A picture of research

A whole team of people carry out research in Great Ormond Street Hospital. To thank them all on this International Clinical Trials Day, we’re sharing a picture drawn by one of the patients being seen.

Matilda loves art.

“I used to have an amazing art therapist,” she said. “We used to do art together when I came in to visit.

“One day we put a big piece of paper down and we squirted paint out of syringes on to it.”

Matilda is also on a clinical trial at Great Ormond Street Hospital (GOSH).

“Sometimes I feel a bit worried coming into hospital, but sometimes I feel a bit safe and happy.”

Matilda’s mum, Georgina, explained just how much of a commitment being involved in a clinical trial is, “it’s intense coming to London every two weeks for the trial and it took Matilda a very long time to get used to her new routine. One minute she was fine, the next she was diagnosed with a crazy-rare disease, suddenly she was coming to hospital pretty frequently.”

“The nurses are amazing. They have done everything they can to make it an easier experience for Matilda. They’re really understanding, they listen to her and try to accommodate any little changes she needs to make, like having her cannula done by a familiar nurse in the CRF instead of in theatre. And now, eighteen months into her drug trial Matilda’s a pro! I think she must be one of the best in the hospital at getting her cannulas in. She is just legendary.”

Matilda is so impressed with her team, that she drew them. The likenesses are amazing, and the whole team are smiling and happy to see her.

Clinical trials help us find new treatments and cures for complex childhood conditions, and involve a huge number of people, both clinical and non-clinical. Matilda’s included everyone she’s met while receiving treatment in the National Institute for Health Research Clinical Research Facility (CRF) at GOSH.

Chris Jackson was one of the lucky team members to have his portrait captured. As a Senior Research Coordinator in the CRF, he helps to set up and run clinical trials and supports the clinical teams with admin, so that they can focus on the patient.

“I’ve seen the picture,” he said. “And I really like it! It’s captured my likeness really well.

“That picture brought it all home that you’ve got all these different people working together to ensure that she gets the treatment.”

Dr Mari-Liis Uudelepp is a Clinical Fellow in the Metabolic Medicine team and looks after young people, such as Matilda, who are taking part in clinical trials.

“Children come from all over the place to participate in clinical trials,” she explained. “I need to make sure that they are well enough to have treatment. I need to examine them from head-to-toe, while keeping in mind what is needed for the clinical trial protocol.”

For Dr Uudelepp, Matilda’s picture represents how important it is that children in hospital feel comfortable.

“We must work as hard as we can to make the experience comfortable for our patients who come every two weeks, or even every week. It takes a lot of their time and changes their life arrangements. So a consistent team is important.”

It’s the nurses who the patients see perhaps most of the time, and at the CRF, there is a dedicated team of Research Nurses looking after the patients and families taking part in clinical trials.

“We're just like their nurses up on the ward,” explained Waffa Girshab, a Senior Research Nurse in the facility. “But the kids we see are on a research study, so they get the same care they'd get up there on the wards, with us.

“We make sure that we work together with a whole group of hospital staff, including the ward nurses, the clinical trials pharmacists, physios and dietitians. The Clinical Nurse Specialists help us out with identifying potential patients to get involved.”

Primarily, the research nurses work with their patients, making small changes to suit the likes and dislikes of the young people they see, while keeping in line with the study protocol.

Stephanie Tingley was a Research Nurse for Matilda and her family when they started their research journey. It’s important that patients and their families understand what they are volunteering for, so Stephanie met the family to introduce them to the trial.

She said, “It's really nice that you're quite often there for a patient's visit – you build a nice relationship with the child and the family. You know what their likes and dislikes are and you know how to make things work for the research trial and also for the patient.

“We worked with anaesthetists to make sure that Matilda could have a drink as close to going to theatre as possible. We organised the time she could come in so she's not waiting around for anyone. We've even managed to time her meds before she goes home, so she doesn’t feel sick in the car.”

This consistent, joined up care has had a positive effect on Matilda, and she smiled as she listed the names of all the people she’s met in the NIHR Clinical Research Facility at GOSH.

“I drew Helen, who’s a nice nurse. I drew Christopher. I drew Steph. I drew Professor Gissen.

“I drew Waffa… And Phil the Physio, and Emma and… I just like them all.”

To mark International Clinical Trials Day GOSH is part  of the ‘I Am Research’ campaign – a UK-wide initiative led by the National Institute for Health Research (NIHR) that aims to raise awareness of research amongst NHS staff and patients.