Minutes of UKPCG meeting
Nov 19th 2015
Royal College of Surgeons of England
Chair: Stewart Cleeve
Secretary: Richard England
Attendees (29)
Tim Bradnock
Karen Chun (USA)
Daniel Colliver
Joe Curry
Richard England
Bala Eradi
Oliver Gee
Abigail Jones
Simon Kenny
Alireza Keshtgar
Dorothy Kufeji
Anna-May Long
Georgina Malakounides
Majella McCullagh
Irene Miliken
Sandeep Motiwale
Eric Nicholls
Yatin Patel
Clare Skerritt
Nicola Smith
Ian Sugarman
Emmanuel Towu
Stewart Cleeve
Alun Williams
Kirsty Brennan
Anthony Owen
Simon Blackburn
Ed Hannon
Ashish Minocha
Apologies:
Govind Murthi
Richard Lindley
Shazia Sharif
Jonathan Sutcliffe
Amulya Saxena
Michael Stanton
The chair welcomed the attendees and summarised the programme for the day
The secretary talked through the following administrative issues:
1) Next meeting. A decision on where to hold the next meeting is yet to be confirmed as there is a Colorectal course proposed for Leeds in June (22nd-24th). The course may be aimed at trainees but may be suitable for consultants as well. Marc Levitt and Ivo de Blauu are likely to be faculty alongside Ian and Jonathan as local organisers.
Whether we should combine our meeting with the course / hold our meeting alongside the course or hold our meeting completely separate to the course are the options and opinion will be sought from the group when more details are available.
2) Contents of the BAPS Colorectal group website was demonstrated. We would like to upload documents / resources and guidelines of common interest to our site under a ‘resources’ tab, e.g. VACTERL screening proforma. Submissions should be sent to the secretary for approval and any uploaded will carry a disclaimer as BAPS cannot be held responsible for content accuracy.
3) Suggestions for website links to add to the present links were requested.
4) The discussions on group email have been very useful, however a more formal solution is still being sought and we are going to investigate / trial a solution called DISQUS with Shan the new administrator for BAPS working with Kate in the office.
5) Kenya: Update on the link that may be formed with a stoma support group in Kenya. An email requesting more specific information on the patient group and local resources was sent but did not generate the information required to carry this forward at the present time. It is hoped that given time a workable solution can be found to help this group of patients and develop an exciting international role for the group.
6) Suggestion to consider registration of Hirschsprungs and Anorectal Malformation using a central database held by UKPCG. Dendrite like system might be worth considering.
Clinical Programme
1) Dorothy Kufeji and Stewart Cleeve
Chronic Intestinal Pseudo-obstruction (CIP)
DK presented 2 cases with evidence of neuropathic and myopathic CIP. One also with bladder involvement. The comprehensive investigations including manometric studies were described.
Ideas for moving forward with the case were proposed including refeeding into the colon.
DK also gave a short presentation on the general topic of CIP and emphasized the MDT management and specialist referral pathways required. It was acknowledged that extensive surgical involvement usually occurs early on before the diagnosis is recognised. There is also a gastroenterology working group looking at how these cases are managed.
SC presented a case of CIP where pain was significant issue and there were considerable psychological concerns.
Psychological factors can be:
a) The cause of disease
b) Caused by the disease
c) Caused by the extensive investigation and hospitalisation
The case highlighted the importance of techniques such as allowing home leave, physio, pain management rather than just increasing analgesia and psychological input.
The safeguarding element was also discussed extensively within the group and in some cases this turns out to be the principle concern.
2) Abigail Jones - NICE transition fellow
An outline of the development of the guidelines for Transition Pathways was described.
Publication date Feb 2016 but draft guideline on website now:
https://www.nice.org.uk/guidance/indevelopment/gid-scwave0714/documents
33% of adolescents needing transition to adult services would have colorectal disorders – the biggest group of our patients. IBD is usually managed via paediatric gastroenterology pathways.
General scheme would be Ready Steady Go as promoted by Southampton team (See minutes from May 2015).
Paediatric Clinic Preparation
Joint Clinics
Adult Clinics
Important suggestions were maintaining a database of transitioning patients. Developing close working relationship with link clinicians. Named worker – usually a specialist nurse to act as link for young adult to be a point of contact. Liaison with health services, social workers and educational.
Urological Transition examples:
Dan Wood - Adolescent urology Clinic at UCH
Alun Williams - Urology / Renal Transplant in Nottingham
Fiona McAndrew Alder Hey Urology transition clinics
Gynaecology and Obstetric transition:
Should we offer support to obstetricians dealing with the ‘Precarious perineum’ and complex abdomen (e.g. ACE and Mitrofanoff)
Adult Congenital Cardiac Surgery Specialists - example of good practice.
? Need for Adult Congenital Gastrointestinal Specialist
? Need for specialist involved in the transition of the neurologically impaired child.
Other issues mentioned
Need for handheld patient records.
3) Anna-May Long BAPS CASS ARM study
Run through of the current ARM study which started in Oct and will finish next Sept.
Will monitor 1 month and 1 year outcomes although submission to look at longer term outcomes may be in pipeline.
Long discussion over wording of question on ‘Anterior Ectopic Anus’
Advised to simplify it to ‘Anterior Anus.’
Requested members to ensure forms are returned in timely fashion. Colorectal group members should oversee the completion of these forms even if carried out by a junior member of staff to ensure accuracy.
Also please ask all colleagues to report cases of possible anorectal malformation picked up in clinic but not neonatal case. Whether follow up long term needed or not.
Anna-May also asked for involvement in a parent experiences study run by her colleague Lisa Hinton. They need parents of neonates with surgical conditions to interview. for more info.
4) Andrew Brown (TENS Care)
A rep from the company that produce the Flexistim TENS machine that will be used in the Interferential therapy for STC study. He demonstrated the settings and application of the machine.
It was advised to obtain best results that the patient increases the stimulation until the sensation is just uncomfortable then reduce it slightly. However it was noted that in a blinded study this sensation would have to be dealt with by allowing boxes that give a short lived sensation on switching on.
It was asked whether tea and coffee could impair the response to the stimulation and this was felt to be possible and should be considered further.
A reduced price for the boxes would be available if a bulk purchase was made.
5) Clare Skerritt
On behalf of Matt Lee an adult colorectal surgeon - Clare circulated a questionnaire on the management of perianal crohns disease. A guideline committee will be meeting in March.
6) Joe Curry
Presentation of 3 cases of ARM where patient has had to revert to stoma following multiple complications with recurrent perianal sepsis or stricturing. Opinons were sought on whether to attempt further reconstruction or wait or indeed leave a permanent stoma.
7) Stewart Cleeve / Kirsty Brennan
Hirschsprungs case long segment with ileo-anal Duhamel who developed high out put covering stoma then still had problems after closure. Multiple admissions where good nursing care seems to resolve situation. Again safeguarding concerns raised and suggested as way forward.
8) Richard England
Survey monkey questionnaire for friendly midwives constructed to ascertain the general policy for examining the anus of the newborn in maternity units. This will be circulated shortly.
Examples of interaction with adult colleagues requested as I will be talking to ACPGBI next year at their Congress about the interface between paediatric and adult colorectal surgery.
Comments from the Secretary.
Despite a few competing meetings on this occasion, the turnout was very encouraging and enabled excellent discussions. Unfortunately safeguarding was a recurring theme but also the need to improve transition services and have a long term view of the care of our patients.
Thank you to everyone who attended
Richard England
Secretary UKPCG