Welsh care

In a report mirroring the publication launched in England, Bliss yesterday launched its report on neonatal care in Wales. The report again featured the need for increased levels of nursing and also the need for improved transportation. As reported on the BBC website (but not on the Bliss site - why is that not kept more up to date?), there is money available for a 12 hour transfer service, in contrast to the 24 hour service available in England. This clearly increases the risk to the most vulnerable babies who need to be moved for improved levels of care as and when they need it, not to fit within a 12 hour work day.

Andy Cole of Bliss was quoted in the Western Mail (here) as saying “There have been 12 reports about neonatal care in Wales over the last 30 years and they have all highlighted a lack of specialist staff, the lack of a transport service and the lack of capacity. We have never seen the big step change that is needed and unfortunately in Wales, the country is even further behind other areas in the UK."

Preemies have the X-factor!

As you settle down with a bottle of wine and bar of chocolate tomorrow night to watch the X-Factor (what do you mean you don't?!), you may be watching two more potential celebrity preemie ambassadors in the making. Along with Phil and Julie Neville (who writes in Little Bliss magazine - including this article), and of course Kym Marsh, we now have...Jedward! The twins from Dublin were born 3 months early in the Rotunda Hospital. Whilst there is no indication that they are looking to be Ambassadors apart from this article that mentions their prematurity, it would be nice to think that they could use their new found fame in a positive way!

Jedward in action on the X-factor last weekend :o)
(picture from here)

Tonight program

ITV's Tonight (available on ITV Player until 9th December 2009) program this evening (9th Nov) discussed the issues around having a premature baby and also investigated the research into what causes premature labour in the first place.

The program was presented by Kym Marsh, who sadly lost her own son, Archie, who was born 18 weeks early. Our experience certainly can't be compared to losing a baby, but even so, knowing how I feel when revisiting the NICU even two years on, and discussing the experience of our 3 months in hospital means I have enormous respect for Kym. Along with other celebrities who make time to raise the issues of preemie babies, she is to be applauded.

In terms of the program content, it split into two areas, the issues surrounding preemies and the causes for prematurity in the first place. Many readers of this blog will be familiar with the issues; insufficient funds, too few nurses, transfers to hospitals miles from home - often splitting multiple births and mothers up. That said, it was good to see the issues being aired on a fairly well respected TV program. Also good to see Kym tackle Ann Keen the Health Minister. Having met Ann, I believe that particularly with her nursing background, she does care. However the promises fall flat without funding. she lost me in the argument over ringfencing money being a bad idea and was widely quoted last week during the taskforce report launch as saying that no additional funding would be available. Exactly where is 1 to 1 care going to come from then? No ringfencing, lots of other demands on NHS funds and an impending massive reduction in public spending. Hmm...

The section on investigating the causes of prematurity was interesting, as many of the people spoken to did not know the reason for their premature delivery (as indeed, we don't). The program reported on the work by Lucilla Poston looking into progesterone levels in saliva. This may indicate propensity to deliver prematurely, but I guess it is a long step from there to understanding the root cause, and from there to prevention. Still, in the name of this blog: Little by Little!

Further details of the issues raised can be found on the Bliss or Tommys websites.

Weekly training update

Much nicer weather this weekend! Bit chilly but nevertheless nice and sunny for another 25 miler through the beautiful Essex/Suffolk countryside. Helions Bumbstead and 'The Camps' provided the scenery this time. It's not half hilly when you have the perspective of a bicycle!

That's 25 miles closer to Paris...

Getting Chilly

Getting a bit parky out there now isn't it?! Good time then to report on the release of a new booklet from Bliss. The booklet describes common winter illnesses particularly from the preemie point of view. It includes illnesses such as RSV, pneumonia and bronchiolitis in addition to a section on swine flu. Each section covers symptoms, how to reduce risk when to seek help etc and so is a good booklet to have around.

With premature babies at high risk of readmission in the first year after discharge often as a result of things like RSV and bronchiolitis (our son was taken by ambulance to hospital on his first Christmas with bronchiolitis), it is great that Bliss is providing this booklet.

A memorable day

Was today the day that neonatal care finally got the recognition that it deserves a the support it needs to really make a difference?

