Part of Guy's and St Thomas' NHS Foundation Trust

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    The newsletter for Trust members with an interest in heart and lung care

       January 2022

Disability History Month:

Exploring non-visible disabilities

To mark Disability History Month (18 November – 18 December 2021) staff at Royal Brompton and Harefield hospitals shared on camera – some for the first time – their experiences of living with a non-visible condition, an impairment that is not immediately obvious to others.

Exploring how we might re-think disability in a work environment, ‘More than meets the eye’ is a series of short films that tell the personal stories of staff members’ lived experiences of non-visible conditions, how they have navigated barriers and disability stigmas in the workplace, and why visible and non-visible disabilities are not always mutually exclusive.

The first film in the series introduces Camilla Mills, therapy assistant practitioner, and Ras Kahai, cardiorespiratory dietitian, who discuss the ‘disclosure dilemma’: the decision to conceal or reveal a disability in a work setting, faced by many disabled people as they navigate fears of stigma, judgement and discrimination. Watch the film.

In the second film, we meet Mark Townsend, diagnostic bookings administration assistant, and Robert Craig, director of operations and partnerships and executive sponsor of Royal Brompton and Harefield’s staff Disability and Wellness Network (DAWN). Watch the film.

Royal Brompton hailed for excellent

care of young people

Children and young people have reported overwhelmingly positive experiences as patients at Royal Brompton Hospital, according to a new report. The biennial Care Quality Commission (CQC) Children and Young People’s Patient Experience Survey 2020 revealed that Royal Brompton Hospital performed ‘much better than expected’ for the experiences of patients aged 8 to 15. The hospital witnessed a 7% increase in parent satisfaction with overnight stays.

Victoria Felton, Head of Nursing for Children's Services, said: “I am so proud of the whole paediatric team for this amazing achievement. This report shows the consistent hard work of the team providing expert care and support to all our children and their families.”

The hospital plans to focus on specific areas for quality improvement by engaging with young patients. To read more about this work, click here.

Non-medical staff celebrated at annual research showcase

Virtual exercise programmes, handheld echocardiography and artificial intelligence were amongst some of the exciting projects at this year’s Annual Research Showcase (ARS), an annual celebration of the incredible research spearheaded by non-medical staff at Royal Brompton and Harefield hospitals.

At the event held in December, Haifa Lyster, consultant pharmacist, was invited to give a keynote speech, and share her extensive experience of being a researcher as well as tips for those starting out in research. Read more.

Nurses complete new CapitalNurse

BME Nursing Programme

First-of-its-kind maternal health clinic and antenatal classes for expectant mothers with cystic fibrosis

Royal Brompton Hospital has set up a new service specifically for women with cystic fibrosis (CF) who are pregnant. This service was created due to the rise in the number of pregnancies in women with CF over the past 12 months.

This first-of-its-kind clinic involves a multidisciplinary team of CF specialists, including consultants, psychologists, nurse specialists, dietitians, pharmacists, physiotherapists and clinical genetic counsellors, who meet virtually with the pregnant women, and their partners where appropriate. This can take the form of group meetings, such as exercise classes, or one-to-ones for more personalised advice on having a healthy pregnancy with CF.

The rise in pregnancies has been linked to the availability of a new CF medicine in the UK, Kaftrio, which stops the build-up of sticky mucus in the organs that causes many of the symptoms of CF. Royal Brompton patient Emilia Hunt had been trying to conceive for almost 10 years, before getting a positive pregnancy result within weeks of starting Kaftrio. She said: ‘My pregnancy was totally textbook, and Jesse is now healthy and thriving at 10 weeks old. The clinics at Royal Brompton worked really well and it was lovely meeting other new mums in the same position as me.”

Read more.  

Upcoming Council of Governors elections

If you have an interest in helping us continue to deliver the best possible care to our patients, then please consider standing for election in the upcoming Council of Governor elections.

Our governors play a key role in representing the views of our patient, public and staff members, ensuring that our services meet the needs of our communities.

Upcoming elections will be for the following governor seats:

1 seat in the patient carer class

2 seats in the public constituency area around Guy’s and St Thomas’ hospitals

1 seat in the public constituency area around Royal Brompton and Harefield hospitals

1 seat in the public constituency area, the Rest of England and Wales

If you are registered as a member in one of the constituencies noted above, we will be contacting you with further details about how you can participate in the election process. Please note there are no patient governor seats open for election in these upcoming elections. 

We are hosting a Governors Awareness session on Friday, 11 March 2022 and invite anyone interested to join this session to learn more about the role of governors and the election process, including the timetable.

        Meet our Peer Leaders

We’re pleased to introduce you to Rodica Lamba and Martin Rolfe who were part of a select group of members to complete the Peer Leadership Development Programme run by the Personalised Care Group, NHS England and NHS Improvement.

Here’s what they had to say about what motivated them to take part, what they learned and how they intend to use the skills and knowledge they gained on the course to give something back. 

See the events section below to learn more about how you too can become a peer leader.  

Rodica Lamba

I have been a patient at Harefield since 2018. I am lucky to have benefited from the best care and great staff, and for that I am very grateful.

Martin Rolfe

I have been a patient at Royal Brompton Hospital since 1990, when paediatric care ended for me at the Royal Berkshire Hospital in Reading.

