Helping shape research: Sandra’s story
13 Nov 2019, 4:11 p.m.
Meet 17-year-old patient Sandra, voice of our new Sample Bank animation! In this article, Sandra explains the importance of Sample Bank and her involvement with the Young Persons Advisory Group for research (YPAG).Hello! My name is Sandra and I'm a Great Ormond Street Hospital (GOSH) patient under the care of the Neurology team. I'm also a member of the GOSH Young Peoples Forum (YPF) and GOSH Young Persons Advisory Group (YPAG), a group that helps to shape research at GOSH. I provided the voice for the Sample Bank animation and the YPAG also gave their feedback on the concept of a Sample Bank and on the script for the animation, making sure it was suitable for patients and their families.
If you haven't already, watch the short animation below:
The impact of Sample Bank on future patients
As someone diagnosed with a rare condition, I would always encourage patients to provide samples (of course, only if they're happy with providing them). By providing samples, the patients are providing researchers with an opportunity to find the cause for rare illnesses that patients deal with on a daily basis. Like Professor Goldblatt said, “The GOSH Sample Bank will be invaluable for researchers studying rare childhood diseases.” His words certainly echo the truth, especially at a specialist hospital like GOSH.
Sample Bank has the potential to become a rich source of vital information, which could allow researchers to answer questions such as why certain conditions occur, and find possible cures for them. This would help doctors to provide a more accurate diagnosis leading to an improved quality of treatment.
I think it's a thoughtful and selfless way to give back to a hospital that has only helped me so far. It's deeply gratifying knowing that I'm providing something that will positively impact future patients like me. Just knowing that future patients can receive an improved and specialised form of treatment makes what I do so much more worth it. From my experience, at Young Persons Advisory Group for research (YPAG), having interacted with researchers who are interested to understand the aetiology of rare childhood illnesses allows me to appreciate that there are people willing to help me progress through my treatment apart from my doctors and nurses at GOSH.
What is YPAG?
YPAG is part of a growing national network called Generation R, and our group in London is one of the five around the country. We are a diverse group of young people ranging from as little as 9 years old to our older members at 18, although we warmly welcome anyone aged between 8-21 interested in improving health by advising on research.
In my opinion, the GOSH YPAG is really important as it gives young people a platform to express their opinions on research projects that concern patients like them. I firmly believe it empowers young people by giving them a voice thereby helping them feel valued and a part of the hospital community.
Passionate about research
I decided to join YPAG because I felt passionate about research which contributes hugely in so many different ways to treating rare illnesses and finding cures. Having a rare condition where I was told there was no cure, research provided me with a sense of purpose and hope; as well as this, by providing feedback to researchers to help them carry out their research relevant to young people, I felt as if I was contributing in some way to helping improve the experience of young people at GOSH and their health.
YPAG meets six times a year and my first meeting was in November 2017. At our meetings we usually have doctors or researchers come in to talk to us about a project or trial they may be leading whereupon we provide feedback to help them carry out research relevant to children and young people.
One particular project I personally enjoyed was helping to improve an app called "Little Journey" designed to help prepare young patients for surgery. It was founded on research that discovered that over half of patients experience anxiety after surgery. Hence, "Little Journey" was born with the primary purpose of helping patients feel more relaxed and at ease with their situation. Its virtual reality features help patients familiarise themselves with the hospital surroundings and help them to understand what to expect on the day of the surgery. We were asked to help to design new characters - all of which would be taken into consideration by the lead designer - as well as test functions of the app.
Throughout the year, GOSH organises and delivers a range of activities that are open for patients, families and members of the public where you can meet researchers and find out about their work. I attended the NIHR GOSH Biomedical Research Centre Family Fun Day last October and thought it was a fantastic experience that gave me invaluable exposure into the advancements of science and medicine. It was an eye-opening experience to talk with researchers about their work and the range of activities there was to choose from has definitely made me want to come back again this year!
Speak to your doctors and nurses about how you can get involved in the GOSH Sample Bank and YPAG.
Ancient gene mutation found as the cause of rare hereditary condition for GOSH patient.
UK scientists have found that a 7,000-year-old genetic mutation is responsible for a rare form of hereditary motor neuropathy (HMN).
Leukaemia trial shows promise and complexity of genome-edited cell therapies
A ‘one size fits all’ immune therapy developed at the UCL Great Ormond Street Institute of Child Health (ICH) could help to clear cancerous cells in children and adults who have exhausted all other treatment options for B-cell acute lymphoblastic leukaemi
GOSH researchers join experts in warning of the detrimental impact of a no deal Brexit on rare diseases
Experts have warned that a ‘no deal’ Brexit will result in the exclusion of the UK from the 24 European Reference Networks (ERNs) that were established to improve the care of patients bearing the lifelong burden of a rare disease, which require highly spe
Promising early results in CAR T-cell trial for common childhood cancer
Results from a phase I clinical trial Involving the UCL Great Ormond Street Institute of Child Health (ICH) show that CAR T-cell therapy could achieve activity against neuroblastoma tumours, opening the door to progress this approach towards further clini