Hospital library service resumes

After Pandemic

A mobile library service for staff and patients at the Royal Free Hospital has restarted following an interruption due to COVID-19. The volunteer-led service was paused to prevent the spread of infection but now it’s back to business as usual distributing books, periodicals and magazines.

The mobile library is part of the charity’s work to enhance the wellbeing of staff and patients. It caters to a variety of interests, ages and reading levels.

The service is run by volunteers including Peter and Colin.

Peter became a volunteer for the Royal Free Charity following his retirement from the civil service. As well as delivering the hospital mobile library, he volunteers at Keats Community Library in Hampstead.

Peter said: “It’s great to be back. Patients are very enthusiastic about the book trolley, and they often really enjoy having a chat. Our books are available to staff as well.”

Colin retired as a district nurse five years ago and chose to volunteer at the charity to make a difference to the NHS. He said: “I find it most rewarding, talking with patients and offering them a choice of books to read; some patients might want to read a novel or a short story while others might choose a biography, educational material or just a good old Metro to do the crossword puzzle.” he Royal Free Charity is giving £65,000 to research investigating why diabetic foot ulcers are slow to heal, leaving patients at risk of foot or leg amputation.

Alan Bennett and PG Wodehouse are particularly popular writers and requests for non-fiction books usually focus on the second world war and particularly the London blitz.

The benefits of reading books extend beyond reading a good story. Regularly reading helps keeps the brain healthy because it enhances cognitive function. For people who are used to bedtime reading at home, it can trigger the body’s sleep mechanisms which can be disrupted by a stay in hospital.

◄ When they’re not delivering books to staff and patients, Peter and Colin are avid readers themselves.

Peter is a fan of Jonathan Coe and Tom Stoppard.

Colin’s favourite author is JP Donleavy.

Diabetic foot ulceration is a growing problem – it’s predicted that more than one in 10 people worldwide will be affected by diabetes by 2045. One in five patients with diabetes currently has the ulcers.

Researchers at the Royal Free Hospital hope to create new treatments by identifying key changes in the immune and inflammatory cells in patients with these ulcers. Janice Tsui, consultant vascular surgeon, said: lisa Menozzi is a PhD student investigating whether the gut microbiome has a role in Parkinson’s disease, thanks to a charity grant of £83,000.

This funding allows us to bring together leading scientists, experienced clinicians, patients and their families to focus on finding new treatments for these patients. We are very grateful to our patients and staff who have donated time and money to the Royal Free Charity in support of this work.

The wounds often take months to heal, if they ever do, and patients have a higher risk of other complications, as well as reduced life expectancy.

The Royal Free Hospital’s multidisciplinary foot service is a leading national service providing care to patients with diabetic foot complications in north central London and beyond.

The gut microbiome is a collection of bacteria, viruses, fungi and other microorganisms crucial to digestion and helping the body to absorb nutrients. But their benefits are now thought to go far beyond the digestive system and have been linked to brain function and mental health.

Alterations in the gut bacteria have also been associated with a wide range of diseases, including neurological disorders.

Elisa is investigating how changes in the gut microbiome might contribute to the development of Parkinson's disease in people with a genetic predisposition to the condition. She found that certain components of gut bacteria can promote the accumulation of alpha-synuclein, a protein found in abnormal levels in patients with Parkinson's disease. This abnormal protein could migrate to the brain and ultimately cause symptoms of Parkinson's disease. esearch using human tissue donated by patients helps scientists to learn more about diseases and can speed up the discovery of cures and treatments.

She has also conducted a project involving people with Parkinson's disease and healthy individuals who have donated saliva and stool samples. Elisa is going to compare the oral and gut microbiomes of these individuals to see whether there are differences linked to the disease.

Elisa’s research findings could bring us closer to new treatments for Parkinson’s disease and have helped the trust to secure £7.1m in funding, for a bigger study, from the Aligning Science Across Parkinson’s initiative and the Michael J. Fox Foundation for Parkinson’s Research.

A grant of £152,000 from the Royal Free Charity led to the creation of Tissue Access for Patient Benefit (TAPB). TAPB helped Royal Free Hospital patients with chronic liver disease and liver cancer to donate samples to research. The samples were removed as part of routine operations and would otherwise have been disposed of.

The project, which was match funded by UCLH biomedical research centre, set out to address the fact that while there were systems in place to analyse human biological samples donated by patients, matching patients to research studies and then collecting the samples was often a challenge. he Royal Free Charity’s biggest undertaking is a £60 million project to deliver the Pears Building, home to the UCL Institute of Immunity and Transplantation (IIT), one of the few research centres in the world dedicated to the human immune system. Researchers at the IIT investigate and aim to develop better treatments and potential cures for diseases and conditions like cancer, diabetes, HIV and tuberculosis.