Firstly, Bliss launched its annual report. A few days short of its 30th birthday celebrations, the report observed that in that 30 year period, many government led reports have been launched with the greatest intentions, but none of them have been completed. Reflecting on the many campaigns and initiatives throughout the years and undoubted progress as well, the report concluded with the main points from the strategy document as discussed here previously.

Secondly, the Department of Health released the long awaited findings of the National Neonatal Taskforce. The findings set out a framework for neonatal care in the UK and in particular requires the often asked for 1 to 1 nursing for the most seriously ill babies, improved care for high-risk pregnancies and a better transfer system between hospital.

This is all great news and certainly got good press coverage (e.g. BBC) as well Ann Kean speaking at the Bliss report launch in favour of the findings. The big question though is whether there will be funding to back up the guidelines. The truth will certainly be in the eating...

The family on the veranda at the House of Lords!

First training ride!

Wow! What a day to choose for my first long ride! Gale force winds, vertical rain. I came back like a drowned rat! Still, that's the first long ride under my belt so from the relative warmth now it is a good thing!!

Also got to ride through some pretty Essex villages (from what I could see through the rain), particularly Henham.

I think I may need to invest in some cold/wet weather gear to get me through the winter...

Busy time for Bliss

It's a busy time for Bliss. Earlier this month I was fortunate to be invited to attend a focus group meeting at the Cabinet Office to discuss the experiences of parents of premature babies with civil servants in the Prime Minister's strategy group. It was an interesting afternoon and we wait to see if anything good comes out of it.

A few days later, Bliss released the latest version of the Bliss Baby Charter Standards. This charter, first released in 2005 provides guidance and stresses the importance of family centred care in neonatal units. The charter lays out 7 guiding principles:

1. Every baby should be treated as an individual. "I have a name not a number!" This principle states that babies have the right to privacy, pain management, kangaroo care and limited levels of light and sound

2. Decisions are made in the baby's best interest. Informed decisons are made with full involvement of the parents as much as possible. Also suggests sufficient emotional support is provided to parents especially at difficult times

3. Babies receive adequate levels of care. This encompasses Bliss' 1:2:1 campaign for nursing levels and includes the need for staff providing support for breastfeeding, discharge planning, physios, social workers etc. This principle also calls for care close to the baby's home, and also the mother receives care in the same hospital

4. Continuous Improvement. Looks for monitoring and benchmarking of standards and improvement, particularly for family centred care.

5. Support and Information for parents. Includes tours of units, introductions to staff, facilities for parents to have down time and information on support networks

6. Promotion and encouragement of breastfeeding.

7. Coordinated, coherent discharge planning. From planning discharge, provision of facilities for rooming in through to post-discharge care and support.

Quite a lot there isn't there! At a later date I will revisit this but suffice to say for now that even things that you would expect to be in place automatically often aren't (no mother and baby aren't always in the same hospital, they certainly aren't guaranteed to be close to home and 1:2:1 nursing is a luxury few will experience at the moment). For now, visit the Bliss website to learn more.

Finally, Bliss launches its Annual (and 30th birthday!) report later this week at an event at the House of Lords. A future post will report in this event... :o)

It starts here...

So, Cambridge to Paris, something like 360 miles in 5 days. Sounds easy when you say it quickly doesn't it? Throw in the few thousand training miles, particularly through the wind, rain and sleet of the next few months and it becomes a challenge!

Not that I'm starting totally from scratch. I commute 12 miles or so (round trip) to work 2 or 3 times a week and go for the odd run. Still better than nothing. Typically the day after I devised a training plan last week I had a twinge in my knee. I hope it's just in my mind...!

All change!

Well, not exactly all change, more a change of direction! As you can see, this blog has been decidedly quiet since I started it with great intentions over a year ago. The slight change therefore is that now the blog will loosely be about my preparation and training for cycling from Cambridge to Paris next year, in aid of Bliss, the special care baby charity. In addition however it will still include stuff that is kind of related to this goal, be it info on parenting a preemie, interesting news articles, what I've learnt about sitting on top of two wheels for hours at a time and also my all important fundraising activity.Please come back soon...