Madeleine and Reid, who born prematurely at 25 weeks; she can be found on Twitter @alsoalanaromain. She was interested in my experience of life having been born prematurely, which you can read here on her blog Rockstar Preemies, and I wanted to know about her experience of having premmie twins. I’m very grateful to Alana for sharing her and her family’s experience.


There is evidence to suggest that twins are more likely to be born prematurely than singletons, did this ever cross your mind or was it mentioned to you when you found out that you were expecting twins?

I knew about the risks in an abstract sense, but in my head I thought, “well, plenty of people have full-term twins!”.  I remember hearing at one point about a friend-of-a-friend giving birth to her twins at 34 weeks, and I just thought, “oh, how terrible, please don’t let that be me”.  Of course, now I look back and think I would have done anything to make it to 34 weeks!

 I cannot imagine the shock of suddenly finding yourself in NICU with twins. For those of us lucky enough not to have experienced such trauma, can you even begin to describe what it is like?

It is kind of beyond comprehension, even while you are going through it. The day I gave birth, I was taken down to the NICU to see Reid and Madeleine for the first time, and it was the greatest, most heart-exploding moment, while at the exact same time being completely earth-shatteringly terrible.  They were so small, couldn’t open their eyes, couldn’t breathe on their own, looked so sick and frail and sad, and I wanted to scream and cry and do anything to fix it and yet at the same time I honestly thought they were so beautiful and I felt like the luckiest human in the world that they were mine.  I think that sums up what the NICU experience really is – feeling the most intense joys and fears and sadness simultaneously, every day, while also kind of becoming numb to it because you have to figure out a way to wake up every morning and do it all over again.

Many parents in that situation say that they have no idea how they coped, they just did. Even if you felt the same way at the time, looking back now what advice you would give to parents who find themselves in a similar situation?

I absolutely think that all the time, “how did we manage that?!”.  I often think that getting through is a matter of turning off your brain as much as possible, or else it would be too overwhelming, and you need to hold it together so that you can be there for your child.

There is no easy way through the NICU, but my advice is always the same:  remember that nothing you are feeling is unusual or weird.  There is no right or wrong way to respond to your child being sick.  The NICU can feel isolating, but reaching out to other people who are supportive and who understand is valuable.  And remember that you will not be there forever, as hard to believe as that can feel sometimes.

Life in NICU is tough for babies, parents and families; not only are babies very ill, but parents cannot do many of the things that they were expecting to, like just holding their babies. How did this affect you all and what would you say to parents experiencing this now? 

It’s heartbreaking, but in some ways I find it more painful to remember those things NOW than I did at the time.  You really do end up compartmentalizing in the NICU to make it through the days, and so the “normal” parent things don’t even feel like they apply to you anymore.  But now, thinking about all the time I spent cuddling my children while they were attached to machines, thinking about all of the procedures and tests and surgeries, thinking about how we would have to leave them each night to go home?  It makes me cry to think about now, even though at the time it was just our daily life.

Compared with parents of singleton prem babies, do you think that the ’emotional rollercoaster’ of NICU was made more acute by having twin prem babies, or was it just a different experience?

I would imagine the feeling is the same – the same fear, the same questions, the same sadness.  The same desperate longing for things to somehow be okay.  The only time having two babies in the NICU was really an issue for us was when Madeleine had to be sent to another hospital for surgery, and when Madeleine was discharged home and Reid was still in hospital.  The back and forth, trying to give both babies equal attention…it was incredibly stressful, and was a very, very emotional time for me as a mother to know that I couldn’t be with both of my children at the same time.

(At the same time, I was lucky to have two relatively healthy babies come home at the end of it all.  Had we lost a twin along the way like many parents unfortunately do, I’d probably answer that question differently.)

Although the NICU is an incredibly stressful place to have to be, I’ve heard from many parents that coming home for the first time, albeit a joyful experience, can often be even worse for the first few weeks. Does this reflect your experience of bringing Madeleine and Reid home and first caring for them there?  

It is very scary to be sent home!  You get used to having the nurses to help you, and you get used to thinking about caring for your baby in a very specific way – measuring their feeds, tracking everything, giving meds, taking their temperature and blood pressure, knowing their oxygen saturation at any given moment.  I remember once asking a nurse what I was supposed to do when feeding the twins at home – how would I know how much to give them?  The nurse said, “well, if they’re still hungry, they’ll cry”.  That honestly hadn’t even occurred to me!!!!  They’ll just cry!  It’s as though you have to “unlearn” NICU parenting when you get home and adjust to being a mom like anyone else.  It is a very big transition to try and put your “NICU Mom” self on the shelf and be a “regular mom” instead.

There are many books on pregnancy, some several hundreds of pages long, but most contain very little information about the possibilities and realities of having a premature baby. Why do think this is? Do you think that such information would have prepared you any better?

I want to say it would have, but the truth is, I don’t think you can really understand the reality of prematurity until it happens to you.  A lot of people think preemies are just small babies, that they just need time to grow and catch up, but that really isn’t it at all.  Prematurity causes lots of problems, and babies die because of it.  It’s a scary thought, and as a pregnant woman, you don’t want to think about all the things that can go wrong.  Even though I knew I was having twins, and even when I knew I’d likely give birth early, I still didn’t really think about it.  It’s a coping mechanism I think.  You can’t really prepare yourself.

Lots of parents are blogging nowadays, including lots of parents of preemies, why did you decide to share your experiences with the internet and the wider world? 

There was actually a very specific reason!  When we first got the news that Madeleine had a brain bleed that could need surgery, I started Googling desperately, trying to find other stories of babies who had been through the same thing.  I found Life With Jack, and Jack had also had hydrocephalus and a shunt (this was before Maddie had her shunt placed) and I read his story voraciously – I just needed to know everything, so that I could begin to envision what our life might look like.  As we spent more time in the NICU, I realized I wanted to share our story in case there were other mothers out there up late at night Googling about their own preemies.  I wanted to help provide a resource for other parents who were as scared as I was, and to help try to normalize the NICU experience as much as possible (I think the only thing worse than having a baby in the NICU is feeling like there is no one out there who understands what it’s like).

Lastly, with Madeleine and Reid now growing and doubtless energetic toddlers, what do you think about the future? Do you think that the tough start you’ve all had will change the way you will bring them up compared to what (if any) plans for parenting that you may have had?

I think about the future all the time.  I hate to say this, because it sounds so negative, but I think the big difference is that, now, I know first-hand that bad things really do happen all the time.  It’s natural for parents to worry, but I definitely think I carry a lot of extra fears about something happening – waiting for “the other shoe to drop”. I see Madeleine and Reid thriving and healthy, and yet I don’t know if I’ll ever feel like we are out of the woods.  I worry about them going to school, I worry about their health, I worry about their development.  I always feel like we are one doctor’s appointment away from being given terrible news.  It is a constant struggle, because I don’t want it to affect the way they see themselves as they grow up.  I realize now that the trauma of something like an extremely premature birth is something that lingers with parents for a long time after the initial impact has subsided.

At the same time, I think I appreciate motherhood more than I might have if they’d been born healthy.  I know now that everything is a gift, every amazing moment is worth celebrating, because it was never guaranteed. When you get pregnant, you think you want to have a perfect baby, you are so afraid of something being wrong.  But when things actually DO go wrong, you come to a point where you realize that you’ll take ANY outcome so long as they are alive.  As much as I’d never wish my experience on anyone, I’m grateful that I was able to learn that so early on, because it’s helped me to see my children for who they really are, instead of some idea about who I thought I wanted them to be.

 Madeleine and Reid