Saturday 16th March 2013 saw a further CICRA family day, this time in Birmingham, where young IBD patients and their families came together to hear about the latest developments in the world of childhood IBD and to exchange experiences.
Overall, the day was a huge success with over 140 family attendees, great clinical input and a superb venue at the Novotel City Centre.
One of the biggest benefits of these occasions is that parents and young people can meet others who are facing similar challenges, and this event was no exception. There was a real buzz about the venue as families met and swapped stories.
The event was chaired by Dr Sue Protheroe, Consultant Paediatric Gastroenterologist at Birmingham Childrens Hospital and Dr Nick Croft, CICRA Medical Director, who kicked off the meeting with a warm welcome to all who had braved the weather to attend. The day was structured around talks in the morning and discussion groups after lunch.
Dr Anna Pigott, Consultant Paediatric Gastroenterologist at University Hospital at North Staffordshire, set the ball rolling with a talk on the importance of early diagnosis and a team care approach to IBD. “Early diagnosis is so important because it enables quicker and less complex treatment, and crucially there may be less impact on a child’s growth” explained Dr Pigott. Time to diagnose childhood IBD has fallen dramatically since the 1970’s, when it could take up to 3 years! At North Staffs the average time from GP visit to consultant appointment is 12 days, as local GP awareness is good and the hospital is set up to ‘fast track’ new patients. However, nationwide there remain issues with mis-diagnosis and mis-referrals. At CICRA we still hear of young people mis-diagnosed with irritable bowel or anorexia, or referred to adult units which may lack the specialist knowledge to treat children. Finally, early diagnosis is very important in the case of flare ups. This is where the whole gastro team, such as the specialist nurse and dietician, play a key role: patients are encouraged to contact their unit at the first sign of a flare up so that it can be treated before it becomes too serious.
Next up, Ranjit Sandhu, a Gastroenterology Specialist Nurse gave an insightful description of the role of an IBD nurse. The specialist nurse is a vital part of any gastroenterology team with a broad range of responsibilities. Paramount amongst these is to ensure that the patient has the best experience possible, which includes co-ordinating the care they receive, educating them about their condition and acting as advisor, counsellor and confidante. Often the IBD nurse will be the main point of contact for a patient, particularly when they are at home. The nurse will also run specific clinics focussed on the softer, less medical aspects of IBD such as lifestyle, relationships and careers. Other key tasks include liaising with schools and helping manage the transition of young people in to adult care when the time is right, which can vary from person to person.
As ever, one of the highlights of the morning was the young people’s and parents’ perspectives on living with IBD. Chloe Bayliss showed an inspiring video montage that she had made, of the ups and downs of her journey through diagnosis and treatment of Crohn’s Disease, while her Mum Susie talked about the worries of a parent. Vikram Maan gave a very clear, mature description of his experiences with Ulcerative Colitis, and his Mum described some of the alternative therapies they had investigated in their desperation to find a cure. The ‘rollercoaster’ experiences they described would be familiar to many families at the event. Everyone in the room was inspired not just by their courage but by their positive attitude moving forward.
Janette Vyse, Lead for Patient Experience & Participation, and Dr Rafeeq Muhammed, Consultant Paediatric Gastroenterologist, both from Birmingham Children’s Hospital then took the floor to describe the ongoing efforts underway at BCH to improve the experience of young IBD patients. There are a number of national policy drives to improve the patient experience, not just in terms of physical treatment but also the emotional experience. At BCH, this means keeping patients informed, occupied, and recognising some of the less obvious causes of anxiety; such as admission to hospital, conversations with other patients (in the absence of medical staff), car parking for parents and keeping relatives informed. Other exercises include an NHS Change Day, new ‘Dignity Giving Suits’ to replace traditional hospital robes, and a patient feedback app.
Dr Muhammed then talked through the work of the Parent Patient Panel at BCH, which is a quarterly meeting at BCH involving patients, parents, family members, school teachers and ward nurses. The aim is partly to provide education and awareness, partly to gain feedback to improve services, and partly to allow patients, families and staff to interact and share experiences away from the day to day wards and clinics. It is co-ordinated via a facebook group, and has led to several improvements to service being made, and has received good feedback from group members.
