Introduction

It’s extraordinary how time flies as I note this is my thirtieth Annual Report of Foundation activities. Thank-you for putting up with me for so long.

The Foundation is in robust financial health and our funds remain secure despite the ravages of the economic downturn which has been felt by businesses and charities across the UK. We have worked hard on behalf of all members to ensure that we minimised the effects of the downturn on the Foundation. I’m delighted to report that our revenues from the sales of growth equipment and the provision of training courses, and royalties received from growth charts continue to be satisfactory.

Research and Equipment

We continue to fund research, although for various reasons we are finding it more difficult to get some research off the ground. In particular we find it problematic to get paediatric or endocrine specialists to focus on dedicating the time to research growth issues. However, to mark our 30th anniversary we have a special project where we have made a grant (which we expect to come to about £70,000) to Imperial College to produce longitudinal growth centiles for pre-term children. This is an important step forward, which will ensure that the UK no longer has to exist with centiles based on cross-sectional data.

Imperial College is successfully capitalising on a new network of neonatal units to achieve the academic part of the project and, co-incidentally, is creating the need for more equipment, in particular the Leicester Incubator Measure, to be sold by the Foundation’s subsidiary CGF Products Limited. A device for measuring babies in incubators was first marketed in the 1980/1990s, but it was found to be flawed when it came to taking the length of the tiniest of babies. Invicta Plastics, with whom the Foundation has developed the instrument, has completely rethought the concept and has produced a device which complies with the latest very stringent specifications governing equipment in intensive care and neonatal wards, and the device is now in full production. The Foundation will also be supporting the specialist training that the nurses will need to measure babies that can comfortably lie on an adult’s hand.

During the period we made a grant of £24,000 to University College of London Hospital for a mobile 3D body scanner, which we have named this the "Growth Mobil". The 3D scanner uses light to measure hundreds of body dimensions and then it collates these measurements to form a 3D image; the total time taken for the measurements is less than one minute. The information is then stored within a computer. The benefit of the system is the ability to measure a large number of subjects very accurately and quickly and then record the information without error. This will assist in the detection of growth trends that may be considered as exceptional and need further investigation. The "Growth Mobil" is housed on a trailer and can be transported around the country simply by towing the trailer with a car. Our aim is that there should be a fleet of these, enabling proper measurement to be taken of children throughout the length of the country.

Overall our equipment sales made via our subsidiary trading company, CGF Products Limited, have increased as compared to last year (from around £114,000 to almost £121,000). However our gross profit decreased from approximately £35,000 to approximately £30,000 due to pressure on margins.

Training

As I reported last year, the Foundation continues to offer health professionals the specialist training needed to use and interpret the new UK-WHO growth charts. This has helped to increase the income from training for the year to just over £16,000. The Foundation is well-placed to deliver such training and, even before the new charts were introduced, we were able to offer advice on the rough designs and usability at our regular growth courses.

Membership

I am pleased to report that overall membership numbers continue to hold reasonably steady, although there appears to be a small decline in certain disorder groups matched by an increase in others.

Membership benefits continue to thrive from our membership hub in Birmingham. Our membership secretary Jenny Child continues to provide a sterling service. Our convention continues to be the flagship event of the year where families can get together and discuss common issues and problems. It’s wonderful to see so many old faces, as well as a good influx of new ones. If we continue as we are with the convention we may be forced to leave the Hilton at Northampton, which has served us for many years now, because it will soon be unable to cater for the large number of children we have in the crèche. It’s a testament to Jenny and the team that we are considering such a development.

During the year we have here continued to develop the Foundation’s website, which I believe brings great benefit to raising awareness – not only with health professionals and social services in the UK, but looking at the enquiries we receive it also brings us a lot of attention from around the world. The advent of the internet has seen the number of telephone enquiries to the Foundation decrease. We believe that despite the ease of researching information on the world wide web, recently diagnosed parents still require the human touch and we are looking at ways to ensure the world understands our point of difference. We will always provide funds for research but we will not and cannot forget the needs of those who might be going through the initial trauma of a diagnosis and want a shoulder to cry on. Jenny and the other parent support advisers, as well as ‘condition group’ leaders, give an outstanding service for parental support.

Media and Publicity

As Chairman I have continued to be proactive with the media and tried to ensure the Foundation gets its share of voice across both broadcast and print media. Increasingly I find that to get our message across I have to do it on the back of obesity issues. This is understandably a contentious point, and whether we continue to hitch a ride on obesity is a matter which I would like to put before our members. I would value input and views from members so that I and the Foundation’s other trustees can take a view on that going forward.

