WELCOME
As is fitting coming into springtime, there’s a real theme of hope running through this issue.
People with long-term conditions such as lupus – an autoimmune disease, which affects around 70,000 people in the UK – often have to manage daily medication, regular hospital visits and ongoing pain and discomfort. At UCLH, often working with our academic partner UCL, we’re always looking for new and better ways to treat people with long-term conditions. Our cover story this edition involves a trial of CAR-T (Chimeric Antigen Receptor T-cell) therapy that could reduce, or even remove, the need for life-long medication for patients with severe lupus. Read more on pages 4 and 5.
Sleep apnoea, when your breathing stops and starts while you’re asleep, can be debilitating for those who suffer it. It can also lead to serious problems if left untreated. Now, two new treatments at UCLH are giving people with the most severe form of sleep apnoea hope for a more peaceful night’s sleep with a much more convenient way of treating this common condition. Read more on pages 8 and 9.
On pages 6 and 7 we have the incredible story of Lizzi Jordan, who was given life-saving treatment at UCLH when she contracted an E-coli infection. Lizzi was left blind, but she refused to give up hope of perusing her dreams, going on to win a cycling Gold at last year’s Paralympic Games in Paris. Lizzi, who was very deservingly made an MBE in the King’s New Year Honours List, came back to UCLH to pay tribute to those who treated her.
As with most cancers, the sooner and more accurately breast cancer is diagnosed, the better the hope of successful treatment. While UCLH already provides a comprehensive breast care service, a new piece of kit, funded by a donation from Derwent London to UCLH Charity offers a groundbreaking step in breast imaging. Read more on pages 10 and 11. On pages 12 and 13, find out what a day is like in the life of Dr Tehmeena Khan, a consultant in acute medicine who works on our UCLH@Home service, which allows patients to be discharged from hospital sooner and continue their treatment and recovery in their own home.
On page 15, we meet our new non-executive director appointees who bring their breadth of expertise and wealth of experience to further improve the services UCLH provides.
There’s also a chance for you to sign up to a new heathy volunteer registry to be part of research that could give hope for new treatments and better outcomes for all kinds of patients. Find out more and sign up on page 16. Plus, read about a project led by the matron of our Outpatients Department to make it a much more pleasant place to work and visit – page 14.
I hope you enjoy this issue!
David Probert,
Chief executive, UCLH
First patients in UK receive innovative therapy for lupus
The first patients in the UK have received an innovative treatment for lupus – an autoimmune condition which can cause damage to the heart, lungs, joints, brain or kidneys.
Researchers hope the CAR-T (Chimeric Antigen Receptor T-cell) therapy will reduce, or even remove, the need for life-long medication for patients with severe lupus.
The therapy works by reprogramming the body’s own immune system to recognise and attack problem cells – in this case, those driving lupus inflammation.
The international research study is being led by UCLH and UCL and sponsored by CAR-T cell therapy company Autolus.
UCLH consultant rheumatologist and honorary associate professor of the UCL Division of Medicine Dr Maria Leandro said: “This trial builds on the research UCL and UCLH rheumatologists have been conducting for the past 25 years on the benefits of killing B cells in some autoimmune diseases.
“We have seen the effectiveness of CAR-T therapy in treating cancer, particularly blood cancers, and hope we can replicate this in autoimmune diseases, starting with lupus.
“Our early phase trial aims to recruit 12 people worldwide and we hope to replicate the results of a small German trial which showed an improvement in lupus patients treated with CAR-T therapy.”
Dr Leandro added that this kind of innovative research work is only possible thanks to close collaboration by teams in rheumatology, renal medicine and haematology.
Katie Tinkler, 50, was diagnosed with lupus when she was 20 and was eventually forced to give up her job as a fitness instructor because of the debilitating pain and fatigue caused by the condition.
Over the years, she has had to spend more and more time in hospital.
Katie was one of the first patients to receive the CAR-T therapy for lupus at UCLH.
“I am beyond excited,” she said. “Up until now, there’s never been anything for lupus that is a possible cure.
“There are so many autoimmune diseases out there, and there’s 70,000 lupus patients in the UK, so I hope the results from this trial give people hope that everybody who has an autoimmune disease will be able to have an end point.”
