PenCycle

by Neil Hunter | Nov 2, 2021 | Growth Hormone, Growth Hormone Deficiency, News

Reclycing Initiative Launched by Novo Nordisk

PenCycle is the exciting new environmental initiative by Novo Nordisk which aims to drastically reduce the amount of waste produced by pre-filled medication pens.

As part of their ‘Circular for Zero’ environmental change policy, they have created a recycling scheme for the pens, which includes their pre-filled growth hormone pen, which will help reduce the 23 million pens currently going into landfill or being incinerated each year.

The plan is simple, instead of placing your empty pen in the sharps bin, take the needle off and put the rest of the pen into the PenCycle box (the needle goes in your sharps bin as usual). The Pencycle box will be delivered to you through your Alcura service and Alcura will take the box away when it is full.

The pens will then avoid landfill and may then be recycled into chairs or light bulbs.

The pilot scheme will run for 6 months initially, in a small number of areas using the Alcura delivery servie. During the pilot Novo Nordisk are looking for a 30% uptake to the scheme, and then will then decide how to roll the programme out further.

To find out more download the PENCYCLE leaflet

or visit the growth hormone pre-filled pen WEBPAGE

NICE Faltering Growth Quality Standard

by Neil Hunter | Sep 1, 2020 | News

NICE has published a quality standard for faltering growth

The faltering growth quality standard covers recognising and managing faltering growth in babies (aged up to 1 year) and preschool children (aged over 1 year). It describes high-quality care in priority areas for improvement. CGF trustee, Rachel Pidcock, was a lay member on the specialist committee and contributed towards the quality standard, the CGF was also a stakeholder in its development.

The standard aims to improve the identification, management and support related to faltering growth and focusses upon four core statements:

Measurement: Babies and preschool children have their measurements plotted on a growth chart if there are concerns about faltering growth. You can download our measuring guidelines at MAKE EVERY CONTACT COUNT
Feeding or eating history: Babies and preschool children have a detailed feeding or eating history taken if there are concerns about faltering growth.
Management Plan: Babies and preschool children have a management plan with specific goals if there are concerns about faltering growth.
Supporting breastfeeding: Mothers are supported to continue breastfeeding if their baby is given supplementation with formula because of concerns about faltering growth.

You find out more about the standard at this link: NICE Faltering Growth Quality Standard

Or, download the pdf HERE

NICE quality standards describe high-priority areas for quality improvement in a defined care or service area. Each standard consists of a prioritised set of specific, concise and measurable statements. NICE quality standards draw on existing NICE or NICE-accredited guidance that provides an underpinning, comprehensive set of recommendations, and are designed to support the measurement of improvement.

RARE Youth Revolution

by Neil Hunter | Jun 12, 2020 | News

The RARE Youth Revolution has begun

RARE Revolution Magazine have announced the launch of the RARE Youth Revolution movement, along with its new online home at rareyouthrevolution

This online platform is giving a voice to the youth of RARE, sharing news and views on a fresh and innovative, accessible platform, with content that is created by children and young people affected by rare disease—FOR children and young people affected by RARE, ensuring their voices are heard.

A dedicated online rare disease platform for young people

There are many adult communities and support groups in the rare disease space, but children and young people have struggled to find an outlet, and following the success of their #RAREYouthProject pilot in 2018 they have been working hard to address this inequality and fill that void.

The website is a focal point for this movement, empowering young people to share their experiences through storytelling, be it writing, video, art or audio, and to enable them to become connected to what is happening in the rare world—sharing news and events, science and technology, charity and advocacy, in an age appropriate way through the voices that matter to them—theirs!

Join the RARE Youth Revolution

Would you like to join our RARE Youth team to help guide the direction of this movement?

Perhaps you’re an aspiring blogger or vlogger and would like to contribute your story?

If you are then drop the youth editor, Daisy Marriott an email at dmarriott@rarecommunciation.com

www.rareyouthrevolutionmagazine.com

Travelling this Summer?

by Neil Hunter | Jul 11, 2018 | News

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!