One area where I have been particularly active over the last year is that relating to the UK-WHO Growth charts. Despite my best endeavours, the Department of Health [DH] – the custodian of the nation’s health - has chosen finally to replace some of the charts that the Foundation has pioneered over the last generation with charts which are quite unrepresentative of UK children’s early growth. They are based on growth standards developed by the World Health Organisation [WHO], compiled from the measurements of predominantly breastfed infants which do not match those from the UK’s predominantly bottle-fed babies. An Annual Report is certainly not the vehicle to spell out every minutia of the UK-WHO charts but it should record bewilderment that the DH should knowingly promote material challenged by growth experts. The charts have been characterised in an editorial as “likely to provide misleading and conflicting information“ [Annals of Human Biology, February 2009]. I understand, too, than a further damning editorial may soon be published in Paediatrics & Child Health; its title is “Should the UK use the WHO chart?” Need I go on?

I do need to because, when the launch took place in May of last year scarcely a health professional in the country had been adequately informed why the UK-WHO charts were deemed necessary and how radically different they were from the Foundation’s charts in everyday use. Not only had the DH ignored advice from its own specialist scientific advisory committee on nutrition [SACN] not to introduce the charts without implementing a well-planned communications strategy, but it had also failed to train anyone in the charts’ use. You may better understand my bewilderment when learning that, in 1992, the introduction of the Foundation’s charts was smooth and required scarcely any specific training at all.

The die is cast, however, and England is stuck with them. One has to assume that the three other UK countries will follow Westminster’s lead but, as yet, no launch dates have been publicly announced. They might decide, quite rightly, that there is little sense in introducing charts that do not reflect the growth of the population they are designed to monitor and that sorting out their appalling levels of breastfeeding should have a higher priority than foisting ”slimmer“ breastfeeding charts on a “fatter“ bottle fed nation. One simple detail that you should bear in mind is that only 1% of UK mothers are breastfeeding for fully six months as recommended by the DH. Whilst the WHO charts will be brilliant for them, they will be less than perfect for the 99% of mums who opt for formula feeding.

A second detail – indeed, you could justifiably call it a glaring error – is an omission that concerns the Foundation greatly and in respect of which we continue to campaign. Unbelievably the UK-WHO charts omit any link to parental height in the assessment of a child’s growth. This association has been the bedrock of clinical paediatric endocrinology since growth charts were first designed in the 1960s because it provides a very useful aid in diagnosing normal/abnormal growth. As any first year medical student will know, a child’s adult height is predominantly determined by genetic endowment and to ignore this biological certainty is akin to putting your head in the sand. The UK-WHO charts succeed in doing this by featuring only an adult height prediction look-up table which assumes that a child will grow healthily throughout his/her growing years. Even then, the table is “accurate“ to only ± 6cm and works for only 80% of children. What use is this, you may ask, for the 20% excluded from the table or for the child who, because of ill health, fails to grow normally?

The UK-WHO charts’ recognition of BMI is also of great concern to the Foundation. We would praise the recognition were it not for the fact that the BMI conversion table featured is flawed and certain to stigmatise certain children as being overweight/obese when they are not. The charts’ over-simplistic table linking a child’s height/weight data to a BMI centile defies the clinical considerations that are required in judging whether the body mass is appropriate to the child. To make matters worse, the data underpinning the table is not the same data as on the Foundation’s BMI data recognised by the DH as still being appropriate for the UK. The net effect of the UK-WHO data is misguidedly to increase the percentages of the child population deemed to be overweight/obese at a time when everyone – the DH included – wants to see the percentages come down. In some circles this would be called shooting oneself in the foot.

We will continue to lobby on your behalf to ensure our nation’s children and their parents receive the best possible health advice relating to growth. For the past thirty years we’ve had to hammer on a few doors much of that with great success. We are confident the right outcome will be achieved but at the moment it’s difficult to put a timeframe on it.

There is, by the way, only one positive out of all of this, and that is a purely financial one for us. The new UK-WHO charts are illustrated with recommended measuring equipment, all of which have been designed by the Foundation and is marketed by us through CGF Products Limited – hopefully that will bring more equipment sales.

Conclusion and a Look Ahead

You will see from the financial statements and my comments above that the Foundation is in robust health. This is in part down to the enterprise that the Foundation displays in marketing itself but also to everybody in the Foundation working to ensure that we continue to be regarded positively by our members, health professionals, customers and others with whom we have regular contact in the UK. I thank every one of you for your part in that.

Tam Fry

Honorary Chairman