Transfers

At the end of October, I wrote a brief entry about the Bliss Baby Charter, and said I'd return to it at a later date. Well just over 3 months after that, I guess this is a 'later date'!

For me, one of the burning issues in neonatal care is transfers, which is covered in Charter 3: Babies receive the nationally recommended level of specialist care in the nearest specialist unit to the baby's family home.

Within this, the charter requires trained specialist staff in multidisciplinary teams, near to home and operating consistently across a network. This isn't really too much to ask for is it? After all, it is pretty much what adults would also expect when they have a need for specialist medical care.

It is remarkable however, how often these objectives are not met. In particular, the provision of care 'near to home' is difficult for people to receive. There are many reasons why people are transferred, some quite legitimate, for example, transfers to a hospital that can provide higher levels of care, care for very premature babies or provide surgery.

Where things start to become unacceptable though is where it is purely a capacity issue and babies are transferred often many many miles from home simply because there is no cot closer to home. In a recent poll on the Bliss website (admittedly, this wasn't a scientifically rigorous study), nearly 20% of respondents were transferred between 50 and 100 miles, with more than 10% transferred over 100 miles. Some babies were transferred 140 milesor more, in one case 146 miles from Aberdeen to Glasgow, for a stay of 25 weeks! Even shorter transfers however can be traumatic, when it means a transfer further from home. Clearly the care of the preemie is paramount, and so where medical need dictates, transfers are fine. In other cases though, they risk:

• Stress and other impact on the baby during transfer and change of surroundings
• Transfer to a hospital where medical staff do not know the baby and its history as well
• Less frequent visits by parents due to extra distance and less time at the cot-side
  
• Less frequent visits by siblings
• Less frequent visits by other friends and family
• Stress to parents due to extra travel, unfamiliarity, less time with baby
  
• Increased time that parents and other children are apart during visits to visit the preemie
• Increased travel for already exhausted parents
• Increased travel costs
• Increased food costs, or poorer nutrition
  
• Reduced opportunity to establish breastfeeding
• Frustration with medical staff who don't know the background of the baby
• The risk of subsequent out patient treatment being either at the same far flung hospital, split amongst several hospitals or simply lost 'between the cracks'
• A new unit to become familiar with, and a change of routine

All this in what increasingly is being described as 'family centred care'! It often makes it worse when staff who have clearly seen it all before just don't see what the big deal is - to them it is just another day. There is also a point here about the consistent operation across networks. We know of families who managed to avoid transfer, and indeed there were respondents to the poll on the Bliss website who were able to beat the system. This isn't sour grapes and I'm genuinely pleased that people are able to stand up to the medical institution and overturn decisions, with babies that were on their way out being able to stay. There is also often poor communication on transfers, in terms of why they need to happen, how they will happen and also when they are likely to happen. Parents are often left feeling that they have no say in the decision. Ok, realistically they probably don't, but there is little discussion or communication with parents.

Finally, what must be the most stressful type of transfer is the multiple transfer, either being passed from pillar to post (and often back to the same post or another one!) or where multiple births are split up and sent their separate ways, often with mums still in-patients in hospital #1.

Clearly there are instances when transfers are absolutely necessary and all parents who are able to bring their baby home are enormously grateful, regardless of the distances travelled. But it would be good if transfers could be better planned, along the lines of the Bliss guidelines. Notably:

• Better communication with parents about the reasons for a transfer
• Transfers only when absolutely necessary for medical reasons
• Recognition that within family centred care, the parents and siblings should also be considered in addition to the non-medical impact on the baby (ie stress)
• Better communication with parents about the new hospital - car parking, visiting hours, NICU protocol (should you bring your own nappies, is there somewhere for valuables, when are ward rounds etc)
• Recognition that whilst networks are a good idea in general, there are instance where people living on the boundaries will be transferred to a hospital further from home even if transferred back into their own network (ok, I sneaked that in from personal experience, but we can't be the only ones that happened to)
  

First Commercial Sponsor!!

I have my first commercial sponsor! I spent the weekend writing letters to local companies explaining what I was doing and asking for sponsorship. I was reasonably selective about the companies I approached. I wanted to at least have heard of them, and ideally to have used their services in the past, the more the better really as I think it's important that this isn't just take take take. So, imagine my delight when the first company to respond was the best curry house in Saffron Walden, The Mogul! I frequent this reasonably regularly either for takeaways or nights out with the boys (good evening to CT United FC and the BBCC!!) and they already do a lot for local charity and local sports teams so it's great that they were happy to support me. They have also suggested I go back with a bucket on a Friday night to collect donations from the customers.

Many thanks to all at The Mogul, and I'll see you with CT United on Friday week!

