Travelling this Summer?

Travelling this Summer?

Travelling Tips and Information

With school holidays just around the corner you may be about to travel to places near and far in search of rest, relaxation and a really good time! It is holiday season and so we thought it important to share some advice and travelling tips to help smooth the break. Here are some things to consider:

Health insurance

It’s important to get adequate insurance cover before you travel. You’ll need to find insurance that covers pre-existing conditions. The Pituitary Foundation has a list of insurance companies that deliver policies aimed at people with existing conditions.

Travelling with Medication 

If you are going abroad on holiday it is best to ask your GP or endocrinologist for a letter about the medication and your doses prescribed, that you or your child take. This letter will be helpful should you become unwell and have to see a doctor. It is also useful for you to have this letter whilst going through airport security, in the event that they question the medication. If you have a repeat copy prescription this can also be shown.

If you want to take any sort of medicine with you – either prescribed or bought from a pharmacist – find out if there are any restrictions on taking it in and out of the UK or the country you are visiting. This is particularly important for patients on growth hormone (GH). Ask the relevant Embassy or High Commission or telephone the Home Office for advice.

All of your medication should be labelled with your name and kept with you at all times during your journey.

Finally, always carry medicines in a correctly labelled container, as issued by the pharmacist.

For further useful information, please visit the Gov.UK website.

Flying with Medications

The following is useful advice from Heathrow Airport

You may need to take medications with you when you fly, so talk to your doctor to find out exactly what you need to take. Here are some considerations when taking medications

  • Make sure you take enough for the flight and your time in the destination.
  • Make sure you pack them with you in your hand luggage. Don’t leave liquid medication in the hold because the temperatures could affect it.
  • If you need to take medication in containers over 100 ml, this is possible. However, you will need permission from the airline and airport, and you will need a certificate from your doctor.
  • If you need to take a hypodermic syringe, this should be possible. However, be prepared for special checks at security.
  • Also remember to check any restrictions in the country you are visiting because they may not allow you to take certain medications into the country.
  • Always take a copy of your prescription as well as a letter from your doctor containing details of your medications and condition.

Medications that need to be kept cool

If you have medications that need to be refrigerated, the following are suggestions on how to keep medications cool during travel:

  • Purchase or borrow a small cool bag with two freezer blocks.
  • Before you travel, call your accommodation (hotel, motel, bed and breakfast etc) and ask if they have refrigerators in the rooms or, if not, if one can be hired for your room. If they do not have refrigerators, ask if they have a freezer where they can place your freezer blocks on a rota in order that you can keep your cool bag cool.
  • During travel, place your medication into cool bag with both frozen blocks – the blocks should keep cool for around 12 hours.
  • If you need to use the hotel’s freezer, on arrival, give them one block labelled with your name. Twelve hours later swap the blocks to ensure you continually have a frozen block to use both day and night in the cool bag.
  • For dire emergency, for example, there is no freezer or refrigerator available, wrap the medication in a cold wet flannel and keep in shade. This option is not recommended for the long term.
  • For long haul flights, you can request dry ice packs from cabin crew (they can refuse this request). Dry ice packs will quickly refreeze your ice blocks. It is important to be very careful while handling these packs.
  • Cabin crews may also refrigerate your medications for you on the aircraft (again, they can refuse this request). Be sure it is properly labelled and be certain to retrieve your medications before leaving the plane!

There are growth hormone products that are available that do not need refrigeration – just kept cool – very useful for holidays!

Big Lottery Fund Success

Big Lottery Fund Success

Plans for this year’s Convention are well under way, and thanks to National Lottery players we have almost secured all the funding for it!

The convention takes place from September 28th to 30th, details can be found HERE and there is still time to book. Our successful application to the Big Lottery Fund’s: Awards for All programme means we have once again subsidised the cost of the convention, keeping it as affordable as possible. The event is a wonderful opportunity to hear about latest news and developments, attend information and guidance sessions and spend time with other people who understand what you are going through.

Thank you to the Big Lottery Fund for supporting our work.

Disney Time

Disney Time

The decision has been made…

This year’s theme for Saturday night at the Convention is:

Disney

After the outstanding efforts at the Superhero evening last year, we expect this year to be even better, with princesses, knights, lions, flying elephants and a mouse or two!

For details of the Convention, and a booking form, visit: Convention 2018

Who can beat them?

Who can beat them?

BBC2’s Eggheads programme is on the lookout for a team. Do you have what it takes to beat them? Do you think we could put together a winning CGF team?

