The goals of the parents' network are to share information and to provide support to families from the initial stages of finding out that your child has a gastro condition to learning how to live with it.
The first Inflammatory Bowel Disease information open day took place at Great Ormond Street Hospital (GOSH) on Saturday 1 June 2013.
About the open day
This day was an open invite to children who have inflammatory bowel diseases (IBD), age 11 and above, and their family members. The aim of the day was to give children and young adults an opportunity to learn about their condition, to take part in their disease management and for the team to raise awareness of the specialist services available within GOSH. It was also an opportunity for families to interact with the Multidisciplinary Gastroenterology team in an informal environment.
Approximately 45 people attended the day. Although the day was intended for GOSH patients and families, we welcomed around 20 per cent non-GOSH patients who came along for the opportunity to learn and share experiences.
The day started off with an educational morning and talks covered a variety of topics in IBD from genetics, diet and medical management, to the health care transition.The afternoon session was filled with inspirational speakers, a lead parent representative and three talks from charities.
A massive thank you goes out to our inspirational speakers Ryan Acton and Faizal Pathan. Together they did a fantastic job sharing their IBD Journeys and inspiring the young adults. Ryan, who is now in his late 30s, was diagnosed at the age of 14. Despite the rocky road, he has managed to follow his dreams of travelling, flying and having a family. Faizal is a third year medical student had practical tips to share with the patients and their families on living, studying and pursing a career while going through diagnosis and investigations into Crohn's disease.
Ana Daruwalla is the current lead parent for GOSH Improve Care Now (ICN) and did a presentation on her experiences of being an ICN parent representative, giving an overview of ICN from a parent’s perspective. She opened up discussions about setting up a parent panel and support group. A total of nine parents pledged their support to constructing and running the Parent Advocacy/Support Group. We are now in the process of setting up a parent panel meeting and if any other IBD parents are interested in setting this up please email Ana.
Another subject that generated a lot of interest is Patients Knows Best (PKB), a patient communication portal which the GOSH IBD team has signed up to. The whole Gastroenterology department has been working on ways to improve communication between medical staff and patients and between GOSH and other health care providers. The patients who attended the day had an opportunity to hear first hand from the PKB team about how this works and also had the option to sign up to PKB on the day. Our IBD PKB portal at GOSH will officially be running from 1 August 2013. More information on this will be given in our clinics and can also be found on the PKB website.
Given the positive response, there is agreement amongst the IBD team at GOSH, along with our patients and families, that this Information Open Day should be a regular feature on the calendar.
For information on the next event, planned for Autumn 2013, please visit the APG website which will be updated in due course.
Brief summary of the talks
Transition from paediatric to adult care is an area recognised country wide as requiring more input and improving. As a team, we have prioritised improving our transition pathway because we transition around 40 IBD patients a year. Dr Kiparissi gave an informative talk on what transition is and the work currently being undertaken. She also covered some practical tips on preparing for transition.
The families that attended the open day highlighted how important they thought transition is and how useful the talk on the subject was for them. In her presentation, Dr Kiparissi called upon adolescents to participate in upcoming project groups - the dates of which will soon be announced. The pathway hopes to ensure a structured individualised transition into the adult services.
The presentation on “Medical advances in IBD” by Dr Lindley generated a lot of interest and the patients found it useful to find out more about the treatment options currently available and new treatments being developed that have a potential to help them in the future.
"He was great, he made me know I can ask for help at school with my work and prepare for my SATs & SPAG Tests. Awesome." - Comment on Faizal’s presentation
"Gave me a broad understanding of what my daughter has, medications best suited and hope that there is research towards her condition is comforting.“ - Mother of a 12 year old
"I did not know I could still pursue my dream career because I have crohns." - 13 year old boy
"Area I had not thought about but very valuable. Glad I am aware now." - Mother of a 13 year old commenting on the transition presentation
“Very good to have another person’s story! You can live with the illness-life continues.” - 12 year old
A final thank you to MSD for sponsoring the refreshments enjoyed on the day and to the Charities Crohns and Colitis UK, CICRA and Over The Wall Foundation. We would also like to thank former IBD CNS Victoria Evans and all the speakers for giving up their time to run the day.