One aspect of IBD that can cause a lot of anxiety is the possibility of surgery. Mr Ingo Jester, from the Department of Paediatric Surgery at BCH, gave an overview of how children and young people can be helped through surgery. Surgery is historically often seen as a “rescue” treatment to be used after other options, such as enteral feed, steroids and azathiaprine have failed to induce remission. Patients often have fears about pain, complications, lengthy hospital stays and scarring. However, there have been many advances in IBD surgery in recent years which should make it much less of a cause for concern.
For example, a combination of immunosupression and surgical therapies can improve outcome and quality of life, and advances in surgical approach and technology have reduced the associated complications. Around 30 to 40% of patients with Ulcerative Colitis may require surgery, either as a planned or emergency treatment. “Minimally invasive surgery” (laparoscopy) is regularly used, as in the short term there is less pain, less scarring and shorter hospital stays, with no long term difference in outcome compared with open surgery. Up to 70% of Crohn’s Disease sufferers may also require surgery to treat complications such as structures and fistulas. Again, this is increasingly performed laparoscopically, which can lead to earlier return of bowel function, shorter hospital stay, fewer late small bowel obstructions and decreased early complications. “Surgery”, concluded Mr Jester, “is not the end of the world”.
To conclude the presentations, Professor Tom MacDonald, Dean for Research at Barts & the Royal London Hospital gave an update on the latest progress in research, treatment and care. Immune related diseases are a major research focus today, as over the last 50-60 years major infectious diseases like mumps, measles, hepatitis and tuberculosis have dramatically reduced while immune disorder such as Crohn’s Disease, Type 1 Diabetes, Asthma and Multiple Sclerosis have significantly increased. Research can typically focus on gut bacteria, genetics, or immunology and inflammation: which is the major focus at present.
Inflammatory bowel disease is caused by a hyperactive immune response in the gut wall. “In Crohn’s disease we think the immune system is over-reacting to normal gut bacteria, however in Ulcerative Colitis, the cause of the over-reactivity is much less clear” said Prof MacDonald. Treatment for IBD is therefore aimed at dampening the immune response. However, corticosteroids can have harmful side-effects, and azathiaprine can take time to work; both of these are a bit like a ‘blunderbuss’ approach. Immunologists have discovered a lot of molecules involved in the highly complex inflammation response. “Anti-TNFα antibodies have revolutionised IBD treatment” explained Prof MacDonald. Biological / anti-cytokine therapies such as Infliximab induce remission in 50% of patients.
However, there are still challenges ahead. For instance, revolutionary though Infliximab is, there are still 50% of patients who do not respond to it. And for those patients who do respond, this responsiveness can wane over time. There is therefore continuing interest in drugs which may be better than anti-TNF’s, and that can be used on patients that either do not respond to anti-TNF’s or have lost their responsiveness. Trials are also underway on Tofacitinib, a pill which may treat Ulcerative Colitis. Patients should take heart that thousands of researchers around the world are working on IBD. In short, concluded Prof MacDonald, “restoring the gut to its original healthy pre-IBD state is doable”.
After an excellent buffet lunch, which gave attendees the opportunity to meet each other and visit some of the stalls, the meeting was divided up into interactive discussion groups, each hosted by clinical experts. Families had the chance to visit three groups over the course of the afternoon, from the following:
- Living & Coping with IBD
- Clinical & Treatment
- Diet & Nutrition
- Surgery & Stoma Care
The younger children were kept happy with a children’s entertainer while the teenagers had a discussion group of their own with Dr Nick Croft and CICRA’s young person representatives, Louise & Jordon.
The day was rounded off with a short plenary session, where trustee Neil Gooding and Vice-Chairman Rod Mitchell gave a brief insight into the work of CICRA. ]
Dr Sue Protheroe closed the meeting.
CICRA would like to sincerely thank Dr Protheroe and Dr Croft for chairing this event; the clinical staff who gave up their Saturday to support this event, the volunteers who helped organise it; and above all the patients and families whose active participation made the day such a success.