October 2023
Issue 5
Virtual reality therapy
Hairdressing on wards
Fundraising heroes
New dog volunteer
volunteer service offering patient peer support for those receiving kidney care has been relaunched at the Royal Free Hospital after COVID-19 put it on hold.
Patients, including those receiving a kidney transplant or having dialysis, are put in touch with a volunteer who has also received renal care at the hospital.
Talking things over with someone who has been through a similar experience helps patients to manage any anxieties they may feel, which can lead to better health outcomes as well as greater peace of mind.
Adesola Onalaja (pictured) is one of the Royal Free Charity’s 10 renal peer support volunteers.
She said: “I’ve been on dialysis for 16 years and for the past eight years I’ve been receiving it at home. I enjoy talking to people who are being encouraged by their care teams to switch to home dialysis.
“I understand the nervousness because that’s how I felt, and I can offer a lot of encouragement that they can do this and that it is perfectly safe, with the proper training.
“I can talk them through it because I went through the process myself. It’s a very rewarding feeling to be able to give them that support and help them on a path to more self-reliance.”
atients receiving cancer treatment at Chase Farm Hospital are taking part in a range of immersive experiences using simulator headsets. The handheld headsets provide 360-degree visuals, allowing patients to be taken to completely different environments, including tranquil forest walks and deep-sea diving.
The virtual reality therapy, for patients of the hospital’s chemotherapy suite, is funded by the Royal Free Charity and delivered by a specially trained team of volunteers.
Serhat Kerakas is one of the volunteers who has been introducing patients to the transformative potential of the new technology. He visits the infusion suite at Chase Farm Hospital regularly to guide patients through the use of the headsets, ensuring that the experience is both enjoyable and safe.
Serhat’s motivation for volunteering stems from his keen interest in healthcare innovation. “We are starting to see virtual reality be used for more things and using it in healthcare seemed like a great idea,” Serhat shared. “It is a different way of helping the mind escape.”
Serhat volunteers alongside studying for an MSc in experimental pharmacology and therapeutics. He added:
“I am interested in drug development and discovery; I enjoy being proactive. The world is forever evolving and we can never know what is on the horizon. I think we saw that with the COVID-19 pandemic. Anything we can do to be prepared for the future will make a difference and innovation is a part of that.”
▼ Volunteer Serhat Kerakas showcasing one of the immersive simulator headsetsIt was never my intention to run 60 miles for charity. Probably because I felt quietly convinced that I wouldn’t be able to complete the distance and I didn’t want to let anyone down. I had initially undertaken the challenge to see if I had it in me – some incarnation of a mid-life-crisis, no doubt – but when my father asked if I might do it for a slightly worthier cause, of course I said yes.
obert de Segundo’s father, William, was diagnosed with a rare disease called amyloidosis in 2006. In the intervening years, Robert witnessed the effect of the disease on his dad: “He managed in a very remarkable way, keeping it to himself. So much so, that when I got in touch with old friends of his about sponsoring my run, many of them had no idea he was suffering from it.
“However, one aspect of the disease did affect him quite conspicuously. He had always been very active, and he had spent a lot of his time travelling through his work and other endeavours – over 120 different countries, I remember him once telling me. But the disease made it harder and harder for him to do these things. And now he can do them no more.”
Earlier this year, Robert raised more than £13k to fund amyloidosis research by running a 100km ultra marathon between London and Brighton.
It took him just over 16 hours to complete the gruelling challenge, but he said stopping never crossed his mind: “If I was running just for me, I could have stopped. I suspect I would have. But as I ran, I thought often about my dad, and it might sound a bit weird, but my memory of the day was a pleasant one. Dare I say it, I found the whole experience rather enjoyable!”
▲ Robert de Segundo with his father, William and family
▲ Robert raised over £13k for amyloidosis research for his 100km marathon
hree brothers from Wigan have raised more than £120 for amyloidosis research by completing the equivalent of a marathon in a month.
Henry, aged 13, Oscar aged 11, and sevenyear-old Matthew ran, walked and cycled their way to 26 miles in June.
They wanted to raise money for research into amyloidosis to support their grandmother who has been receiving treatment for the rare disease since her diagnosis seven years ago.
Mum Caroline said: “Amyloidosis is a difficult illness to explain to children, but they understand that it means Grandma can feel a bit poorly sometimes.
“I’m really proud of them. They’ve recognised that this is a disease that needs more research, and they came up with the idea of how to raise the money by themselves.”
The family covered the distance mostly by walking, including forest and canal walks and seaside walks’ while on holiday in Jersey.
