Patient, Carer and Public Involvement in COVID Recovery

Patient, Carer and Public Involvement in COVID Recovery

This work was commissioned the Joint Programme for Patient, Carer and Public Involvement in COVID Recovery, a partnership between Guy's and St Thomas' NHS Foundation Trust (GSTT) including Evelina London Children's Hospital and Royal Brompton and Harefield hospitals (RBH) and King's College Hospital NHS Foundation Trust (KCH).

The programme is funded, over two years, by GSTT Charity and supported by KCH Charity to ensure the involvement of patients, carers, and the public in ongoing changes and the development of services necessitated by the COVID pandemic.

The programme is working with patients, carers and the public to understand:

  • shifts in public attitudes and behaviours toward accessing care in different parts of the healthcare system and the risk that patients and the public may retract from accessing the care they need now or in the future
  • how changes made, or being made, continue to affect patients, their families and carers experiences’ of accessing care, using new or rapidly changing models of care
  • variations in experience of care between different protected characteristics
  • how we can improve and further develop services

As part of the programme’s activities, an extensive scoping, identification and prioritisation exercise was carried out to refine the focus of the programme. This resulted in the prioritisation of the following three projects:

  • Virtual access to care
  • Waiting for treatment and self-management
  • Long COVID

London South Bank University’s Health Systems Innovation Lab and People’s Academy will support the delivery of the three projects.


Workshops

Overview

London South Bank University (LSBU) has been asked to work with the NHS to bring together local people and health professionals to improve these services.

We do this through a series of discussions where everyone shares their experiences and ideas to work out what is possible in the future; and tries these ideas out in practice, to see what works. This is not just about talking; it’s about doing things differently and working together. To do this we will be running a series of workshop discussions and you are invited to participate in the first workshop. If you would like to continue after this workshop, we will invite you to the future workshops

Long COVID

Dates:

Long Covid Coproduction Workshop – Mixed boroughs SE London 19th April

Waiting for treatment

Dates:

Waiting for 1st App (Cardio) - 20th April 2022, 12:00 - 15:00

Waiting for 1st App (Cancer) - 21st April 2022, 12:00 - 15:00

Waiting for Treatment (Ophthalmology) - 27th April 2022, 12:00 - 15:00

Waiting for Treatment (Orthopaedics) - 28th  April 2022 - 12:00 - 15:00

Waiting for Work Up (Children and young people) - 4th May 2022, 12:00 - 15:00

Virtual access to care

Dates:

Trauma & Orthopaedics - 29th April 2022, 14:30 - 17:00

Services with remote monitoring: IBD -  5th May 2022, 11:30 - 15:00 (face-to-face workshop)

Urology - 17th May 202211:30 – 15:00 (face-to-face workshop)

Services with remote monitoring: IBD -  18th May 2022, 14:30 - 17:00

Renal -  19th May 2022, 11:30 - 15:00 (face-to-face workshop)

Lung Disease -  23rd May, 14:30 - 17:00

Lung Disease -  25th May 202211:30 - 15:00 (face-to-face workshop)

Virtual Pioneers - 26th May 2022, 14:30 - 17:00

HIV - 27th May 2022, 14:30 - 17:00

Please contact healthlab@lsbu.ac.uk or call  07909534296 if you wish to attend one of the workshops


Example workshop programme:

12:00-

1:00

Please join us between 12 and 12.30 so we can:

·     Check your tech and make sure you know how to participate in the workshop

·     Check your details and make sure we have everything we need so we can keep in touch

·     You can ask us any questions

We will then pop you in a breakout room where you can turn your video and microphone off and go and get a drink/ have your lunch. We will automatically join you into the main meeting at 13.00 so please be back and ready for that time.

1:00-

1:05

Formal Welcome

Logistics & Principles for the day

1:05-

1:30

What brought me here today? Sharing why we care about Long Covid services.

1:30-

1:50

Sharing stories  Tell us about your experience . How has it felt for you and what has helped round here? (Round 1)

1:50-

2:10

Break

2.10 – 2.30

Sharing stories  (Exercise – round 2)

2.30 – 2.50

Asset Mapping Exercise – exploring what has worked in our locality.