UCLH consultant haematologist and UCL Cancer Institute researcher Claire Roddie said: “It is hugely exciting to be able to offer this novel treatment to our lupus patients.”
I am beyond excited. Up until now, there’s never been anything for lupus that is a possible cure.
What is lupus?
• Lupus is a long-term autoimmune condition that causes joint pain, skin rashes, tiredness and can damage organs.
• It is an uncommon condition with around 90 per cent of cases occurring in women.
• The condition tends to appear between the ages of 15 and 50.
• There is currently no cure for lupus, and sufferers usually need life-long medication to manage symptoms.
Paralympic champion and former UCLH patient made MBE
Lizzi Jordan, who received life-saving treatment at UCLH before going on to win a gold medal for cycling in the 2024 Paralympic Games, paid tribute to UCLH staff as she was made a Member of the British Empire (MBE).
In the winter of 2024, Lizzi Jordan received a letter informing her that she would be made MBE in the King’s New Year Honours List 2025. In a few days, she was planning to visit UCLH to meet the staff who had saved her life in 2017.
The MBE and the visit to UCLH were, Lizzi said, a lovely way to round off the year, which was one of amazing achievement for the athlete.
Lizzi, 27, won Gold in cycling at her debut Paralympics in Paris, just seven years after she contracted an E-coli infection which nearly killed her and led her to lose her sight.
Once she returned from Paris, Lizzi asked to see the team who had saved her life. In December, she came to visit, bringing her medals and parents, to share her joy with teams from haematology, cardiology and critical care who cared for her.
Lizzi was a first-year psychology student at Royal Holloway University in London when, aged 19, she contracted an infection which led to multiple organ failure, including collapsed lungs and heart failure in a very short period.
She was placed in a medically induced coma for eight weeks, leaving her with no recollection of the events that transpired, only what her parents and medical staff shared with her afterwards.
Doctors informed her parents on several occasions that she might not survive, requiring them to say goodbye multiple times.
Thankfully, she pulled through, but the life-changing illness left her blind, and she had to relearn how to do almost everything.
Before the incident, Lizzi had been a keen horse rider. After being discharged from hospital, Lizzi showed amazing determination, getting back in the saddle to continue her beloved horse riding.
She then moved on to cycling, eventually joining the paracycling team and, in 2022, winning Silver at the UCI Para-cycling Track World Championships in France.
Speaking of her visit to UCLH, Lizzi said: “It was an absolute honour to reconnect with all the incredible people that saved my life in 2017. It truly was a day to remember and I hope everybody enjoyed it as much as I did.”
It was an absolute honour to reconnect with all the incredible people that saved my life in 2017.
New implant gives sleep apnoea sufferers the chance of a good night’s sleep
Natalie Boller was given a new implant to treat her sleep apnoea at UCLH, which she says has given her the first full night’s sleep in 10 years.
Obstructive sleep apnoea (OSA), when your breathing stops and starts while you’re asleep, can be unpleasant for those who suffer it – not to mention those they share a bed with! It can also lead to more serious health problems if left untreated.
Traditionally, treatment involves continuous positive airway pressure (CPAP), which requires users to wear a mask at night to receive pressurised air, but many patients find it difficult to get used to sleeping with this machine.
At UCLH, we’re now offering patients a choice of two nerve stimulation devices to manage the condition instead.
Natalie Boller had the treatment, which involved having a chip inserted under her chin that stimulates the nerves and opens the airways without waking her up.
After getting home, she told the BBC: “I and my husband have just had our first good, full night’s sleep in 10 years.”
While Natalie said she understood that adjustments may need to be made over the coming months for the implant to be fully effective, she added: “To have such a positive result on the very first night of use is really beyond expectations.”
Ear, nose, throat and sleep surgeon Mr Ryan Chin Taw Cheong, who fitted the implant, said: “This really is the next generation of sleep surgical care. With the implant active you can visually see the muscles being stimulated, moving the tongue up and out of the airway, clearing the blockage.
“You can’t see the implant at all during the day and at night all the patient has to do is put a sticky pad over the place where the chip was inserted and fall asleep.”
