NICE Faltering Growth Quality Standard

NICE Faltering Growth Quality Standard

NICE have 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 can be found at the link below.

NICE Faltering Growth Quality Standard

 

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

RARE Youth Revolution

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

Virtual Coffee and Chat Groups

Virtual Coffee and Chat Groups

Virtual Support Groups

We are really excited to announce the launch of a new support group service. We are introducing ‘coffee and a chat’ virtual groups. A one-hour online meeting where you can get together to share support and information.

The groups will be condition specific, so will be directly relevant to you and we will be running groups for most, if not all, the growth conditions we support.

To run the groups across all conditions, we need the help of some eager volunteers. Would you like to be a virtual support group leader? The technology will be handled by the CGF so we are not after IT-wizards. What we do want is someone friendly and with good knowledge of the particular growth condition. If that is you and you have an hour or so to spare each month, please email us at: info@childgrowthfoundation.org

We will bring news of future groups on our website, but please also check out our social media pages.

The first group is for people connected to Multi-Pituitary Hormone Deficiency and is on:

Monday 15th June at 2.00pm

For safety reasons the groups are only open to Members of the CGF, either full or associate level. Full Membership is £25 for people in the UK, Associate Membership is free.

To become a member, please visit: Membership

To attend the Coffee and a Chat group, please email us at: info@childgrowthfoundation.org

Annual Convention 2020 – Cancelled

Annual Convention 2020 – Cancelled

2020 CGF Annual Convention – CANCELLED

Given the severity of the current COVID-19 pandemic, and after much deliberation, we have made the decision to cancel this year’s CGF Annual Convention, that was to have taken place from 2nd to 4th of October in Warwick.

It is still unclear exactly what will happen in the weeks and months ahead but with talk of social distancing lasting for some time, we feel it would be unwise to go ahead. Our members and families are very important to us and your health is the top priority. It saddens us to bring this news, but we know it is the right decision and we hope you understand.

If you have already booked your place at the convention, we will be in touch soon and will refund your payment as soon as possible. If you have already made your hotel reservations, please remember to cancel. Please be aware though, that many of the hotel staff are not currently working, so we would recommend leaving this for a few weeks, and you can then cancel directly with the hotel staff, otherwise your call will probably go to central reservations.

We are looking to host some virtual meetings in October and are currently engaging with health professionals to develop an online programme. We will be in touch nearer the time with details.
We also hope to hold a social event sometime in early 2021 and will let you know as soon as we can if this will be possible.

Our thoughts and best wishes are with you all at this time and we look forward to seeing many of you in 2021.

Thank you

‘Growth Matters’ Podcast Launched

‘Growth Matters’ Podcast Launched

‘Growth Matters’ – podcast launched

We are delighted to announce the launch of our very own podcast, which we have appropriately called ‘Growth Matters’.

Growth Matters is a monthly ‘chat magazine’ that will bring latest news, research updates, details of growth conditions, personal experiences of living with rare conditions, interviews with health professionals and so much more. As the series progresses, it will build into a library of invaluable information for parents, friends and those with a growth condition. It will also develop to be a useful learning tool for health professionals, and schools, and other interested parties who want to find out more about the conditions we support.

You can see why we are so excited!

The podcasts will be available from our BuzzSprout web page, and you will also be able to find them through podcast apps.

The all important link is:

‘Growth Matters’

Head over and start listening now!

If you have any feedback on the podcast, we would love to hear it. Also, if you would like to tell your story through one of the casts, or you are a health professional who would like to be interviewed then please also get in touch: info@childgrowthfoundation.org

 

New Blue Badge Rules

New Blue Badge Rules

New Blue Badge rules in England to came into force on 30 August 2019

Last year the government announced its intention to expand the blue badge rules in England to make it easier for people with hidden disabilities such as autism to qualify. However, no date was provided for these new rules coming into force.
Now the government has published regulations confirming that these new rules will start to apply from the 30 August 2019.
As a result of the consultation, automatic entitlement to the Blue Badge will be extended to those in England who score 10 points under the Personal Independence Payment (PIP) mobility test of being “unable to undertake any journey because it would cause overwhelming psychological distress to the claimant”.

Entitlement will also be extended to those who are assessed as having an enduring and substantial difficulty which causes them during a journey to either:

  • Be unable to walk.
  • Experience very considerable difficulty whilst walking, which may include very considerable psychological distress.
  • Be at risk of serious harm when walking; or pose, when walking, a risk of serious harm to any other person.

The new rules also allow local authorities to use a broader range of professionals to assess the nature and effects of an applicant’s disability on their ability to get around.

Derek Sinclair, one of Contact’s Family Finance advisers, said: “We get many calls to our helpline about Blue Badge entitlement and lots of parents have been left frustrated by the absence of any start date for the new rules.

“The current rules make it difficult for many people with conditions such as autism or learning difficulties to qualify, so many families will eagerly await the new rules in August opening up entitlement for many more children and adults with hidden disabilities.”
You can find out more about the different Blue Badge rules in the different nations on the Contact website.