Neil Hunter, Author at Child Growth Foundation

We Are Recruiting

by Neil Hunter | Aug 19, 2022 | News

Operations, Marketing & Communication Manager

Job Summary

Founded in 1977, the Child Growth Foundation (CGF) is the leading UK charity focusing on the support and management of rare growth conditions affecting children and adults. The purpose of this role is to drive awareness of, and support for, the CGF’s mission to improve the detection, treatment, and management of diverse growth conditions in children – as well as providing support and information for their families – through strategic creative campaigns and ongoing network outreach.

The role’s aim is to consolidate and raise the profile and visibility of the Child Growth Foundation and to position it as the leading UK authority and thought leader on conditions affecting child growth.

About The Role

The Operations, Marketing & Communication Manager will play a key leadership role in the day-to-day operations of the Child Growth Foundation, with responsibility for the charity’s marketing and PR activities, the management of its staff, and its communications with members, medical professionals, and media.

Key Responsibilities

• Develop and ensure implementation of effective marketing plans including day-to-day communications to achieve agreed strategic goals
• Develop and implement fundraising initiatives
• Manage the administration of the charity’s operations including budgetary control, HR, regulatory compliance, and event organisation
• Support the Board of Trustees to arrange meetings, take and distribute minutes, and organise our annual AGM

To Apply

Please send a copy of your CV along with a covering letter, explaining clearly your suitability for the post and how you meet the skills and experiences required for the role, to:

Jeff Bolton Chair of Trustees

Closing Date

The closing date for applications is 11th September 2022

Initial interviews will be held, via Zoom, 12-13 September 2022

Final interview date: tbc

The successful candidate will be required to undergo a DBS check.

Download: JOB DESCRIPTION

Gastrostomy in Growth Conditions

by Neil Hunter | Jun 24, 2022 | Information, Silver-Russell Syndrome

Feeding Difficulties and Gastrostomy in Growth Conditions

Some babies born small for gestational age (SGA), or those with a diagnosed growth condition such as Silver-Russell Syndrome may experience feeding difficulties. This can range from mild to severe and can be a very stressful time for a parent or carer.

If a baby or child is experiencing feeding difficulties and their growth and health is being affected, they usually have assessments and investigations to determine the cause of the feeding difficulties. They may also have several different specialists supporting them, such as a dietician, speech and language therapist and a paediatrician. The specialists may prescribe high calorie milk and develop feeding plans and strategies with the parent/carer to help with weight gain. However, for some children/babies, the feeding difficulties may be so severe that they might require additional support to ensure they have enough nutrition to help them grow, develop, and keep them healthy. Assessing and deciding on supplementing nutrition with tube feeding is made on an individual basis, taking into consideration the child’s age, medical needs, and the period of time for which nutritional support is likely to be required. A first option could be to give feeds through a nasogastric tube. This is a thin plastic tube inserted into the nostril and passed down the food pipe into the stomach. While this is an effective way of feeding directly into the stomach, it is seen more as a short-term solution to boost calorie intake.

A solution that provides sustained calorie intake is to fit a gastrostomy tube, sometimes referred to as a gastrostomy peg or feeding tube. This has the benefit of being less visible than the nasogastric tube but, it is usually only inserted if there is a need for the child to receive nutrition in this way on a long-term basis.

What is a gastrostomy?

A gastrostomy is a surgical opening through the skin of the abdomen to the stomach. A gastrostomy tube is put into this opening so that special feeds, that contain extra nutrients, can be given directly into the stomach. There are different types of gastrostomy’s available, the medical team alongside the family will decide which type of gastrostomy is most suitable for the child. A short operation under a general anaesthetic is required to insert the gastrostomy, following the operation, the parents/carers will then start to receive training from the hospital/ward staff on how to use and care for the gastrostomy. A community nurse and or gastrostomy nurse specialist usually continue to train and support families at home in managing their child’s gastrostomy.

Using a Gastrostomy

When a child has a gastrostomy, the family alongside the doctor, dietician and speech and language therapist should agree how and when it will be used to give the feeds. The best interests of the child should be the primary goal, just because the gastrostomy tube is in place doesn’t mean they will be fed solely in that way, depending on the child’s health needs they may have overnight feeds into the gastrostomy or ‘top up’ feeds after family mealtimes. Sometimes a special electric pump is used to deliver the feed over a period of time, or the child could have ‘bolus’ feeds which can be given using the pump or a syringe.

Further Support

You can find out more about gastrostomy feeding by downloading this Great Ormond Street Hospital guide:

Download

Or, you can contact us

0208 995 0257

Diagnosing Silver-Russell Syndrome

by Neil Hunter | Jun 17, 2022 | Information, Silver-Russell Syndrome

Diagnosing Silver-Russell Syndrome

Getting a diagnosis of a rare condition, such as Silver-Russell Syndrome can be a drawn-out process. In the UK, it can take over four years, on average, to get an accurate diagnosis of a rare condition. This can be a frustrating time for parents, and all concerned. It can also be a time of wrong-turns, dead-ends and misdiagnoses. It is crucial to get the diagnosis right, as the diagnosis often determines management and support options.

