Heart and Lung Transplant Service – Patient and Carer Survey

Last year the Department of Health and Social Care (DHSC) published the Organ Utilisation Group’s (OUG) February 2023 report ‘Honouring the gift of donation: utilising organs for transplant’.

The report included 12 recommendations for improving organ utilisation. One of the recommendations focused specifically on reviewing cardiothoracic (CT) transplant services, to ensure these services are sustainable, resilient and able to provide the best possible outcomes for patients.

DHSC is working with NHS England and NHS Blood and Transplant to deliver on this recommendation throughout the course of 2024.

The first stage of this work is to hear directly from CT patients, their families and carers, to understand their experiences of the CT transplant service.

These views are critical to informing the delivery of this recommendation and future improvements to the CT transplant service.

An online survey has been developed to capture views and responses are welcomed from people at all stages of the CT transplant care pathway.

Responses are welcomed from people at all stages of the transplant care pathway – whether being considered for transplantation, on the waiting list for a transplant or have received one or more transplants. The survey is primarily aimed at heart and lung transplant patients, families and carers in England, but comments from people in Wales, Scotland and Northern Ireland are welcomed.

The deadline for responses is 14th April 2024.

To access the survey please click HERE

Watch LAM Action’s 4th Virtual Meeting

Watch LAM Action’s 4th Virtual Meeting

LAM Action held its fourth Patients’ Meeting virtually on 10th June 2023.  The 3 and a half hour event included research updates from Prof Simon Johnson and Dr Debbie Clements, a look at nutrition and LAM, a discussion about dealing with the menopause if you have LAM and the Lucy Falconer Talk was presented by Dr Vera Krymskaya, Professor at the Perelman School of Medicine at the University of Pennsylvania. There are chapters marked within the recording so that you can move forward to view different talks.  You can watch the recording of the event here.


10.40 Prof. Simon Johnson – ‘Medical management of LAM in the UK’
11.10 Dr Caroline Hill – ‘Diet considerations for those with LAM’
11.50 Personal stories of living with LAM
12.05 Dr Debbie Clements – ‘New ways of treating LAM’
13.00 Dr Karen Morton – ‘Let’s talk about the menopause’
13.30 The Lucy Falconer Talk – Dr Vera Krimskaya – ‘LAM Research: Past, present and future’

June is Worldwide LAM Awareness Month

June is Worldwide LAM Awareness Month

June has been designated Worldwide LAM Awareness Month (WWLAM) by the Worldwide LAM Patient Coalition. WWLAM brings together the global community in a collaborative effort to educate the world about the signs and symptoms of LAM, raise funds to support women living with LAM, and share our global achievements to inspire researchers and clinicians to optimise therapies and find a cure for LAM.

Ride London 28th May 2023

Ride London 28th May 2023

Well done and a very big thank you to all 9 LAM Action riders who took part in Ride London on Sunday 28th May.

Team Johnson – Professor Simon Johnson and his daughter Naomi, and friends Oscar Mahony and Alex Slater
Simon Fairbrother Jo Pisani
Kev Jones and Lisa Cooper All these riders covered 100 miles
and Andrew Barham completed the 60 mile route
We really appreciate all that they did in training, fundraising and the event itself.
Here are their fundraising pages: