Events Archives - Pouch support charity

Ileo-Anal Pouch Surgery – A Guide for Patients

Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients

Republished 11 April 2022

Stop Press – Zarah Perry-Woodford will be participating in the Moderated Q&A session on Pouch Care at the Red Lion Group Internal Pouch Information day at Central Middlesex Hospital on Saturday, 14th May 2022.

In 2016, St Mark’s Hospital Academic Institute proudly announced its first ever book publication “Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients”, written by Zarah Perry-Woodford, lead nurse – pouch and stoma care, St Mark’s Hospital.

Zarah has worked at St Mark’s hospital since 2002 and as the lead pouch nurse and practitioner since 2005 providing expert care to patients with ileo-anal pouches.

The book is an invaluable resource for people living with or considering an internal (Ileo-anal) pouch or J-Pouch. You can find out more about the book and how to purchase by clicking on the image below.

The Red Lion Pouch Support Group is delighted to announce that Zarah will be participating in the Moderated Q&A session on pouch care at its Internal Pouch Information Day to be hosted at Central Middlesex Hospital on Saturday, 14th May 2022.

You can find out more about the Information Day and reserve your place by clicking here.

Information Day 2022 (postponed)

Updated 10 May 2022

I am sorry to write to you with news that we have taken the difficult decision to postpone the Red Lion Group Information Day, which was to have taken place on Saturday 14 May at Central Middlesex Hospital.

Unfortunately, we did not have enough registered attendees to support the event. If you are one of the people that had pre-registered for the event, you will have received separate notification and options regarding your donation.

We are all disappointed, but this does offer the opportunity to rearrange the event to later in the year and at a more accessible venue when more people can attend.

We will be looking to rearrange the event later in the year and possibly also to run some of the presentations as on-line webinars in the meantime. We will let you know as soon as we have an alternative date and venue.

The Red Lion Groups first in-person information day since 2019 will be held on Saturday 14th May 2022 at Central Middlesex Hospital (CMH).

Our annual Information Day has always been considered one of the highlights of the Red Lion Group year, but sadly due to COVID, we have not held one since 2019. Now, with restrictions easing, we are delighted to confirm that we will be holding an in person event this year.

Don’t miss this opportunity for a face-to-face meeting with experts in the field of Pouch Surgery and care, as well as meeting Red Lion Group committee members and other pouchees and prospective pouchees.

The past 2 years, RLG have been very fortunate to have had an excellent series of talks from the professionals at St.Mark’s conducted over Zoom. All of these are available on the website.

Following feedback from previous face-to-face meetings, we are increasing the amount of time available for informal group discussion and Q&A time with the experts. This year, the Information Day will follow a slightly altered format with longer sessions from the professionals allowing for more depth to the session and more time for Q&A. The pouch nurses are also doing an hour long workshop for pouchees which will be followed by our usual workshops when any issues raised can be discussed further.

Location

Avery Jones Lecture theatre at Central Middlesex Hospital

Food & Beverage

Tea and Coffee will be provided, but it is proposed that attendees bring their own lunch. This is to take into account that many attendees have particular dietary requirements and also a precaution in the light of COVID.

For your information, there is a cafe and a WHSmiths located at the main entrance to CMH that sells a selection of drinks and sandwiches.

Cost

Members recommended £5.00 donation to cover costs.
Non-members and Guests recommended £10.00 donation to cover costs.

Registration

Click register button below to register and donate. Places are limited so register soon to guarantee your place.

POSTPONED

You will receive email confirmation of your donation and registration.

Agenda

As usual, we will have some of the leading names in the field of J-Pouch creation and maintenance speaking on relevant subjects as well as time for open discussion and socialising.