Diagnosing SRS poses particular problems as there is often a large overlap of SRS symptoms with many different conditions. A crucial breakthrough in Poblet, Spain, in 2015 saw 36 leading international SRS specialists agree, by vote, and representatives from patient support groups, including the CGF, the elements that are distinctly SRS. And a year later the conclusions of this meeting were published as the First International Consensus Statement regarding Silver-Russell Syndrome. Consensus statements are vital for increasing understanding and awareness of rare conditions, which greatly improves the diagnosis process. The consensus statement regarding SRS recommended using Netchine-Harbison Clinical Scoring System (NH-CSS) as a tool for clinically diagnosing SRS.

Consensus Statement

A consensus statement is a public statement on a particular aspect of medical knowledge, agreed by a representative group of experts to be evidence based, they are vital for increasing understanding and awareness of rare conditions, which greatly improves the diagnosis process. The consensus statement regarding SRS recommended using Netchine-Harbison Clinical Scoring System (NH-CSS) as a tool for clinically diagnosing SRS.

What is the NH-CSS/How Does it Work?

The scoring system identifies six factors (clinical criteria) that are considered statistically strong indicators of Silver-Russell Syndrome. It actually works by statistically ruling out Silver-Russell Syndrome and therefore, if it can’t be statistically ruled out then SRS becomes a strong possibility. If the patient scores 3 or less out of 6 they are determined not to have a clinical diagnosis of SRS (however a score of 3 can result in continued clinical suspicion). The scoring system is relatively straight forward, it is a score of 1 if that indicator is present, and it is a score of 0 if it isn’t. The end result is a score out of 6, which makes it easy for a physician to interpret and is flexible enough to allow for some missing information.

What are the Six Clinical Criteria?

SGA (small for gestational age – birth weight and/or birth length)

SGA is a term given to a baby that is born smaller than normal compared to other babies born at the same gestational age (read more).

Score a point if: the baby is equal to/or less than 2 standard deviations (SDS) below average. Standard deviation is a measure of how spread a measure is around the average (or mean), in this case weight and/or length of babies born at the same gestational age. This would mean the baby is in about the smallest 2% of all babies born at that gestational age.

Postnatal growth failure

Is a term (and not a great one, because you haven’t failed at anything!) used to describe babies that are not growing as expected/normal following birth.

Score a point if: the baby’s height at around 24 months is less than 2 standard deviations below the average for babies at the same age. OR the baby’s height is 2SDs below the mid-parental target height.

Standard Deviation

Standard deviation is a number used to tell how measurements for a group are spread out from the average.

The lower the number, the closer it is to the average, the higher the number the further it is from the average.

The bell curve above shows that 2SDs (the dotted lines) below the middle point represents around 2% of the population.

Relative Macrocephaly at Birth

Macrocephaly means your baby’s head is larger than other babies of the same sex and same age, measured by head circumference. Relative macrocephaly considers the size of your baby’s head against their weight or length.

Score a point if: your baby’s head circumference at birth is equal to/or greater than 1.5 SDS ABOVE their birth weight and/or length SDS. For example, if your baby’s birth weight was -2SDS and their head circumference was -0.5SDS then they would score a point.

Protruding Forehead

Also known as frontal bossing, this is where your baby’s forehead sticks out beyond their face when looking at them side on.

Score a point if: your child has a protruding forehead between the ages of 1 to 3.

Body Asymmetry

This is where all, or part of one side of the body is smaller than the other.

Score a point if: there is a leg length discrepancy (LLD) of 0.5cm or more or, there is arm or leg discrepancy that is less than 0.5cm but two other parts of the body are asymmetrical.

Feeding Difficulties and/or Low BMI

Body mass index gives a figure that compares weight against height, and in children also considers age and gender. It is used to give an idea of how healthy your weight is.

Score a point if: the BMI score is equal to/or less than -2 SDS at 24 months old. Or, score a point if your child is using a feeding tube.

Clinical Diagnosis

If the child being examined scores 4 or more on the NH-CSS then it is recommended they have genetic testing. The genetic testing may confirm Silver-Russell Syndrome. However, the testing might come back “normal”, which means no genetic cause has been found.

If this happens then the score of 4 or more on the NH-CSS can be used to give a clinical diagnosis of SRS, BUT only if the clinical criteria that scored a point includes BOTH protruding forehead and relative macrocephaly at birth. The large head in relation to weight at birth is a distinguishing characteristic of SRS that almost all SRS children have. But macrocephaly can be present in other conditions too, which is why it should be used as an indicator of SRS unless other clinical criteria have also been identified.

Get in Touch

If you have any concerns regarding any of the above, or want to chat to us about it, please get in touch:

Email Us or Call us on: 0208 995 0257

What’s Your Story

by Neil Hunter | May 17, 2022 | News, Story

A Guide to Sharing Your Story

Storytelling is one of the most powerful ways to help raise awareness of rare medical conditions.