Since the grant was awarded, 3,547 samples have been donated to this biobank. This has contributed to a wealth of research findings, including 55 published research papers and two clinical trials. The creation of the biobank has also created more research funding opportunities for the Royal Free London and UCL.

The IIT carries out translational research This means that the research teams take information discovered in the laboratory and use it to work with clinical colleagues – doctors, nurses and other healthcare professionals – to find new therapies for patients.

Thanks to its location on the Royal Free Hospital (RFH) campus, research and patient care can work side by side, speeding up the pathway from laboratory bench to bedside – and back again as clinicians feed back information about how patients respond to their new treatment.

Early-stage human trials

Charity seed funding led to the opening of a new research centre at the Royal Free Hospital where the discoveries made in the IIT are put to the test.

The NIHR Royal Free Clinical Research Facility (CRF) is where patients take part in testing often vital treatments for the first time. It’s also where early-stage safety and efficacy trials take place.

Judy Dewinter, chair of the Royal Free Charity and a patient at the RFH, said:

We were delighted to supply the seed funding to help establish the clinical research facility. As a long-term patient myself with an incurable blood cancer, I know how reliant I am on new and effective treatments on the occasions when I relapse. I’m so grateful for the patients who have come before me who have taken part in research. I wouldn’t be here today if it wasn’t for them.

Many of the people who chose to take part in trials are existing RFH patients. Since the CRF opened its doors last year, hundreds of patients have already been involved in world-leading research, including in the development of two COVID-19 vaccines.

The proximity of the IIT, CRF and the hospital means:

• scientists have greater access to patient samples. Testing research theories in patient cells helps to ensure that laboratory work goes in the right direction to improve care for patients.

• patients can be at the forefront of research design, further improving the relevance of scientific insights to patient care.

• patients have greater access to clinical trials and new treatments.

Wall-to-wall science

Some of the artwork for a 70-foot hoarding that surrounded the Pears Building construction site has been re-purposed for the corridors of the patient accommodation on the fifth and sixth floors.

There are three panels, each describing different aspects of the work of the researchers in the UCL Institute of Immunity and Transplantation (IIT), reproduced on both floors.

Panel one talks about the work to “turn up” the immune system so that the body more easily recognises threats like infection and cancer. Panel two focuses on the work to “turn down” the body’s response where it has led to it attacking its own cells in autoimmune conditions like type 1 diabetes and arthritis. And panel three talks about work to treat inherited immune disorders.

Professor Hans Stauss, director of the IIT, said: “There is a direct link between the patient accommodation and the research carried out at the institute in the Pears Building. Some patients give blood samples so that researchers can study the immune cells, and some patients take part in clinical trials to develop better therapies. The involvement of patients in our research is a critical aspect of the work at the institute.” n 2021, Kay Graham’s leg was amputated as part of life-saving treatment for an abdominal aortic aneurysm. Now she volunteers at the Royal Free Hospital helping new amputees to navigate life once they leave the wards.

Kay’s amputation was unexpected. She was on a Zoom call with her local theatre group when they noticed that she had slipped out of her chair. They acted fast, calling an ambulance and her neighbour to help.

Kay was treated at the Royal Free Hospital and had a six-hour operation on her aorta. The swift action from her friends saved her life but a lack of blood supply to her leg meant it needed to be amputated.

Kay’s recovery meant accessing lots of different services in different parts of London, which showed her how complex the system can be. She said: “In the NHS there are lots of very good people, but sometimes a lack of joined-up thinking and that is where I feel I can help.

“Doctors understand your clinical needs, and nurses can talk to you about wound recovery, and physiotherapists will help you get your movement back, but each of them don’t really know about what stage is next in the system, what happens next, how do you cope once you are home?”

Kay accessed the Royal Free Charity support hub’s amputee support group while in hospital. The group meets online fortnightly for patients who are still on the hospital’s wards, those further into recovery, and the support hub's own welfare advisors.

Kay attends the group to offer advice to amputees who are just starting to navigate life after amputation: “I want to reassure people that an amputation is not the end of normal life. With help, and a fair amount of stubbornness, one can get all sorts of help. I try to explain what happens when you leave the hospital, how you get your prosthetic and how to access help from the local authority.”

As well as attending a support group, Kay visits the wards on a regular basis: “If you aren’t physically on the ward, it is easy to miss people and we want to be able to point them towards the support group, or anything else they might need.”

Karlene Campbell-Fearon, ward sister, is grateful for the perspective that Kay’s experience can bring: ast September, the Royal Free Charity launched its supported volunteer programme, creating opportunities for young people with additional support needs to volunteer in hospitals.