See below for current draft agenda (Updated 25 March 2022)

Time	Description
10:00am-10:30am	Registration & Coffee
10:30am-10:40am	David Davies – Chairman Red Lion Group Welcome & Introduction
10:40am-11:25am	Valerio Celentano – head of the J-pouch one-stop clinic at Chelsea & Westminster Hospital. Latest surgical techniques in j pouch creation and pouch dysfunction.
11:30am-12:15pm	Dr. Sonya Freason – Consultant Clinical Psychologist – St. Mark’s Hospital – Psychology and the Gut – Mindfulness
12:15pm-12:30pm	Annual General Meeting of Red Lion Group (AGM)
12:30pm-1:30pm	LUNCH
1:30pm-2:30pm	Pouch Nurse Team – St. Mark’s Hospital Moderated Q&A session on Pouch Care
2:30pm-2:45pm	COFFEE BREAK
2:45pm-3:45pm	Male & Female Breakout groups
3:45pm-4:00pm	Summary & Close

Getting there

Central Middlesex Hospital is located in Acton.

Central Middlesex Hospital
Acton Lane
Park Royal
London NW10 7NS

For further information see Getting there

Ultra Low Emission Zone (ULEZ): ULEZ was introduced from 25 October 2021. Sterling Way is part of the North Circular Road and is outside of the ULEZ. All exits facing central London, including Bull Lane for North Middlesex University Hospital, are inside the zone. Find out more on the Transport for London website.

Parking

Parking is available at Central Middlesex Hospital. See Parking

We hope to be providing Car Park passes for our Info Day attendees. Further information to be provided.

Download Poster

You can download a printable version of the Information Day poster by clicking on the Download Now button below.

If you are a medic or a pouch nurse for example, you may wish to display this in your department to advertise the event to your patients.

Information Day 2022 Poster

Download Now!

London Bridges Walk 2022

Roll up! Roll up! for the Main Event

Now the sun is shining, clocks going forward this weekend and just a little over 3 months until the walk, it’s time to dust off your walking shows, start your training and register your intention to take part in this fun event.

Stop Press! Griffin Institute will be offering a prize of a £75.00 Waitrose/ John Lewis gift voucher to a lucky winner who signs up before the end of the Easter holidays – Tuesday 19 April. (Winner to be drawn from a hat, to include people that have already registered).

Red Lion Group is joining one of the fundraising events of the year – the London Bridges Walk!

The event – on Sunday, 26 June 2022 – is over 13 miles – or if you prefer 6.5 miles – and covers 10 of London’s iconic Thames bridges from Putney Bridge to Tower Bridge.

Everyone is welcome to take part – families, children and pets – and if London is too far out of your way we are also running a virtual event which you can complete wherever you are based.

The walk is being organised by the Griffin Institute – a charity linked to St Mark’s Hospital – and the money raised will help fund Red Lion Groups services and St. Mark’s Hospital research projects.

You can REGISTER at the London Bridges walk homepage HERE and download the event e-flyer below.

Look forward to seeing you there!

London Bridges Walk 2022

Download Now!

J Pouch Forum update

J Pouch Forum Update

The first RLG pouch forum of the year took place on Monday 7^th February and what a welcome return!

Some 30 or so pouchees dialled in from the comfort of their own homes to chat informally about pouch-related stuff, to share experiences and suggest solutions and to realise that we are all part of a special community. Brilliantly chaired by softly spoken Chris Browne, who gently lights the blue touch paper and then sits back and lets us chatter away, whilst ensuring that everyone gets the chance to speak and be heard. The audience was mixed, with new and old pouchees, regular attendees and newcomers. But, as always, the warmth and sense of community was as strong as ever.

Topics covered in a thoroughly riveting 98 minutes included nutrition, overnight frequency and seepage, use and availability of catheters, vitamin B12 and D deficiency, the challenge of educating GPs about pouches, pelvic floor exercises, peristalsis, full emptying, absorbent pads, loperamide, local pouchee meetings and many other topics. Gary Bronziet was pressing all the right buttons once again, despite being in hospital recovering from pouch-related surgery (adhesiolysis). And RLG Trustee Theresa Parr was on hand to add reassuring and learned comments, as ever.

The time flew; Chris drew the evening to a close at 9.08pm but one felt it could have gone on for an hour longer. A terrific evening for anyone with pouch-related questions or concerns, or those just wanting to be reminded they are part of this special pouch community. As one newcomer commented “we all look pretty normal!”