What is sleep apnoea?
Obstructive sleep apnoea (OSA) is the most common sleep breathing disorder and is the result of repeated obstruction of the upper airway during sleep. Patients present with a variety of symptoms including snoring, excessive daytime sleepiness, headache and insomnia.
As well as being unpleasant for the person suffering it and potentially disturbing for their partner, sleep apnoea can, if left untreated, lead to hypertension, strokes, heart attacks, diabetes and various other issues which affect quality of life.
New equipment to enhance breast care at UCLH
A donation to UCLH Charity from long-term partner Derwent London has helped fund equipment that will enhance breast care at UCLH.
UCLH provides a comprehensive breast care service, treating patients with breast cancer as well as benign breast conditions.
Thanks to a donation from Derwent London, a property investment and development business, we have been able to add a new injector machine, which allows us to also offer Contrast-Enhanced Spectral Mammography (CESM).
This supplements MRI tests and can provide quicker diagnostics in some cases. It is also beneficial as some patients, such as those with certain allergies, pacemakers or extreme claustrophobia cannot undergo an MRI scan.
UCLH radiographer Craig Harris-Scully explains how the CESM will improve UCLH’s breast service: “This specialised kit will help the breast team to provide a more streamlined service for patients, detect and therefore treat breast cancer more rapidly. It will also free up valuable MRI space so more patients can be treated.”
The equipment made a difference in its first few days of operation, said Craig: “Following the training of some of our mammographers, we completed several cases successfully in the breast one-stop clinic.
“One patient showed more disease than initially expected, so has already had their second look ultrasound and can proceed straight to further biopsies, shortening the length of the current diagnostic pathway.”
Stuart Lavery, divisional clinical director for Women’s Health at UCLH, said: “We would like to thank Derwent London for their generous donation which will help us to continue to offer the latest available treatment to the thousands of patients who come to the UCLH breast care service each year.
“Awaiting diagnosis can be a very stressful, difficult time so anything that can make this quicker and more efficient, will improve our patients’ experience of care.”
This specialised kit will help the breast team to provide a more streamlined service for patients
Dr Tehmeena Kahn, Acute medicine consultant
Dr Tehmeena Kahn is the consultant for UCLH@Home. This is a new role to support our virtual ward services, which allow suitable patients to be discharged from hospital with nurses visiting them at home.
What does your role involve on a day-to-day basis?
My role is to provide clinical oversight and support to nursing staff who visit and treat patients in their own homes.
In the mornings, I typically review our patient lists in the Acute Medical Unit (AMU) and those admitted to the Same Day Emergency Care (SDEC) unit to see if any patients are suitable to be treated via UCLH@Home. I then support our team to discuss this option with patients and ask for consent – we recognise it’s quite a personal thing having a group of people come into your home!
I’m then available should the nurses need to contact me; if there’s anything they’re concerned about when they’ve been to a patient’s home, or if a patient has contacted them outside visit times and they’re worried. In many cases, such as queries about medication, we can resolve this on the phone.
For some patients, the hospital might not be the right environment. For example, if someone’s got a history of dementia, or if they’re frail, being in hospital away from their family and familiar surroundings might make them more confused and agitated. If we can provide the care that we can give them in the hospital, but in their own homes, that may be safer for that patient. There is so much that we can do in the home, from diuretics to blood tests.
We can also continuously monitor patients remotely via special devices which trace heart rate, respiratory rate, oxygen saturation etc.
What skills are important for this role?
Communication skills are very important because the team needs to know that I’m there if they need any advice.
You must also have broad clinical knowledge and skills to assess patients remotely based on their test results and observations, and to provide clinical advice for a patient that you can’t physically see.
What are you most looking forward to achieving in this role?
There’s so much potential for this service. Six months ago, we were only getting five referrals a month but now we get up to five a week. While I provide clinical oversight, the nurses do a fantastic job because they also have a lot of responsibility. They’re going into people’s homes and making their own judgement calls.
We have a strong network, however, and are supported by colleagues both remote and in the hospital.
I look forward to us all continuing to work closely together and seeing the service develop and support more patients.
Work with us!