Fact file
This fundraising effort is not the first time the family has raised money for amyloidosis research: Henry, the eldest of the brothers, has previously taken on a challenge to do 100 keep-uppies a day for a month.
• Amyloidosis is a rare disease caused by a build up of an abnormal protein called amyloid in organs and tissues throughout the body. There is currently no cure. The aim of treatment is to stop more of the abnormal proteins being produced and manage the symptoms experienced by patients.
• The National Amyloidosis Centre (NAC), based in the Royal Free Hospital, provides specialist diagnostic and advisory services for all patients with amyloidosis in the United Kingdom.
• The Royal Free Charity is the only charity in the UK directly supporting the work and research of the NAC.
▲ (L-R) Oscar, Henry and Matthew on one of their seaside walksesearchers from the Royal Free Hospital have embarked on a mission to unravel an intriguing medical mystery: could patients with liver disease hold vital clues which could predict the likelihood of developing severe complications?
Funded by a £10,000 grant from the Royal Free Charity, the aim of the research study is to identify biomarkers that could predict the development of liver-related complications such as infection, fluid overload, brain injury, and even death.
Professor Raj Mookerjee Royal Free Hospital consultant hepatologist, said: “We don’t currently have good indicators that can tell us if someone with cirrhosis (severe scarring of the liver) will develop serious complications. This is a crucial gap that needs urgent attention to give better care and outcomes for our patients.
“In our laboratory research, we developed some new blood tests that might predict increased risk of complications requiring hospital admission which could result in death, in people with liver cirrhosis.”
“Now we want to validate the potential value of these blood tests. We will use a much larger group of patients’ samples from prior studies, to see if our previous findings hold true. We also want to find out if these blood tests can predict other common complications related to liver disease.
“If our study shows that these blood tests really work, it could make a huge difference in how we manage liver disease. It might even help guide us to apply treatment early, to prevent further progression of their disease, which could improve the lives of people with liver cirrhosis and help them live better and longer.”
Liver disease is a serious health concern worldwide, with cirrhosis being a leading cause of illness and mortality. In the UK it ranks as the fifth highest cause of death.
Cirrhosis cannot usually be cured, but there are ways to manage the symptoms and stop the condition getting worse.
▲ Prof Raj Mookerjee (centre) with research colleagues Dr Olivia Greenham and Dr Kohi Gananandancientists at the Royal Free Hospital are investigating whether the gut microbiome plays a role in the success of kidney transplants, thanks to a charity grant of £10,000.
The gut microbiome is the collection of all the bacteria that live within a person’s gut. They are crucial to digestion and helping the body to absorb nutrients. But their benefits go far beyond the digestive system and are required for the regulation of the immune system, normal brain function and mental health.
Alterations in the gut bacteria have been associated to a wide range of diseases, including kidney disease, viruses, fungi and other microbiomes and neurological disorders.
Researchers are investigating how changes in the gut microbiome might contribute to the rejection of a new kidney transplant in patients by making the immune system react strongly to it.
In lab work, the scientists have looked at the makeup of gut microbes in more than 100 people who either donated or received kidney transplants. They found evidence that, after a transplant, there were changes to their microbes, the molecules they produce, and the different immune cells in their bodies.
Further research funded by the charity could bring us closer to new treatments, such as microbiome supplements, to mitigate the risks and lead to longer survival of kidney transplants
Researchers will investigate whether two biomarkers, asymmetric dimethylarginine (ADMA) and symmetric dimethylarginine (SDMA), can help predict mortality and new complications in patients with liver cirrhosis admitted to hospital with events such as bleeding, infection and kidney failure.
The study will analyse plasma samples from about 200 patients who were followed up after being admitted to hospital with new complications, with samples taken at admission, and at day six.
If successful, the research could lead to better early intervention and potentially identify new drug targets for development, ultimately improving patient outcomes.
By correlating these so-called biomarkers with inflammation and liver disease severity, the researchers hope to shed light on potential new avenues for treatment and intervention.
The grant will provide the necessary support to carry out the data collection required to uncover insights into liver cirrhosis management.
oyal Free Hospital patients struggling with money worries can now access a specialist debt advice clinic thanks to a new partnership between the Royal Free Charity and Rooted Finance.
Patients who have been referred to the charity’s support hub for financial and welfare rights advice can be offered inperson appointments with the specialist debt advisors for help with managing debt and rent arrears, insolvency issues, and preventing bailiff action.
The service was set up by the charity to help relieve the stress and anxiety linked to financial fears experienced by patients with long-term health conditions.
Andrew Hansard, the charity’s welfare rights supervisor, said: “Patients with long-term health conditions and their families can be particularly vulnerable to financial crisis.