The next RLG forum will take place on Monday 7^th March and thereafter typically on the first Monday of every month. Please register in advance at https://pouchsupport.org/events/ to get your log in details and to keep track of other upcoming events.

David Davies

RLG Chairman

Stoma and Pouch Care – Virtual information day

Join the St. Mark’s Hospital Stoma & Pouch Nurses for a Virtual information day on Thursday 25th November 2021 (09:00-15:00)

This virtual event was held on ZOOM and featured a number of guest speakers on a variety of Pouch and Stoma related subjects and provided the opportunity to put questions directly to the nursing team.

Recordings of the Sessions are now available. See Below.

RECORDING DETAILS

Date: Thursday, 25th November 2021
Title: Stoma & Pouch Care Information day
Time: 09:00-15:00 (London time)

To view recordings of the sessions click HERE

Information Day Agenda

See below to download a printable copy of the agenda.

For further information about St. Mark’s Hospital Stoma & Pouch Care services go to https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/

Download the Information Day Poster and Agenda below

Stoma & Pouch Care Information Day Poster

Download Now!

Information Day Agenda

Download Now!

The London Bridges Walk 2022

We are delighted to have been invited by the Griffin Instiutute to participate in their annual London Bridges Walk fund-raising event. Save the Date – 26th June 2022. For further information and how to register, see below.

To pre-register and guarantee your place, please send a brief email to the Griffin Institute Fundraising Events Manager, Ian Tate – i.tate@griffininstitute.org.uk.

“Zoom into summer 2021” – Summary of guest speakers

Red Lion Group Zoom into Summer series of Pouch webcasts 2021

(Updated 21 December 2021)

Following out 2020 highly successful Zoom into Summer Series, we are delighted to announce that we will be repeating it this year. Red Lion Group will be hosting a series of Pouch related webcasts (using the ZOOM facility), with guest speakers talking on a variety of subjects that will be of interest to our community.

Attendance is FREE and is open to Red Lion Group members and non-members alike.

As you may know, we have previously hosted an annual in-person Information Day at St. Mark’s hospital, but due to COVID, for the time being we not able to hold an in-person event. However, our Zoom into Summer series will be a chance to catch up with some of the speakers you would have heard from at the Info day and meet online with other Pouchees!

Keep an eye out for updates, including additional speakers and dates and times.

We had the pleasure of listening to the following speakers in 2021. We look forward to running a similar series next year. Join us in 2022!

Janindra Warusavitarne, Consultant Colorectal Surgeon at St. Mark’s Hospital.

Subject: Through the keyhole – latest developments in pouch surgery
Recorded: Wednesday, 5 May 2021. 07:30 pm (London time)

Prof. R. J. Nicholls, Emeritus Consultant Surgeon to St Mark’s Hospital, London and Visiting Professor at Imperial College, London

Subject: Evolution of Modern Surgery
Recorded: Wednesday, 19 May at 7.30 pm (London time).

Uchu Meade, Head of Pharmacy at St. Mark’s Hospital.

Subject: Keep taking the tablets: a guide to the best drugs and when to take them.
Recorded: Wednesday, 26 May at 7.30 pm (London time).

Professor Ailsa Hart, Consultant Gastroenterologist, Sub-Dean (St Mark’s Academic Institute)

Subject: Professor Hart will be speaking on the subject “Managing a pouch behaving badly”

Recorded: Monday 14, June 2021 at 07:30 PM (London time)

Jason Bacon, CEO of St. Mark’s Hospital Foundation

Subject: St Mark’s Hospital’s clinical services at Northwick Park, Central Middlesex Hospital and Beyond

Recorded: Monday, 28 June 2021 at 7.30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Gabriela Poufou, Dietician St. Mark’s Hospital

Subject: Healthy eating for Patients with an Internal Pouch

Recorded: Wednesday 4 August 2021 at 7:30 pm (London Time)

To Register for events go to https://pouchsupport.org/events

Petya Marinova, Pouch nurse specialist, St. Mark’s Hospital

Subject: St Mark’s Hospital: Life after the Pandemic

Recorded: Wednesday 22 September 2021 at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org /events

Ellie Bradshaw, formerly gastrointestinal specialist nurse at St Mark’s Hospital, now at London’s Queen Charlotte Hospital.

