Improving care for patients with heart and lung disease

As part of Guy’s and St Thomas’ NHS Foundation Trust, Royal Brompton and Harefield hospitals continue to work together with our colleagues, including at Evelina London Children’s Hospital, and King's Health Partners, to develop plans to transform heart and lung services for patients.

As part of these plans, we are inviting patients with a heart or lung condition, their carers and families to help us explore ways we might improve and provide heart and lung care in the future. This is an opportunity to design the kind of care you and your family and other patients will receive in the future.

How to get involved 

We are holding a series of online workshops and activities to hear the views of patients, their carers and families. Find out more the workshops below. 

If you have any questions, or to join our mailing list for future events, please email gst-tr.rbhkhp@nhs.net.

Workshops

Please note: this event has ended.

Date: Tuesday 25th May 2021

Who was the event for?

This workshop was for adults receiving care for congenital heart disease at Royal Brompton and Harefield hospitals, Guy's Hospital, or St Thomas' Hospital. 

What was it about?  

The workshop was hosted by Verve Communications and was the first in a series of workshops for congenital heart disease patients, their families and carers. The workshops are designed to:

  • Encourage participants to talk about their experiences and views of receiving hospital care 
  • Bring together groups of patients, their families and carers, to discuss outpatient services and condition management
  • Answer any questions arising out of the workshop discussions.    

In Autumn 2021, Playing ON Theatre Company will host a series of weekly workshops for children and young people (aged 7 to 25) receiving care for a heart or lung condition at our hospitals. Playing ON Theatre Company will work with patients to explore their experiences of receiving care at hospital or at home, and their views on what heart and lung services could look like in the future.

Playing ON Theatre Company uses games, improvisation, writing, visualisation and much more to create performances inspired by the experiences of children and young people.

What is it?

Online drama and arts workshops for 7-11 year olds who receive heart and lung care at Royal Brompton, Evelina London or King’s College Hospitals. Sessions will take place online building to a ‘red carpet’ event from home. You can come to as many sessions as you like, and if you can’t attend any of them email rbh.khp@playingon.org.uk for other ways to get involved.

What will I get out of it?

You will experience exciting workshops, meet other young people and have the chance to share your opinion on your care as the art you make contributes to a wider partnership engagement project.

You will receive a certificate for taking part and be able to perform in the red carpet event for families and doctors – who can’t wait to see what the participants come up with. 

What do I need to take part?

You will need access to a computer with internet access in a private space where they can talk freely.

If you do not have access, please email rbh.khp@playingon.org.uk for support.

When will the workshops take place? 

From 10am - 11.30am on Saturday mornings in October with some extra sessions in half term. For more information on dates, and to sign up for the workshops, please click here

Starting in May 2021, we are running workshops for parents and carers of children receiving care for a heart or lung condition. 

During these workshops, hosted by Verve Communications, we will talk about the experiences of parents and carers of children, and their views on how we can deliver these services in the future. Each workshop will focus on a particular type of care including:

Fetal cardiology services

Date: Saturday 4 September  
Time: 11am - 12.30pm (BST) 

This workshop is for families who have accessed fetal cardiology services (services to diagnose and manage heart problems in babies before birth).

During this workshop, we will discuss patient and family experiences of fetal cardiology services. We will ask about your views on the care you received, what works well, and where services could be better.

Register for the workshop


Transition to adult care

Date: Thursday 9 September 
Time: 12.30pm - 2pm (BST) 

This workshop is for parents and carers of children and young people receiving care for a heart or lung condition.

During this workshop, we will discuss parent and carer experiences and views of the process of transition from children’s services to adult services. The discussion will seek to understand what works well and where improvements might be made.

Register for the workshop


Inpatient care 

Date: Monday 13 September 
Time: 5.30pm - 7pm (BST) 

This workshop is for parents and carers of children and young people receiving care for a heart or lung condition.

During this workshop, we will discuss parent and carer experiences and views of inpatient care. The discussion will seek to understand what works well and where improvements might be made.

Register for the workshop

Verve Communications and Playing ON Theatre Company will only use the information you provide to contact you about the activities for which you have registered. We will store your data securely, in compliance with the Data Protection Act 2018, and only those involved in the project (including Royal Brompton and Harefield and King's Health Partners partnership staff) will be able to access it.

Join our reference groups

We are looking for heart and lung patients (adults and young people) and carers to join our reference groups to make sure the views of patients and the public remain at the centre our partnership's proposals.

If you would like to find out more about our reference groups and how to join, please email gst-tr.rbhkhp@nhs.net.

Please note, these are voluntary (unpaid) roles. Travel and other reasonable expenses will be paid in accordance with our policy.

The group meets every two months, Tuesday or Thursday, 5.30pm to 7.00pm.

You can join the adults patient-public reference group if you are:

  • A current or former heart or lung services patient at Royal Brompton and Harefield hospitals, Guy's and St Thomas' or King's College Hospital
  • The parent or carer of patient receiving care for a lung or heart condition, at one of the sites listed above
  • A representative of a charity representing the interests of heart and lung patients.

The group meets every two months, Tuesday or Thursday, 5.30pm to 7.00pm.

You are eligible to join the children and young people's reference group if you are:

  • 13-25 years old and are receiving or have received care for a heart or lung condition at Royal Brompton and Harefield hospitals, Guy's Hospital, St Thomas' Hospital, Evelina London Children's Hospital or King's College Hospital children's services
  • The parent or carer of a patient receiving care for a lung or heart condition, at one of the sites listed above
  • A representative of a charity representing the interests of children receiving care for a heart of lung conditon.