Stories can help so many people. People who need to know they aren’t going through it alone, people who can identify with what is going on and help speed up a diagnosis, people looking to raise funds and increase understanding of rare conditions that precious little is known about.

Stories create a connection. They help to explain our world and they help others to make sense of their world. Let’s face it, we all like a good story! And we’d really like you to share your story.

If you’ve thought about writing down and sharing your experience but aren’t sure where to start, the following 3-step plan might help:

Planning

A good planning stage sets up the foundation for the rest of the process.

Think about why you want to share your story. What is the main thing you want people to feel, think or do? Was it that you found it so hard to get a diagnosis? Was it that nobody seemed to listen to you? Was it that you found great support somewhere and want to let people know? There are many ‘angles’ you could take with your story. It might be that you want to tell the whole story, which could take some time, so perhaps consider telling it in stages.

Once you have your angle, think about the obstacles that were in your way. The obstacles are the ‘conflict’ and conflict is crucial for storytelling. It doesn’t mean physical conflict, though it sometimes might be, think more about the hurdles you had to jump over to get to the point you needed to be at.

The final part of the planning stage is the ‘emotion’ of the journey. What did you feel? Emotion engages the reader and makes the story more compelling, more ‘real’.

Remember:

(or, what did you want, what stopped you, how did you feel)

Building

With the basics of your story written down at the planning stage, the building stage is the fleshing out of the details.

Think of particular incidents that will help bring your story to life. Was there a particularly difficult appointment, a reaction to a medication – these snippets and anecdotes help build the emotion and place the reader in the journey with you. They can be funny, or sad, or frustrating – the key thing is that they will be emotional.

If you struggle to think of some, talk to family and friends – it could be that you’ve forgotten about ‘that incident’ and that speaking to a friend will bring it all back.

Writing

The final stage (well almost the final stage) is the writing.

The best tip here is to write as if you were telling someone the story. Keep it conversational and informal.

Use plain English (if that is the language you are writing it in!). Use short sentences, this helps keep it punchy and quick and whisks the reader along the journey.

Most of all, be yourself. This is your story, it is very personal to you. Don’t think you have to write it the way people think you should write it. It is your experience and if you tell it in your ‘voice’, not only will be easier to write, the reader will engage more as they will get a sense of who you are – which builds the connection.

The Afterwards Bit

Once you’ve planned, built and written your story the best thing to do is sit back for a while.

Let it rest before looking back over it. Does it tell the story you wanted to tell? Are you happy with it? Once you’ve re-read it and tweaked it, perhaps give it to a friend or family member to read through.

Finally, well almost finally, leave it to rest a little bit more. The experience of sharing your story might well bean emotional one. You will be re-living events and emotions that might well have been very tough at the time. You might be upset again. Writing your story can be a rewarding release and feel like closure, but it also might stir up emotions again. So let the story sit for a bit longer, make sure you feel ready to share it. Just because you’ve written it, doesn’t mean you have to share it. Are you ready to let the world see it? If not, do not worry, put it in a drawer and let it rest until you are ready.

If you are ready to share it, then you can send it to us – and if possible, with photos. Photos are another way of giving the story life and engaging the reader.

You’re Done

That’s it. You’ve written and submitted your story, and it will be used to help encourage and inspire others.

We could use that story in:

Our newsletter
Our e-newsletters
Our website
In fundraising applications
Annual reports

The most important thing is that you own your story, we will ask you where we can use it and we will only use it in that way. If you feel it is time for us to stop using it, then let us know. You own your story and we wont use it without your permission.

What Next

If you are interested in telling your story, get in touch

Or, perhaps you would like to tell your story on film? We have recently used personal stories in the video presentation that Sally, our Growth Nurse Specialist, has been developing. Get in touch with us if you’d like to know more or want to film your experience.

Trustee Changes

by Neil Hunter | May 6, 2022 | News

New Chair for CGF

After many years of guiding us as Chair, Nick Child has stepped down from this position for family reasons, however thankfully he will still play an active part in the Trustee board moving forward.

We are delighted to inform you that the trustees have thus elected a new Chair and also a new Vice Chair, as this position was vacant. Please join me in welcoming Jeff Bolton as Chair, and Jessica Watts as Vice Chair. Jeff has been a trustee with us for 18 months and brings an immense amount of experience, having previously been employed as European Brand Director at Pfizer, a well-known pharmaceutical company. Jess has been a trustee for a number of years, she is a regular participant in our Facebook and virtual support groups and those of you who have attended conventions will know her as an active part of the MPHD group and mum to Skye.

Please join me in giving thanks to Nick for all his efforts, time and commitment as Chair, and to welcoming Jeff and Jess as they step forward.

We would welcome any expressions of interest for new trustees to join us, particularly those with legal and HR experience, although all applications welcome. Please contact Rachel if you are interested in finding out more.