Since then, seven young people have joined the programme and contributed an amazing 400 hours of volunteering time.

The charity works with the applicants to identify what support measures can be put in place for them and young volunteers who start the programme are paired with experienced volunteers.

Atong has been a supported volunteer since November, helping to deliver the Royal Free Hospital’s shop trolley service, selling snacks and newspapers to patients.

“I’ve learnt how to be confident, bold, respectful and polite. My communication has really improved. In the future, I’d like to work in a shop or restaurant, so volunteering is helping me develop my customer service skills by speaking to lots of different members of the public.”

Atong faces some challenges when handling money and using the scanner; volunteering alongside a partner means that she can always ask for help and learn along the way.

Tilly has been volunteering on the wards at the Royal Free Hospital offering teas, coffees, and a chat to patients. She volunteers with Stuart who has been volunteering for over six years.

Tilly said: “I love it. I’ve made friends with Stuart as well as people on the wards. It really does have benefit for young people to get out into the real world and see what it would be like to have a paying job.

“Plus, it’s just nice to help. My role is often something simple like sitting down for five minutes with someone to have a cup of tea and a chat, or even just a smile and that can change someone’s day. It’s kindness, that’s what it is. Showing compassion costs nothing.”

Marathon challenge for data analyst

As a research data and performance analyst at the Royal Free Hospital, Nick Allison has seen first hand the impact of the charity’s support. Nick is now also focusing on his own sporting performance, training for the London Marathon this April in aid of the charity.

Nick said: “The charity has provided a lot of support, from grants for our team to attend conferences, which in turn have helped us to work smarter and increase income to the department, all the way up to the huge support for the Pears Building.

“I've benefitted both directly and indirectly from the charity’s support and I would like to give a little back. Living in Greenwich, I have the start line and the Cutty Sark right on my doorstep. There’s a real buzz every year, and I can’t wait to be part of it. And it also means I won’t be late!” ast December, at the age of just 66, Tony Johnson, ex-rugby league player and retired police sergeant died. Six years earlier, he had started his retirement from the police force, where he hadn't taken a single day off sick, when he was diagnosed with hereditary cardiac amyloidosis.

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 no cure.

Following his diagnosis, Tony was offered the chance to take part in a research trial at the Royal Free Hospital, home of the National Amyloidosis Centre. The study looked at whether a particular medicine could slow down the build-up of the protein that accumulates in the heart in patients with cardiac amyloidosis.

Julian Gilmore, professor of medicine at the centre, said: “Cardiac amyloidosis is a progressive and fatal disease. The development of new treatments, currently available only via clinical trials, have substantially improved the quality of life and outcomes for patients who take part in them. We’re so grateful to all our patients, like Tony, who take part in trials and help us pave the way for a future in which these treatments are routinely available in the NHS.”

Tony’s wife Susan and children Mark, Matthew and Laura have launched a fundraising appeal in a bid to raise awareness of amyloidosis and to raise money in support of further research into the condition.

Laura said: “He was really brave to go on the trial, not knowing whether it would help him. He became a police officer because he wanted to help people. So really this is a way for his legacy to be continuing to help people, through the fundraising and the awareness of the symptoms.

“It is important to help keep the research going. He had a hereditary form of amyloidosis which made us realise this could be any one of us.”

Tony was a veteran of the infamous 1981 Battle of Fartown between Huddersfield and Wigan, a bad-tempered game in which six players were sent off while Tony’s resilience and skill saw him hailed as man of the match.

Tony served the Rugby Football League as an investigator and mediator for more than a decade and following his retirement he played a leading role in the Huddersfield Former Players’ Association.

The Royal Free Charity is the only charity in the UK directly supporting the work and research of the National Amyloidosis Centre. The charity funds early-stage research, helping to ensure new diagnoses and treatment discoveries go from laboratory to clinic as quickly and safely as possible.

To find out more about the family’s fundraising appeal, visit the dedicated page at www.justgiving.com/fundraising/tony-tj-johnson.

Chair appointed to new research panel

A leading UK breast cancer specialist has joined the Royal Free Charity to chair its new research review panel.

Professor Adrian Harris recently retired from clinical practice. He had been a consultant medical oncologist at the Oxford University Hospitals NHS Trust and leader of a research group working on hypoxia and metabolism. He remains committed to continuing his research activities and as chair of the charity’s research review panel, Prof Harris will lead the panel on the review and recommendation of research applications. He will support the delivery of a new research strategy, as well as advising on future funding initiatives.

Prof Harris previously worked at the Royal Free Hospital as a registrar.