Subject: Crouch for your pouch – key emptying tips

Recorded: Wednesday 13th October at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

Phil Tozer (Consultant Colorectal Surgeon, St. Mark’s hospital) and Lillian Reza (St. Mark’s academic institute).

Subject: Fistulas associated with pouches.

Recorded: Wednesday 8th December at 7:30 pm (London time)

To Register for events go to https://pouchsupport.org/events

For a review of last years Zoom into Summer series webcasts , click HERE.

Ellie Bradshaw – “Crouch for your Pouch” recording available

Membership Secretary Blog

Greetings all and hope this finds you well. Going forward I will be posting regular news updates in the form of a BLOG. I hope you find this useful! If you have any questions about contents herein, please email me at membership@pouchsupport.org

Best Wishes

Gary Bronziet

RLG Membership Secretary

Published 19 October 2021

Ellie Bradshaw – “Crouch for your Pouch – key emptying tips” recording available”

Last week’s webcast by Ellie Bradshaw, formerly gastrointestinal specialist nurse and biofeedback specialist at St Mark’s Hospital, now at Princess Grace, on the subject “Crouch for your Pouch – key emptying tips” is now available on the Red Lion Group’s YouTube channel.

This was a fascinating and helpful webcast, followed by an interesting Q&A session. If you missed out, or wish to view it again, you can see it here.

Ellie Bradshaw – “Crouch for your pouch” – key emptying tips

Registration is also open for our next Open Forum on Monday, 1st November.

To view recordings and/or register for events go to our Events page pouchsupport.org/events.

Published 24 September 2021

Petya Marinova Recording available

For those that missed it, and for those that want to see it again, a quick note to let you know that the recording of the webcast by Petya Marinova, Pouch Nurse Specialist at St. Mark’s hospital, is now available for viewing.

Registration is also open for our next Open Forum on 4th October and the next webcast on 13th October by Ellie Bradshaw titled “Crouch for your Pouch – key emptying tips“

To view recordings and/or register for events go to our Events page pouchsupport.org/events.

Published 10 August 2021

“Can’t wait” / Medic Alert card

By now, registered (paid up members) should have received the latest (Summer 2021) edition of our ROAR! magazine which contains our widely anticipated “Can’t Wait”/Medic alert card!

Hope you have received yours and will find it useful. You may have noticed that the “Medic Alert” side includes a QR code, which is a short cut to the medic alert information on our website.

Take a look as it contains a wealth of useful information for pouchees and medics.

How to use a QR code

Many of you will have become familiar with QR codes (if you weren’t already!) due to COVID and the requirement to check-in at many locations.

Depending on your smart phone, you may be able to access the web page by simply opening the camera on your phone and pointing at the image. Give it a try. You can try it here if you don’t have the card yet.

If that doesn’t work, then you may need to download a FREE QR code reader from the App store or Google Play. Search in the App store for QR Code or QR Reader or similar and you will find many free apps!

Failing that, you can always access the same information by going to pouchsupport.org/medic

Gabriela Pouchou recording and slides now available.

Last week’s webcast by Gabriela Pouchou, Dietician St. Mark’s Hospital, on the subject “Healthy eating for Patients with an Internal Pouch” is now available on the Red Lion Group’s YouTube channel.

This was a fascinating and helpful webcast, followed by an interesting Q&A session. If you missed out, or wish to view it again, you can see it here.

Gabriela has also kindly shared her PowerPoint slides with us, which you can find on the resources section of our website. see pouchsupport.org/resources

“Save the date” Annual General Meeting (AGM)

The 2021 Annual General Meeting (AGM) of the Red Lion Group will take place on Zoom, on Monday 6th September at 7:00 pm. Formal notification will be sent out soon.

We expect this to be a short meeting and will be followed at 7:30 pm by the regular monthly open forum.

Please Register your attendance at pouchsupport.org/events to attend the AGM and/or the Forum.

