8 The lives of women across the country and north central London continue to improve one year on from the introduction of a new fibroid treatment at CFH. The RFL was the first of four centres in London to begin offering Sonata, known as sonography-assisted transcervical fibroid ablation. The treatment alleviates symptoms of fibroids by using radiofrequency energy in the uterus. It is minimally invasive and sees women across the UK travel to CFH, even from as far as 200 miles. Clinical studies have shown that it is effective, with 96% of women saying their symptoms improved within a year. Consultant obstetrician and gynaecologist Mahantesh Karoshi carried out the first procedure in March last year. Dr Karoshi said: “The Sonata treatment changes the lives of women who are troubled by fibroids. If patients meet the criteria, it is the least invasive treatment option for them to become symptom-free. Before, some women would need major surgery, whereas now, we can treat patients while talking to them and they can go home the same day.” Giving everybody the same access to healthcare is central to improving the lives of the populations we serve. Early and equitable diagnosis within the RFL’s pathology services is one way we are doing that for patients, no matter where they live. This service involves a dedicated team of approximately 60 clinical and non-clinical staff who aim for quick turnaround times for tests and results. Around 80-90% of urgent samples and 70% of routine samples are processed within five working days – a critical metric in cancer pathways. Within the service, each hospital within the group, including partner North Mid, maintains its own specimen reception area where samples are processed before being transferred to the main laboratory. Here, the bulk of the processing occurs, and then glass slides are returned to the clinical team for reporting. “A significant advancement in the field of cellular pathology this year is the adoption and implementation of ‘digital pathology’,” said Dr Dhili Arul, clinical director for Delivering world-class care for patients with rare disorders Stephanie Schandorf Gogo is the latest patient to undergo the procedure. She said: “I was having heavy and painful periods from my fibroids, but I didn’t want to put myself through surgery. I wasn’t sure if I would be able to have the treatment at first but luckily, Dr Karoshi told me he could treat some of my fibroids using Sonata. The procedure went really well.” pathology. “That is set to replace microscopes as the main way to examine samples, which should enhance efficiency and accuracy in diagnosis.” In clinical biochemistry, the team includes consultants, junior doctors, and clinical fellows, who oversee laboratory operations and provide clinical interpretation services for clinicians and local GPs. The RFL consultant team have also been part of developing an internationally recognised service for managing complex lipid disorders. They run extended clinics such as the HIV lipid clinic, joint paediatric lipid clinic, and joint fatty liver/lipid clinic. “The team is also involved in conducting clinical trials related to the treatment of lipid disorders to advance medical knowledge,” Dr Arul added. The combined efforts ensure all patients receive timely and accurate diagnostic assessments, which leads to earlier treatment and better outcomes. Changing the lives of women with fibroids Prevention and early diagnosis for our populations Obstetrics and gynaecology team at CFH Ava Jones is one of the patients using the rare diseases service at the RFH. The 22-year-old has been coming to the hospital for the past four years, having been diagnosed with Niemann-Pick disease type C (NP-C) aged 16. People with the condition are unable to process large molecules within their cells, meaning fats accumulate around the brain, liver and spleen. It’s a progressive disease and symptoms include difficulties with mobility and dementia. NP-C is caused by a rare gene mutation – neither Ava’s mother Debbie nor father Steve knew they were carriers for the gene until Ava’s diagnosis. Debbie said: “Ava was initially diagnosed with hydrocephalus, which is a build up of fluid in the brain, and was treated for that. However, the symptoms continued after the treatment, and eventually she was diagnosed with NP-C. “We wanted to be part of a clinical trial – it was why we decided to come to the Royal Free Hospital. It means coming here every six months for some tests, but we wanted to give Ava the best chance and to help expand the knowledge of this disease which has no cure. “We are so proud to have Ava as our daughter,” Debbie said. “Despite everything that she has to deal with on a daily basis, she keeps smiling through and her smiles and laughter are infectious.” Rare diseases Centre of excellence in elective surgery Early equitable diagnosis 9 Ava Jones with her parents Debbie and Steve Improving the lives of people with rare disorders through innovative treatment and research is a key part of the RFH ambitions. These disorders include amyloidosis, systemic autoinflammatory syndrome, haemophilia, immunology, lysosomal storage disorders, scleroderma and pulmonary hypertension. When patients are referred from across the country to the rare disorders service, investigations are carried out on the same day, and many of the patients are keen to participate in clinical trials in order to push knowledge forward and help find improved treatment options. Pratima Chowdary, clinical service lead for rare diseases, said the aim is to bring together support services that will enable them to deliver better patient care, increase research opportunities and create efficiencies. “We want to bring together academic and clinical research to provide the best patient care using the latest diagnostics,” she said. “We also have logistical and operational support, like accommodation for patients who have to travel to come here, pharmacy and IT. It also means comprehensive care, supporting both the physical and psychological health of our patients. “The set up will be similar for each service so if we can coordinate and pull together, that will benefit all of us.” The rare disorders service is pulling together a strategy, setting out how this approach would work in practice – and part of this is providing a new IT system that will cater to the needs of the rare disorders services. It is hoped that the new system will be available in the coming two years.
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