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  • About
  • Patients and families
  • Healthcare Professionals
  • Education
  • CHUF
  • News
  • Events
  • Contact Us

Patient and Family Engagement Group

 Patients and families remain at the heart of our network and your opinions and ideas for the future of the service and how it is delivered is key to success and longevity of the network.  

The Patient & Family Engagement Group

The Patient & Family Engagement Group

The Patient & Family Engagement Group

This public voice group participates in discussions, critiques relevant information and documentation and champions the voice of service users across the North East and North Cumbria Congenital Heart Disease Network (NENC-CHDN). It provides a balanced view of Congenital Heart Disease (CHD) services, both positive and negativ

Can I join?

The Patient & Family Engagement Group

The Patient & Family Engagement Group

Everyone who uses the service or may do so in the future can join the group: Patients, families, carers etc. We aim to have representation from a variety of subgroups across the patient population.

Why we want YOU to join?

The Patient & Family Engagement Group

Why we want YOU to join?

Your views should inform service development, this helps us get services right for patients and supports continuous improvement across the North East and North Cumbria. We recognise and value the contribution of those who use the CHD services in shaping the future health care provision in our region across the organisations.

What do members do?

What do members do?

Why we want YOU to join?

Participation can take place in a variety of ways: Email surveys, social media, forums, working groups, group meetings, board meetings and national meetings.

How do I join?

What do members do?

How do I join?

Please get in touch on nuth.enquiries-nencchdn@nhs.net if you would like to contribute to the future development of the network, we can’t wait to have you on board! 


Our "Contact Us" page - Please click here 

Events

What do members do?

How do I join?

See our events page for upcoming meetings and working group sessions.

What you've told us so far

What you've told us so far

What you've told us so far

The following key themes were highlighted from initial discussions:

  • Transition
  • Research
  • True engagement with patients
  • Building a patient and family engagement database
  • Care closer to home 
  • Communication 

Photo Gallery

Patient and Family Engagement Group logo

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle.

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle.  

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle.  

Ladies wreath making day 28th November 2021, Royal Station Hotel Newcastle. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021.

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Men's golf event, Close House, Heddon-on-the-Wall 22nd August 2021. 

Worried about a poorly child?

Every parent worries when our little ones are not well. But help is at hand! Find out more by clicking the button below and download your own copy of The Little Orange Book.

Find out more

The Little Orange Book

Download PDF

Parents of children with congenital heart disease

Find out about the experience of having a child with congenital heart disease by seeing and hearing people share their personal stories on film. In partnership with the British Heart Foundation, researchers travelled all around the UK to talk to the parents of 30 children in their own homes. Find out what people said about issues such as diagnosis, talking to your child, surgery and impact on family. 

Find out more

Social media, please click the icons and keep up to date!

A patient's story

Download PDF

Join the Patient and Family Engagement Group

Contribute to forums and future developments of the network

Don't be shy, get in touch with us today to join! nuth.enquiries-nencchdn@nhs.net

Download PDF

Transition Survey

What is important to you?

What is important to you when transitioning from paediatric to adult CHD services? 


Please click here to fill out our feedback form and have your say, your voice is important!

Download PDF

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