“Thanks to our collaboration with Rooted Finance, we’ve been able to expand our person-centred support and patients now have swift access to dedicated debt advisors.”
Rooted Finance is a London-based money and debt advice charity that aims to create positive change for those struggling with problem debt.
▼ Welfare rights supervisor, Andrew Hansardhe charity’s support hub exists to help patients with long -term conditions and their families to access services and advice. This includes advocating for those at risk of homelessness, advising on welfare rights and benefits issues and connecting patients with peer support groups.
Between April and August 2023
147 people were supported by the service.
Support hub advisors helped patients to access a combined total of £364k worth of welfare payments they were entitled to, including backdated payments.
Eight patients were supported out of homelessness or had the risk of homelessness averted.
Patient satisfaction survey
92.9% of respondents were satisfied or very satisfied with the help they got.
Just under 80% of respondents said they felt less stressed and their mental or emotional wellbeing had improved since using the service.
What patients say:
“Your help has been invaluable and it’s brilliant you exist within a hospital because benefits and the NHS are both inextricably linked when it comes to patient outcomes of recovery.”
“The support hub should become the standard model used by the NHS nationwide - by helping take stress away for me, I am sure my recovery has been assisted; this takes pressure off the trust as a whole,”
What Royal Free London staff say:
“It is much appreciated to be able to signpost patients to the support hub and to focus on what I can actually help patients with when I am with them.”
“It has hugely benefited me and my patients, saved time and been reassuring.”
“A fantastic resource with friendly helpful staff that is essential to support our patients and provide holistic care.”
lo Blackett knew the Royal Free Hospital well as the place where many family members were treated. Following a chance meeting with the Royal Free Charity’s volunteer manager, Flo now provides an invaluable service to patients. Many of them, and hospital staff, recognise her after a photo featuring her won a national award.
Flo’s career started in hairdressing salon, where she worked her way up from assistant to manager. In 2021, she took a break from her job and got involved in volunteering, supporting a food bank with her mum and at a Marie Curie shop.
After meeting the charity’s volunteer manager, Gill, they recognised the potential for Flo provide comfort to patients beyond medical treatment. Since then, she has worked as a freelance hairdresser funded by the charity.
Flo said: “Sometimes my day will start with requests from staff to see particular patients, or I have some regular patients that I will come back to see every week or two.
“For example, there is one patient who is completely immobile, and I come to give him a shave every two weeks. It isn’t just about the shave of course; I have interactions with patients which I love.”
Adapting her approach to each patient’s needs, she provides haircuts, shampoos and
manicures. She has also visited patients in the intensive care unit.
“There are new challenges working in the hospital environment, but it is very rewarding. I do a lot of detangling, as patient’s hair can often become matted. I remember detangling a patient’s hair for four hours, and once I was finished, she cried with happiness that someone had taken the time to do that for her.
“I sometimes bring music with me and one patient who loved ‘Les Miserables’ asked me to play the album. She sang the whole thing to me while I cut her hair. Her daughters were so thankful afterwards to see their mum happy and being herself again.”
▲ Flo Blackett provides hair care and grooming services to patients ▲ Volunteer Flo Blackett posing with the award winning photo, see page 11ntitled ‘Paul and Flo’, the picture capturing the caring interaction between Flo and patient Paul Lederman was chosen as the winning entry in the ‘Our NHS at 75’ photo competition to celebrate the NHS’s 75th anniversary.
Flo attended the NHS 75 service at Westminster Abbey, where the photo was displayed. She said:
I’m really proud that the photo was chosen. I didn’t realise quite how big an honour it was until I saw it in the exhibition with the other photos from all over the country, and having the opportunity to go the service at Westminster Abbey was great. I am now getting used to being recognised around the hospital, so that is nice and means people know what I do here.
▼ The winning photo featuring patient Paul Lederman during a haircut and beard trim with Flowo-year-old Alice is one of the Royal Free Charity’s youngest therapy dogs.
A chihuahua-Jack Russell mix, she started visiting patients and staff this summer.
Alice is one of three therapy dogs whose owners work for the Royal Free London as well as volunteering with the charity.
Owner Megan, a social worker from New Zealand, is based at the Royal Free Hospital, making sure patients have the support they need to leave hospital safely .
When she’s not arranging care packages or placements for patients, Megan volunteers in her spare time, visiting wards with Alice.
Megan said: “Alice is quite reserved so I think she’s well suited to being a therapy dog. She interacts with the patients and she seems to have an innate ability to sense their needs and she responds accordingly.”
▲ Volunteer Megan with the latest recruit to the therapy dog team at the Royal Free Charity