Kangaroo club information day on 16 October 2021

A reminder of a terrific event coming up in the post-covid pouch world – the Kangaroo Club is holding a real live face-to-face Information Day in Oxford on Saturday 16 October (with internet link for those who wish to watch online).

The event is open to non-members and is FREE (but they will be asking for a contribution to cover lunch).

Pre-registration is necessary by sending email to info@kangarooclub.org.uk

The draft agenda and full details can be downloaded by clicking below.

download agenda

St. Mark’s hospital clinical services at Northwick Park, Central…

The latest in the Red Lion Group Zoom into Summer webcasts continued last night (June 28th 2021) with an excellent presentation by Jason Bacon, CEO of the St Mark’s Foundation. The St Mark’s Foundation is a non-NHS charity linked to St Mark’s Hospital and who raise money to support fundamental research and clinical work being conducted at this centre of excellence for bowel surgery. The Foundation raises approximately £2m every year for this tremendous cause and Jason has regular meetings with the clinic staff to understand their needs and how the funding should best be directed. The Foundation also delivers a huge amount of training resource to the St Mark’s Academy.

Jason spoke about the disruptions caused by COVID, with surgery being stopped at St Mark’s as Northwick Park was transformed into a front-line covid hospital, including the St. Mark’s Frederick Salmon ward. The pouch nurses and other specialist staff were relocated to Central Middlesex Hospital and with the reality that only very urgent outpatient cases could be seen.

The staff remain at Central Middlesex Hospital and this might be a permanent move but no one is sure about this at the moment. The restrictions are more relaxed so the pouch nurses have been able to expand access to their levels of support for pouchees, and potential pouchees.

Jason was full of praise for the multi-disciplinary specialist skills which are integrated and available to provide thorough care to pouchees before, during and after their surgical journey and this is recognised by the fact that 60% of St Mark’s patients are tertiary referrals (in other words they are patients who are referred from other hospitals).

Central Middlesex Hospital is a modern facility with excellent parking for those travelling by car and an excellent local bus service with a sub-depot located right outside the hospital.

Every cloud has a silver lining and Jason spoke warmly about the skills developed as a result of adapting to the new challenges of covid, in particular the conduct of outpatient consultations over the internet via zoom calls. Zarah Perry-Woodford will be speaking on this topic in more detail during her RLG Zoom lecture in September (date to be announced).

Jason was also able to offer informal comment and advice on the availability of medina catheters after the current supplier withdraws the product. RLG will be following up on this on behalf of our members.

The next in the series of Summer lectures takes place on 7 July with Ellie Bradshaw talking about the importance of full emptying on pouch health and function. Until recently, Ellie was a specialist nurse in the Biofeedback Unit at St Mark’s, so she has a huge amount of knowledge and expertise and is an engaging and entertaining speaker.

You can see a full recording of the Jason Bacon webcast and register for upcoming events at https://pouchsupport.org/events

David Davies
(RLG Chairman)

Ileo-Anal Pouch Surgery – A Guide for Patients

Ileo-Anal Pouch Surgery for Ulcerative Colitis – A Guide for Patients

Information Day 2022 (postponed)

Information Day 2022 (postponed)

Location

Food & Beverage

Cost

Registration

Agenda

Getting there

Parking

Download Poster

London Bridges Walk 2022

Roll up! Roll up! for the Main Event

J Pouch Forum update

J Pouch Forum Update

Stoma and Pouch Care – Virtual information day

The London Bridges Walk 2022

The London Bridges Walk 2022

“Zoom into summer 2021” – Summary of guest speakers

Ellie Bradshaw – “Crouch for your Pouch” recording available

Membership Secretary Blog

Published 19 October 2021

Ellie Bradshaw – “Crouch for your Pouch – key emptying tips” recording available”

Published 24 September 2021

Petya Marinova Recording available

Published 10 August 2021

“Can’t wait” / Medic Alert card

How to use a QR code

Gabriela Pouchou recording and slides now available.

“Save the date” Annual General Meeting (AGM)

Kangaroo club information day on 16 October 2021

St. Mark’s hospital clinical services at Northwick Park, Central…

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The Red Lion Group is a UK registered charity number 1068124