Following registration and coffee, Martin Green from PolyPeople opened the proceedings with an introduction and welcome, especially to the large number of participants who were attending the information day for the first time.
The first speaker was Vicky Cuthill, Lead Nurse/Manager of the Polyposis Registry, on “The Role of the Polyposis Registry”. The Polyposis Registry (PR) is the oldest PR in the world having started in 1924. She showed a list of the current team, headed by Professor Sue Clark.
The overall aims of the PR are cancer prevention and education for patients, families and clinicians. It facilitates counselling, collects data for evidence based care and coordinates appointments. This means St Mark’s has become a world centre of excellence through experience, providing early diagnosis and appropriate care resulting in a much reduced likelihood of cancer.
We were shown an example of a patient record, where all details of investigations, treatment, follow up appointments etc. are meticulously recorded. Vicky also ran through the valuable role of administrators, nurse practitioners and nurse specialists.
Jackie Hawkins, Children’s Nurse Practitioner, then talked about her role working closely with Dr Warren Hyer, Paediatric Gastroenterologist. One of her tasks is assessing the suitability of children for transition colonoscopy. This is a new service, started four years ago and still developing, which gradually transitions young people into adult clinics. She also runs transition clinics with Warren Hyer and Sue Clark as young people transition into adult care.
(For further details on the above visit http://www.stmarkshospital.nhs.uk/services-a-z/polyposis-registry/, and also see write ups of previous information days).
Vicky ended by mentioning the new website www.polyposis.org.uk, currently in its infancy, and invited people to let the PR know what they want to see on the website. She also encouraged people to sign up to the PR twitter feed.
Ellie Bradshaw, Clinical Nurse Specialist in Biofeedback Therapy, then gave a very informative talk on a subject close to many people’s hearts; “Diet and Bowel Management with Polyposis”. She reminded everyone that the primary function of the large bowel is fluid absorption, and in its absence it is possible to become dehydrated even if you drink lots of water. The St Mark’s electrolyte mix can counteract the effects of dehydration. Regular use of Dioralyte is not recommended as it contains too much potassium.
She outlined various types of diet, including low fibre, which gives the gut less to do and is recommended for IBS, people with surgical adhesions, and after surgery, when higher fibre food can be re-introduced incrementally. Exclusion diets for food intolerances include lactose free, gluten free and FODMAP. Use of the latter should be supervised by a dietician.
Bowel stimulants include nicotine, caffeine, alcohol, spicy food and artificial sweeteners e.g. Sorbitol, mannitol. Medication can be used to slow the gut, including loperamide, Fybogel, colesevalam and codeine. Some people find it helpful to take loperamide twenty minutes before eating. Fybogel can also be usefully combined with loperamide and taken last thing at night.
Ellie then discussed urge incontinence and passive incontinence. She showed a diagram for the correct position to sit on the loo, with the feet raised so they are higher than the bottom. She discussed the use of anal plugs for passive incontinence, then said that the body can be taught to use other muscles following surgery, in order to reduce incontinence. There then followed some audience participation, during which we were told to imagine we were sitting on a £1 coin that we had to pick up using our vaginal (in women) and anal muscles. This resulted in much mirth, not to mention red faces and popping eyes!
In conclusion she said that there are many ways of managing incontinence, including sacral nerve stimulation as well as the methods outlined above, and nobody should be too embarrassed to seek help.
After coffee break, Dr Andy Latchford, Consultant Gastroenterologist, gave a talk “All About Endoscopy”. He stressed the importance of good bowel preparation, comparing it to scuba diving either in dirty water or the Maldives. Two slides showed a 1 cm polyp that was invisible in a badly prepped bowel but visible in the well prepped one. He also showed us how the introduction of a blue dye showed up polyps which were otherwise invisible in people with serrated polyposis.
He then discussed sedation, and said that inadequate sedation worried people more than anything. He stressed that the procedure should always be comfortable and not scary, and that it is important to get things right first time so that no one goes away with any bad memories. He outlined the various methods of sedation and the factors to be taken into account when making a choice.
He finished by explaining that the whole of the NHS was suffering from lack of capacity. The PR tries to mitigate the effects of this by monitoring due dates and reviewing previous findings to determine the importance of keeping strictly to those dates. Unacceptable waits are flagged up to senior management. He also explained why it may be impossible, for reasons of sedation required or expertise available on a given day, for patients to have two procedures on the same day. Hence it may be necessary for them to attend two separate appointments.
The morning session was brought to a close by Peter Grainger, the chairman of PolyPeople, which is the patient support group for people with any of the polyposis syndromes. It was set up nine years ago at the request of Sue Clark, to ensure that nobody with polyposis need feel scared or alone. As well as fundraising to support the PR, it is intending to set up a ‘buddy system’ in the near future, to enable members with the same syndrome, or living in the same area, to contact each other. To this end, the website is undergoing a major upgrade at present, so please be patient!
After lunch, Vicky hosted ‘Question Time’, in which Sue Clark, Andy Latchford and Warren Hyer answered questions that had been submitted on paper during the course of the day. This event has proved very popular in recent years and covered a range of topics. Some of the information given in answer to various questions included the following:-
- Familial Adenomatous Polyposis (FAP), Peutz Jeghers Syndrome (PJS) and Juvenile Polyposis (JP) can’t skip a generation, MYH Associated Polyposis (MAP) can.
- In PJS and JP removal of polyps is effective. In FAP there may be hundreds of polyps so removal is unfeasible. The bowel lining is abnormal and polyps will regrow anyway, hence a colectomy is necessary.
- The PR follow the principle of carrying out genetic testing in children before the earliest age of onset but when they are old enough to really understand the test and the implications. This is generally between the ages of 12 and 14. There is good evidence that life need not blighted by diagnosis before this age.
- No food or medicine can avoid or reduce polyps. They are a useful pre-cancer indicator.
- For bowel and stomach cancer surgery is still the most effective option.
- JP and PJS are very rarely seen in other centres so referral to St Mark’s is preferable. There is agreement amongst juvenile specialists that juvenile endoscopies should always be carried out at St Mark’s.
- There are other centres that have expertise in FAP and MAP.
- There is increasing awareness of serrated polyposis so it can be handled at other centres.
- Ongoing checks can usually be handled locally, depending on where you live and the stage of the disease.
- Attenuated FAP is a term used for patients with a genetic diagnosis of FAP but with less than 100 polyps.
- MAP has fewer polyps but occurs in a different gene. Hence it is not the same as attenuated FAP.
- The term Gardner’s syndrome is obsolete and unhelpful and should therefore no longer be used.
Participants were then able to attend two workshops from a choice of four:-
- Polyposis transition clinics/surgery for teenagers run by Warren Hyer/Mr Faiz/Jackie Hawkins;
- Current research projects “The influence of environmental factors on gastrointestinal neoplasia in adenomatous polyposis”presented by Isabel Martin and clinically based independent patient assessmentpresented by Chuks Anele;
- Pre-implantation genetic diagnosis run by Cheryl Berlin, Lead Cancer Genetic Counsellor (see write up for 2015 for more information on this);
- Polypartners/PolyPeople run by Martin Green/PolyPeople.
Vicky and Martin then brought another very interesting and informative meeting to a close.
Authors: Sue Hall and Steph Green