If you have enough people to make up a team, the details are below…

Research Awards 2018

Research Awards 2018

The Child Growth Foundation has launched ist latest round of Research Award. The Award is for research projects that will directly enhance the health, psychological wellbeing and education of those affected by growth conditions. Grants cover salaries/stipends and research costs directly associated with the project. The next round is now open. For more information visit: http://childgrowthfoundation.org/2018-research-awards/

Research Funding Update – 2013

Research Funding

Introduction

The Child Growth Foundation (“CGF” or “Foundation”) aims to “promote and fund research into the causes and cure of growth and endocrine disorders, and publish the results”. The Foundation has been actively pursuing this aim for many years by funding numerous research projects. However, at recent Annual General Meetings, some criticism has been levelled at the trustees for a lack of transparency of the procedures by which grants are awarded and by which the subsequent results are evaluated and disseminated. Consequently, at the last meeting of the management committee, I agreed to review the current procedures to ensure that we are adopting best practice.

Source of funding

In recent years, most of the funding for research has been taken from unrestricted funds which are generated from various sources such as membership fees, donations and income generated from CGF Products. However, the CGF has also received donations from pharmaceutical companies to fund specific research projects. These donations are classed as restricted funds and cannot be used for any other purpose. The research grants are awarded, administered and evaluated by the Foundation on behalf of the pharmaceutical company. Research grants represent a significant proportion of annual expenditure and have exceeded fifty per cent of total expenditure in some years.

What do we fund?

The majority of recent grants have been awarded to universities or hospitals in the UK and projects have typically fallen into one of the following categories

  • Fundamental research such as identifying a specific gene that is responsible for a particular growth disorder (e.g. Russell-Silver and Sotos Syndromes)
  • Studying the long term consequences of an intervention (e.g. Growth Hormone Therapy)
  • Investigating the behavioural and psychological effects associated with growth disorders (e.g. premature sexual maturation and Sotos Syndrome)
  • Providing funds to allow families to take part in research studies (e.g. travel expenses)

In some cases, grants awarded by the CGF are used to supplement funding from another source or to support one aspect of a much larger research programme. Projects will only be considered if they accord with the aims of the CGF and will be favoured if they are of potential benefit to members with one of the growth conditions supported by the charity.

 

The decision process

Requests for funding are received by the CGF on an ad hoc basis and are usually discussed at meetings of the management committee. However, as these meeting are held at intervals of approximately six months, it is sometimes necessary for requests to be circulated to the trustees by email. The funding decision is taken by a vote of the trustees on the basis of a simple majority and in most cases the decision is unanimous.

CGF staff then inform the applicant of the trustees’ decision and, where successful, place an agreement with the institution. The principal investigator is required to confirm that ethical approval has been obtained (where necessary) and that copies of all publications arising from the work will be made available to the CGF.

The CGF will take steps to protect intellectual property when it is considered that the results of the project could be exploited financially.

Presenting the results

Successful academic research will typically be presented at conferences and published in peer reviewed journals. On-line access to recent academic publications is often restricted with relatively expensive subscriptions required to view the full papers. However, specialist knowledge is usually required to understand these papers. It is therefore essential that the results of research projects are presented to the membership in a format that is accessible to the lay person. This is typically achieved by inviting the principal investigators to present their work at the annual convention or to write an article for the newsletter. They are also required to submit a report with all invoices so that the CGF staff can confirm that satisfactory progress has been made.

It is important to distinguish between fundamental research and other projects such as epidemiological investigations. Research is by definition, an investigation of the unknown and positive outcomes can therefore not be guaranteed. However, it should always be possible to draw conclusions from the collection and analysis of a data set.

The future

The management committee considers that the current protocols associated with research funding are robust and that the CGF has obtained good value for money in most cases. However, there is always scope for improvement and the following measures will be adopted for future projects

  • The management committee will appoint one trustee to have responsibility for overseeing research projects.
  • When the value of a research grant exceeds £5k or when the project is of high profile, a trustee and/or a member of the CGF staff will hold regular review meetings with the principal investigator or their nominated deputy as specified in the research agreement.
  • A report will be included in each newsletter giving an update on all current research projects. This will also be made available on the CGF web site.
  • The management committee will be more proactive in the funding of research projects and will seek to identify topics that are of particular interest to the CGF. Suggestions from members would be most welcome. Requests for proposals will be announced and it is hoped that professional organisations such as BSPED will be prepared to assist the CGF in publicising and evaluating these proposals.

 

Current and recent projects

The following projects have received funding from the CGF in recent years.

 

Title: Investigation into the role of growth hormone on higher functioning in children

CGF Reference: GR07/01

Principal Investigator(s): Professor Mehul Dattani

Institution: University College, London

Funding Level: £322,000 (funding from Novo)

Duration: 2007 – 2012

Comments: An investigation of the effect of GH on brain development in children. The results showed that children with hypopituitarism displayed behavioural and cognitive difficulties and poor sleep patterns. These problems were linked to brain abnormalities as seen on MRI scans. The research has been published widely.

