After the welcome and introduction by Martin Green from the PolyPeople support group, Kay Neale gave an interesting talk on the history of the Polyposis Registry (PR), which celebrates its 90th birthday this year.
We were told that in 1924 Dr Dukes and Mr Lockhart-Mummery, who worked at the old St Marks in City Road, Islington, started to keep records of people with polyposis. In those pre-NHS days St Marks offered free treatment and the medical staff worked on a voluntary basis. Mr (later Dr) Bussey started to compile family trees of affected families, and St Marks still has contact today with some of these original families.
In the 1980’s, amidst fears that the PR would not survive unless given formal status it was made an official hospital department and took possession of its first computer.
In the 1990’s Robin Phillips became the Director of the PR. Around this time the upkeep of the old hospital became too expensive and alternative sites were considered. One such site was the old gin factory behind St Marks presumably denuded of all traces of gin! Eventually the hospital moved to the current site at Northwick Park in 1995.
Since then the PR has gone from strength to strength. In 2004 Dr Hyer became the first paediatric gastroenterologist in polyposis, As a result of his work the Trust approved funding for the first paediatric nurse practitioner in 2013. In that year Professor Sue Clarke took over as Director. A special mention was given to Jacquie Wright, Sandra Burke and Muditha Samarasinghe, nurses who gave particularly impressive contributions to the work of the Registry.
Kay then summarised the value of the PR since the first research paper Polypoid growths in the rectum by Allingham was published in 1886. By the 1940s the 50:50 inheritance risk had been identified. In 1948 the first removal of the colon with ileorectal anastomosis was performed, and it was heartening to hear that the patient lived until she was in her eighties. Record keeping between 1948-58 gave doctors confidence to offer surgery to patients with FAP prevent cancer and to start a ‘call up’ programme for those at risk.
1970-2000:- First Park’s pouch operation for FAP at St Marks; causative gene for FAP identified using blood samples sent to Imperial Cancer Research Fund; data analysis led to examinations every six months instead of four; new staging system for duodenal polyposis to refine examination intervals; predictive testing introduced for FAP.
2000 – present:- further genetic mutations identified relating to Peutz-Jeghers and Juvenile polyposis syndromes (PJS & JPS); mutations in the MYH gene found to cause Mut Y H Associated Polyposis (MAP), similar to FAP but with recessive pattern of inheritance; and the malignant potential of serrated polyposis syndrome recognised (SPS).
Thanks were expressed to all patients who took part in research and the doctors who were interested in rare conditions.
Dr Inspector then covered some of the Psychological Aspects of Familial Polyposis, and likened losing your colon to losing part of your mind but reminded us that polyposis is something that we have, it is not something that has us. He said his role was often misunderstood, and illustrated this most amusingly by showing a slide of a letter addressed to Dr Inspector, Gut Psychiatrist, St Marks Hospital.
Prof Sue Clark then gave a very interesting and concise outline of the Surgical Journey, starting with various methods of establishing the necessity for surgery, when it would need to take place, and the type of surgery required. The final part of the journey included the possibility of further surgery and other complications such as desmoids. Different problems associated with other forms of polyposis such as JPS and SPS, and PJS were also covered, right through to polymerase proof reading polyposis (PPAP) which was only identified in 2012.
Dr Hyer and Jackie Hawkins then talked about Paediatric Services, pointing out that nowhere else in the UK and, possibly, Europe, had a paediatric polyposis unit. It currently has 128 patients in its care, with a further 81 who have now transferred to adult services. They outlined future plans to develop transition clinics, a sedation service for colonoscopy, paediatric nurse led clinics and outreach clinics amongst others.
The research fellows gave an update on their projects, which were looking at the effects of colectomy on sodium levels and consequently aldosterone levels; the immunology of the gut and the role of commensal bacteria; and desmoid tumours, including their growth rate drivers and looking for a possible ‘desmoid gene’.
The day concluded with various workshops giving patients and their partners an opportunity to discuss their concerns and to share their experiences, which, given the nature of the condition, were often very entertaining! The DIY Endoscopy workshop was popular as always, especially with the younger members of the audience. Ms Ripple Man suggested that they might like to put the pictures on Bottombook!
Last, but not least, we all enjoyed tucking into an enormous 90th birthday cake; so a tasty, informative and supportive day was enjoyed by all.
Next year’s Information Day will be advertised on this website once the date has been confirmed. Don’t miss out on what is probably the best opportunity in the world to meet others with your condition. It is your chance to keep up to date and have your questions answered! We really hope to see you there.