We’re looking for people who will live our values and help us make a difference to the thousands of patients who come to us for treatment every year. We believe that every member of staff plays an important role in our vision, whatever their role.
Updating our Outpatients Department
An ambitious project has helped make the University College Hospital Outpatients Department much more pleasant and easy to navigate.
The project, led by Cliona Curran, matron for Medical Specialties and Outpatients, came about when things started to open up following the restrictions of the COVID-19 pandemic.
Cliona said: “We wanted to improve the space for patients and staff, for example we wanted to create a staff room with storage facilities.”
The project also focused on patient experience. The walls of each clinic were painted in different colours, distinguishing the previously very similar-looking areas so that patients can find their way around more easily (photo 1). New signage was installed to further improve wayfinding (photo 2).
The department also benefitted from the installation of a formal reception desk, which helps to ensure patients are directed to the right place efficiently, meaning there are no longer lengthy queues, as had often been the case previously (photo 3).
Cliona said: “We see 600-800 patients a day, so it’s important the department is easy to navigate and a pleasant place for patients and staff.
“We wanted to make it easier for people to find their way around using colour coding and signage, make better use of space and create a warmer, less clinical feel with art on the walls. It’s been a huge project, but we’re getting lots of good comments, so we’re really pleased at how it’s turned out.”
Cliona also worked with UCLH Charity and the fundraising team, to improve the space by commissioning artwork by Laura Gee, who featured in the UCLH Charity Gardens exhibition. These eye-catching pieces can be seen dotted around the department for all to enjoy (photo 4).
UCLH welcomes non-executive director appointments
UCLH has announced two new appointments to its Board. Dr Jonathan Broomberg, is now a non-executive director and Arif Ahmed is associate non-executive director.
Jonathan is currently the CEO of Vitality Health International and global head of health insurance for the Discovery Group. He has had a long and varied career in healthcare, including serving as special advisor to the Minister of Health of South Africa in the first post-apartheid administration. He also served for five years on the first technical review panel of the Global Fund against AIDS, TB and malaria.
Arif is an entrepreneur and private equity investor in healthcare, technology, e-commerce and B2B services companies. He spent the early part of his career in the IT industry and has been a management consultant at several independent consultancies operating largely in the fields of IT, strategy, healthcare and e-commerce.
Baroness Julia Neuberger, UCLH chair, said: “We are delighted to welcome Jonathan and Arif to the Board. We look forward to using their breadth of expertise and wealth of experience to further improve the services UCLH provides to its patients.”
Are you interested in becoming a UCLH governor?
The 2025 governor election process will begin in May and we will be looking for one public governor, five patient governors and two staff governors.
Come along to our prospective governor event on Thursday 22 May, 5-6pm to find out more about the governor role and how to apply.
To register to attend or for more information, please contact uclh.members@nhs.net
Would you like to help shape the future of UCLH?
Would you like to receive information about upcoming UCLH events, news, and opportunities for involvement? We welcome patients and the public* over the age of 14 to join us as a member.
*Public: resident within the London Boroughs, the City of London, Berkshire, Buckinghamshire, Essex, Hertfordshire, Kent and Surrey.
UCLH launches healthy volunteer registry for research
Members of the public can now join a registry of healthy volunteers willing to be contacted about taking part in research.
Launched by the National Institute for Health and Care Research (NIHR) Clinical Research Facility (CRF) at UCLH, the registry is for studies taking place at the CRF, which need healthy volunteers.
Participants in healthy volunteer studies are likely to be compensated for their time and participation – with compensation depending on the nature of the research study. They will also be helping to answer important questions about new medications.
Being a healthy volunteer can mean different things depending on the particular study recruiting, but for many studies, in broad terms, it means someone with no significant health conditions.
Healthy volunteers provide researchers with crucial data because their health information can be used as a comparison with people who have a specific disease or condition.
People who sign up to the registry will be contacted by email about future healthy volunteer studies taking place at the NIHR UCLH CRF.
As a volunteer on the registry, if you are contacted about a new study, this does not mean you are automatically eligible to participate. The registry is a way of informing people of new studies they may be interested in supporting if they are eligible.
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