2.45 – 3.00

Wrap up and next steps - who else needs to be here

FAQ

What is this project about?

This project brings people and health and care professionals together for an honest discussion about what can be done, both by the NHS but also by people and communities.

How will we do this?

We are asking citizens experience of accessing and not accessing Long COVID services to collaborate/work with us to improve services.  We can only do this by talking together and testing out our ideas.

We start in workshops which bring together 20-30 people, citizens (patients, carers) with health professionals (doctors, nurses, therapists, administrative staff, the IT services).

We need to hear everyone’s experiences and ideas to work out what more is possible. We then put these ideas into practice, testing out what works. This is not just about talking, it’s about doing.

Do I have to take part?

No. It is entirely up to you to decide. If you do not want to take part that’s OK. Your decision will not affect the quality of care you receive.

What will I need to do if I take part?

*            If you agree and consent, your healthcare professional will share your name and preferred contact details with LSBU so they can send you the information for the workshops. The contents of your medical records will not be shared. We also ask for information including age group, ethnicity, gender, employment status, caring responsibilities, digital technology access and disabilities for monitoring purposes.

*            If you later decide not to take part you are free to withdraw at any time, without giving a reason, by contacting LSBU (see below)

*            If you choose to take part, you will be asked to sign a consent form before the workshop. The consent form will be stored by the NHS and a copy of the consent form will be kept by LSBU.

What are the disadvantages/risks of taking part?

There are no risks involved in taking part in these workshops.

What are benefits of taking part?

We hope you will enjoy contributing to the development of services to help improve the services the NHS offer to you and people like you now and in the future. After the first workshop, if you would like to remain involved, or help your local community provide support then there will be the opportunity to keep participating.

What will happen to information collected about me?

If you agree, your contact details will be shared by your healthcare professional with the LSBU team.

The workshops are themed according to health issues e.g., people with diabetes, so you will be in a group which identifies you as someone living with this health condition, but this will only be known within the workshop. You will not be identified in any publications or shared materials outside the workshops.

The information LSBU will be given is your name and your preferred contact details (email / address / telephone). We also collect information about age group, ethnicity, gender for monitoring purposes.

LSBU will keep this information for 3 months and only use it for the purposes of this work. This information will not be shared with anyone else. You have a right to request that your personal information is deleted at any time.

The information you discuss during the workshops will be anonymised and you will not be identified in any information presented or published later on.

If you wish to withdraw from this study during a workshop the information you have provided up until you withdraw may still be used (but will be anonymised).

Confidentiality and your rights

The contents of your medical records will not be shared.

If you agree to take part in this work, you will need to sign and date a Consent Form which we will provide on the day. The form will be stored by your hospital and a copy will be kept by the researchers.

Your GP will not be informed if you take part (unless they are also at the workshop).

Results of the work

At the end of the work the ideas and solutions generated during the workshops will be shared across the NHS locally and nationally and we will enter it for publication in a health journal.  LSBU are very happy to share with you with a copy of any progress summaries or publications (you can choose to be contacted with this information on the consent form).

Adjustments and accessibility

We can accommodate for any specific needs so please let us know if you require an interpreter, need any adjustments, have any access requirements or you would like to attend the workshop with someone else (e.g., a parent or carer).

Other information

Your health care professionals have not been paid for inviting you to join the workshops.

CONTACT US here:

You can email or call us at London South Bank University with any questions using the contact information below:

Email: healthlab@lsbu.ac.uk

Telephone: 07909 534 296 please leave a message and we will respond within 5 working days.

Scoping Desk Research

Here you will find the results of scoping desk research on Virtual Access to Care, Waiting for treatment and self-management and Long COVID:

1. Virtual access to care

2. Waiting for treatment and self-management

3. Long COVID

Graphics

Here you will find the  graphic illustration summaries of the desk research

1. Virtual access to care (PDF File 2,066 KB)

2. Waiting for treatment and self-management (PDF File 1,827 KB)

3. Long COVID (PDF File 1,998 KB)

Contact Us

For more information about the Joint Programme or the project, email us at healthlab@lsbu.ac.uk