A landmark!

In the grand scheme of things, it's only just over half the distance of the furthest ride we'll be doing on C2P. Today however, was somewhat of a landmark in that I did 50 miles for the first time. Actually, I had to divert because a road was closed, so it was more like 57 miles. Quite a nice route in rural Essex, Dunmow, Hatfield Heath, back up through Harlow and Stortford before a diversion around Stansted and on home. My legs feel pretty shot, but it has been a great week's training, with around 110 miles covered.


I set off today in cold but dry and bright conditions, experienced sleet and came back under grey skies. Overall the weather wasn't as bad as it has been - perhaps nicer weather is just around the corner..?


Nigel's Training Lore #5.
Not all gels and bars are born the same.Try them in training so you don't find out you don't like them/they don't agree with you during your real event!

[I tried a new brand today and suffice to say they were horrible! I'll be sticking to the ones I know in future!]

Cake a Difference

You may be aware that this week is Cake a Difference week. Each year Bliss does some fundraising around Valentines Day, normally 'Kiss for Bliss'. This year, it is Cake a Difference. I write this as my last batch of cakes are cooling prior to being iced up and sold at work tomorrow, all proceeds to Bliss, via my cycle fund.

Go on, you know you want to!

[UPDATE: £50 raised. Thanks all!]

Prevention and cause

Recent news reports stories have reported on both the causes and prevention of prematurity.

Firstly, the causes. The causes of prematurity are not well understood with multiple factors thought responsible. For example this paper suggested infection, vascular disease, maternal BMI, cervical length and previous history of premature births could all be risk factors. Equally, another paper recently reported no evidence for the efficacy of antibiotics as preventatives for premature birth. As reported by the BBC news, and a host of other news sources, however, recent work has strengthened the case for infection playing a vital role in prematurity. Following on from research undertaken by Imperial College London last year which found a link between a protein that causes inflammation in response to infection and prematurity, a group at the National Institute of Health in the US has now linked a particular gene to the story too. After studying the genes of woman and babies in Chile, the researchers have identified genes that are found in proportionately higher numbers in women and babies experiencing premature birth. The genes are linked to inflammation as a result of infection and from a evolutionary point of view are thought to be involved in life preservation (particularly from the point of view of the mother) when infection is present. The next step is to now develop tests to identify the presence of the gene (or protein) in order to pre-empt the inset of premature birth. Further down the line, perhaps even intervention to prevent the inflammatory response could lead to reduction in the likelihood of premature birth.

Closer to coming to fruition as a preventative approach, maybe, researchers at Yale have also recently reported that the use of progesterone can reduce the likelihood of premature birth.Working on the hypothesis that many premature births are a result of premature rupture of the foetal membranes, the researchers have determined that progestrone is able to reduce the rupture and thus potentially could reduce premature birth. Whilst still being explored in the lab, this is nevertheless an interesting piece of research.

Another recent report on work also funded by the NIH reported that Vitamin D could help to reduce the occurence of premature births. The study investigated the rate of early births between a high vitamin D dose group and a control group taking more like the current recommended dose of vitamin D. Premature births in the high vitamin D group were less than half that of the control group.

Please note: This blog does not suggest all expectant mothers should rush out and consume large quantities of vitamin D - please see your doctor!

A good week

Despite being the US again this week I managed to get some pretty good training in. I managed a twenty miler on Tuesday before I went, a few miles on the treadmill to get the flight out of my legs on Wednesday night (about 1am GMT!) and 12 miles on a LifeCycle on Thursday morning.

This was then the first week of back to back rides on Saturday-Sunday, with 22 miles on Saturday followed by 34 on Sunday. Being away in Derby for the weekend allowed a change of scenery, with a circular route out to the town where I went to school on Saturday and an out and back into Derbyshire on Sunday.

We reach a milestone this coming weekend, with a 50 miler planned..!

An icy slog

My heart sank when I awoke to snow again yesterday. Snow + ice + Nigel on a bike = another crash! But not today, thankfully. After my last two crashes, today was the first time I didn't fancy it. It was cold, icy and I had 45 miles to get through!

As it turned out, it was a great ride. A little tentative in places where it was still icy, but a nice route around Essex, through Cambridge city and back out into rural Suffolk and Essex. With the slight wrong turning it came out at 46 miles, and took 3 hrs. I also managed to finish feeling much better than I did last week, with a combination of a couple of gels and a bar bringing me home. Feeling tired now, but hey, I just rode 46 miles! Each new distance is the furthest I ever cycled now, with 50 miles the target in a couple of weeks...