 

Title: Preterm Growth References

CGF Reference: GR07/02

Principal Investigator(s): Professor Neena Modi

Institution: Imperial College, London

Funding Level: £73,000

Duration: 2007 – 2012

Comments: The production of growth charts for preterm babies born at up to 34 weeks gestation. The preliminary data were presented by Professor Tim Cole at the Annual Meeting of the Royal College of Paediatrics and Child Health in 2011

 

Title: Behavioural and psychological problems in children with exaggerated adrenarche

CGF Reference: GR10/01

Principal Investigator(s): Dr Jeremy Kirk and Dr Gillian Harris

Institution: Birmingham Children’s Hospital

Funding Level: £60,000

Duration: 2010 – 2013 (not yet finished)

Comments: The project is progressing well and early results indicate that some patients with early puberty may display atypical eating behaviours and may have an increased risk of psychological disorders such as anxiety, depression and aggressive behaviour.

 

Title: Purchase of 3D body scanner for hospital

CGF Reference: GR10/02

Principal Investigator(s): Professor Jonathan Wells

Institution: University College, London

Funding Level: £17,000

Duration: March 2011

Comments: Donation of body scanner

 

Title: Ethnic differences in lung function in children

CGF Reference: GR10/03

Principal Investigator(s): Professor Janet Stocks & Dr S Lum

Institution: University College, London

Funding Level: £4,200

Duration: October 2010 – September 2011

Comments: An investigation by way of body composition studies to facilitate early diagnosis and treatment of lung disease in children

 

Title: Early identification of childhood obesity

CGF Reference: GR10/04

Principal Investigator(s): Dr William Johnson

Institution: Bradford Hospitals NHS Trust

Funding Level: £6,163

Duration: Late 2010 – early 2011

Comments: Stage 1 of study into possibility of creating a prediction app (completed)

 

Title: Early identification of childhood obesity

CGF Reference: GR11/01

Principal Investigator(s): Professor Noel Cameron & Professor John Wright

Institution: Bradford Hospitals NHS Trust

Funding Level: £100,000 (approx.)

Duration: January 2011 – December 2012

Comments: Stages 2 and 3 – development of a prediction app. See report in this newsletter.

 

Title: Patient choice and “value added” items: influences in adherence with GH therapy

CGF Reference: GR11/02

Principal Investigator(s): Dr Jeremy Kirk

Institution: Birmingham Children’s Hospital

Funding Level: £20,000

Duration: February 2011 – December 2011

Comments: An investigation of the difference in growth outcomes in children offered a choice of GH therapy and those who were treated in hospital. The results show that the type of GH and the method of treatment had no significant effect on height SD, compared with children receiving no treatment after one year.

 

Title: Which early risk factors should be used to identify a baby’s risk of obesity?

CGF Reference: GR11/03

Principal Investigator(s): Dr Thomas Willis & Professor Mary Rudolf

Institution:  Leeds General Infirmary & University of Leeds

Funding Level: £10,703

Duration: 3 months in 2011

Comments: An investigation of the factors that may predispose babies to obesity in later life. Factors such as parental obesity, weight centile, infant weight gain and smoking in pregnancy were all considered to be useful factors in the development of an obesity risk tool for use by health professionals.

 

Title: Adolescent obesity – from prevention to surgery

CGF Reference: GR12/01

Principal Investigator(s): Dr Buchanan and Mr Desai

Institution: Department of Paediatric Surgery, King’s College Hospital, London

Funding Level: £2,000

Duration: April 2012

Comments: Support for a workshop and symposium.

 

Title: Summer internships

CGF Reference: GR12/02

Principal Investigator(s): Prof Noel Cameron

Institution: Centre for Global Health and Human Development, Loughborough University

Funding Level: £4,680

Duration: July – August 2012

Comments: Support for an application to British Heart Foundation for financial support in respect of a project to determine the effectiveness of interventions designed to prevent overweight and obesity in pre-adolescent girls.

 

Title: A randomised study of two anti-thyroid drug treatment regimes in young people with thyrotoxicosis

CGF Reference: GR12/03

Principal Investigator(s): Dr Tim Cheetham

Institution: Royal Victoria Infirmary, Newcastle upon Tyne

Funding Level: £20,000

Duration: November 2012 – November 2017 (but CGF only funded first 2 years)

Comments: Study started in 2004 and funding is needed to allow study to continue and hopefully complete so providing useful and novel data in a substantial number of children with a rare disorder.

 

Title: Long term effects of GH therapy

CGF Reference: GR12/04

Principal Investigator(s): Professor Gary Butler

Institution: Institute of Child Health, London

Funding Level: £22,300

Duration: Late 2012 – 2013 (not finished)

Comments: An investigation into the long term effects of GH therapy as part of the European SAGHE study.

 

 

 

Title: Metabolic outcomes in RSS

CGF Reference: GR12/05

Principal Investigator(s): Dr Renuka Dias

Institution: University of Birmingham

Funding Level: £5,000

Duration: Nov 2012 – Jan 2014 (not finished)

Comments: Grant was made to help with patient expenses for travel to Birmingham.

For more information about any of these projects please contact Ros Chaplin or Simon Lane.