I became aware of the Peer Leadership Development Programme (PLDP) when I answered an advert to get involved with the Apollo programme at Royal Brompton Hospital. I am an IT professional, and I felt my skillset would be useful to the team, although I have only managed to take part in surveys!

What did you find the most interesting

or enjoyable aspect of the course? 

Rodica:

I found the course overall both challenging and interesting, but I particularly enjoyed Step 3, the online sessions, where I had the opportunity to meet great professionals and amazing people, all with unique stories.

I enjoyed team exercises, communicating and developing plans with people I had never met before yet who somehow seemed so familiar.

Listening to the stories of the other participants who have had different experiences and share similar points of view has enriched my vision.

The experiences and ideas of different people, constructively put together, has opened ways of seeing otherwise invisible aspects, situations and solutions, and this is the one of the main goals of being a Peer Leader.

Martin:

For the past 5 years I have been working as a volunteer for the CF Trust enjoying sharing my opinions about the disease and what I want from research and the CF Trust. The PLDP made me realise that my lived experience can be helpful outside of the sphere of Cystic Fibrosis care to help make hospital life easier for others.

Rodica:

I have a better understanding of how the NHS works, the importance of  being a Peer Leader and Personalised Care. I am more confident in managing my care and asking about my choices, and I hope I will soon be able to help others with the knowledge gained during this course.

Martin:

I’d like to use my new knowledge and confidence to get involved with Royal Brompton Hospital to help guide and advise on what personalised care means to patients.

What would you like to do with the knowledge and skills you have gained? 

Member events 

All member events are free

 

Focus on Pulmonary Hypertension

Thursday, 20 January

11am – 12pm

Online

To register, please click here. 

Join us to gain insight into pulmonary hypertension (PH), a heart and lung condition where the pressure in the pulmonary arteries (the blood vessels that carry blood from the heart to the lungs), is higher than normal. Symptoms can include shortness of breath. Dr John Wort, consultant and the clinical lead for the PH service at Royal Brompton & Harefield hospitals, will discuss symptoms, diagnosis, novel treatments and current research. The PH team at Royal Brompton Hospital works closely with colleagues at Guy’s and St Thomas’ and the only charity in the UK supporting people affected by the disease, Pulmonary Hypertension Association, UK.

Physiotherapy and diet- rehabilitation and beyond

Wednesday, 9 February

11am – 12pm

Online

To register,  please click here.  

Please join us to meet members of our physiotherapy and dietetics team who will discuss how and why they work so closely with clinical colleagues to support our heart and lung patients. Participants will gain insight into the importance of diet and exercise, practical advice on how to make appropriate choices and how to build healthy eating habits and exercise, including breathing exercises, into your routine.

Peer leadership Development Programme

Self paced learning-sign up throughout February

Online

To register, please click here. 

The Personalised Care Group, NHS England and NHS Improvement believe that the only way to ensure the NHS meets everyone’s needs, is to involve people who use NHS services, especially those who are living with a long-term health condition, disabled people and family carers. They have developed a three-step programme to develop peer leaders to work collaboratively with the system to shape and influence how heath and care is delivered.

Steps 1 and 2 of this programme are suitable for a wide audience who are eager to learn more about how the NHS works and the role of personalised care. These steps are completed online. Step 3 is a combination of self-paced online and four all day group facilitated online sessions focused on personal development.

The programme is free and members who complete steps 1-3 will be considered as candidates for the Peer Leadership Network at Royal Brompton and Harefield hospitals. This network will help shape future patient led engagement in collaboration with the public and patient engagement group.

Governors awareness session

Friday, 11 March

11am – 12pm

Online

To register, please click here.

Join this informative event if you would like to find out more about governor roles and the election process ahead of the upcoming governor elections. We encourage people of all backgrounds and experiences to put themselves forward to help make sure that the voice of our Council of Governors is representative of the diverse communities that we serve. Nominations will open on Tuesday 1 March 2022. To learn more about the role of governors and the upcoming elections, please click here. 

To view a full listing of upcoming events and to access recordings to previous member events, click here.

Road to Recovery- News from Royal Brompton & Harefield Hospitals Charity

For some Covid-19 patients, fighting off the virus is only part of the process of getting well. Bill was critically ill with Covid-19 and was in a coma for a month. He was treated with ECMO (extracorporeal membrane oxygenation) at Royal Brompton Hospital and is back home now. You can watch Bill tell his story in his own words in this video.

Bill’s physical recovery is ongoing, but the experience of being severely ill has left him with psychological trauma. Bill said: “The weird thing is, now [my coma dreams] can come back to me quite easily. Something might trigger it off, and I’ll think ‘if I’m not careful here the whole thing will unravel again,’ like a rolled-up carpet, and I’ll have the whole nightmare again.”

To help patients like Bill, Royal Brompton & Harefield Hospitals Charity are raising funds for a new service that will provide online and accessible one-to-one and group counselling to help Covid-19 patients with their mental recovery. It will also be offered to family members who may require support to deal with the emotional aftermath of seeing a loved one ill.         

The funds are being raised via our Road to Recovery: Post Covid Mental Health Programme appeal and you can donate or fundraise via our website.

Thank you for your generosity.

To learn more about your Trust membership, share your feedback or update your contact details, please contact Nancy Dickinson at [email protected]

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