Weekly training update

I don't often talk about my midweek rides as they are typically either just to work or a quick jaunt locally. A two day training course based at the historic Wadenhoe House however, gave me a great chance for a change of scenery.


6.30am. It was cold, misty/drizzling and very very dark. As I set off from the tiny Northamptonshire village, the only light source was the silver disk of light thrown off from my headlight. Very quickly though my senses adapted and it was a truly enjoyable ride! It is amazing how quicky your senses adapt to the surroundings, and as I passed through Oundle, which was a relative hive of activity with streetlights, people and cars, it was almost an assualt on my senses! I passed through quickly and continued on my way, as far I think as Polebrook, around 14 mile round trip, arriving back as it was just getting light.

My long ride this weekend was much less eventful than last weeks epic! 40 miles through Essex in around 2.5 hours. All went fine until the last 30 minutes or so when my legs started to feel really shattered, a case of insufficient energy on-board I think.

Nigel's Training Lore #4.
Over 2 or so hours in the saddle burns lots of energy - ensure you take on extra in the form of bars, gels or drinks.

Book review

I've just finished reading a great book which may be of interest. Discovery Road, by Tim Garratt and Andy Brown tells the story of their trip across the southern hemisphere continents of Australia, Africa and South America. It's a great read, with a very relaxed style taking the reader through the build up of the adventure (why a teacher and successful city boy felt the need to chuck it all in and go around the world on two wheels) and the trials and tribulations the encountered during the trip.

The book isn't just a list of countries successfully ticked off however, or a handbook for cycling geeks. The authors (who take in turns to narrate a chapter) discuss the history and background of the places they visit, describe the people they meet and combine it all with a sense of humour that keeps the story moving. What come across powerfully is the humility of the two riders. The ride was done for Practical Action, a charity involved with projects in Africa and Latin America (amongst other locations), and the lads did divert to go and visit one of the projects. They also see themselves as two ordinary guys who nevertheless did a very extraordinary thing.

The book is a great motivator to get you out and get some miles in, and also did a great job of summarizing the authors philosophy, which also sums up very nicely why it is that I and my wife continue to be active for Bliss...

In fairy tales there is always a call to action, the hero responds and overcomes all obstacles to bring benefit to him or herself and to the wider community. The dragon is killed, the town is saved, the Princess won.

This is your call to action.

I urge you to get out there in your world. Take responsibility for life. Take action. Have real experiences. Make lasting difference to at least one person. Create change. Kill the dragon.

Reprinted from Discovery Road, published by Eye Books. If I am not allowed to put that up here, please let me know and I will happily remove it.

Reality check

It's time for a reality check. Everyone who has experienced life in the NICU with a premature baby knows about the frustrations...insufficient staff...transfers miles from home...concerns over the state of the equipment...getting the correct medication at the correct time...I needn't go on. It all pales into insignificance though, when premature baby care in the developing world is considered. Currently in Haiti for example (as of Jan 17th), there appeared to be one hospital only. Setup by Israeli aid, the hospital does include incubators for preemies, but clearly the facilities are limited. [Update: 20th Jan. Haaretz.com is reporting the delivery of a preemie in Haiti by Israeli medical staff, in addition to the treatment of another sick baby]

The March of Dimes has donated $100 000 to UNICEF for mothers and babies in Haiti.



Even without terrible earthquakes, the developing world is a bad place to be a preemie. A recent report by the March of Dimes and WHO estimates that 13 million premature babies are born each year. An astonishing 11 million of them in Asia and Africa - compared to around half a million in each of the USA (incl. Canada) and Europe. Globally, the rate of premature births is increasing (reasons are not entirely clear, but include assisted reproduction, increased age of mothers, earlier Caesarians and in Africa, the lack of drugs to treat infection during pregnancy and drugs to prolong pregnancies), and starts at a higher rate in Africa (approx. 12% of all births, compared with 6% in Europe).

Perhaps not surprisingly, in addition to the higher rate of premature births, survival rates are lower in developing countries, partly due to the greater prevalence in general of diseases such as malaria, but also due to the lower levels of care available. For example, as reported in the East African paper, whilst babies born at 32 weeks in developed countries stand almost as good a chance as term babies of survival, those in the developing world stand little chance of survival.

As I have said many times on this blog, we are incredibly lucky. We had a premature baby born in the UK, endured a 3 month 'nightmare' in the NICU of two well equipped (by global standards) hospitals and brought home our little fella close to his due date. He will always be a preemie, but on the whole, he is now a happy little 2 year old boy and gradually is leaving consultants behind. I know others aren't so lucky and you truly have my admiration for how you continue to cope. In the grand scheme of things though, the NHS or the US health system doesn't do bad.