News Archives - Pouch support charity

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.

Smiley Film Awards – RLG needs your vote!

Smiley Film Awards – RLG needs your vote!

The Red Lion Group is very proud to announce that our recent film “J-Pouch Surgery – Recovery time, risks, and benefits,” featuring Mr Toby Hammond, has been nominated in the Smiley Film Awards.

The 5th Charity Film Awards is the world’s largest campaign for cause-based films and, the Smiley Movement is a platform for people driving positive change.

To make the final we need the public vote! Voting is easy simply visit https://smileymovement.org/single-award/286

This link takes you straight to our film and then all you need to do is click vote.

This is a fantastic platform to raise awareness of our condition and, the more votes we receive, the more chance we have of making the finals!

Together we can raise awareness and help support others living with a Pouch. So please help spread the word – share the link on your social media – tell all your friends and family and most importantly please vote!

To find out more about the Smiley Awards click HERE.

The COVID crisis has accelerated our movement to modern…

The COVID crisis has accelerated our movement to modern virtual technology.

One of the casualties of the COVID crisis has been our annual information day normally hosted at St. Mark’s Hospital which previously had been the highlight of the Red Lion Group calendar. In 2020, when it became obvious that an in-person event would not be possible, it occurred to me that this would be a perfect opportunity to utilise the Zoom technology to replace the information day with a series of “Virtual events” – and hence our Zoom into Summer Series was launched for the summer of 2020. In fact, this technology was not that new. I had been using equivalent platforms such as WebEx and GoToMeeting for many years in my professional capacity – but suddenly this virtual meeting technology had become mainstream, and “zooming” and dare I say, “You’re on MUTE!” also became part of our everyday vocabulary!

In fact, using this virtual platform made the logistics of hosting this event much simpler. No longer did we have to try to coordinate the availability of the potential speakers around one particular Saturday. Separate events could be scheduled at the convenience of each speaker. The Ladies and Gentleman’s “workshops” that previously ended the day at the Information Day were replaced with regular monthly Open Zoom Forums. However, one of the biggest advantages of the “Virtual format” has been the accessibility of the events irrespective of geographic location. We have virtual attendees from all around the UK including Wales, Scotland and Ireland, from Europe (Notably France and Portugal) and we also have some regular attendees from the USA, East and West Coast.

Although it is our intention to host an in-person Information Day at the earliest opportunity (hopefully in 2022) it is also intended that we will continue with our virtual events for the foreseeable future.

The Red Lion Group Website has been significantly improved together with a new easy to remember URL

You have probably noticed that our website was significantly re-vamped a couple of years ago. Thanks to D&AC who put together the new framework. This has been a major leap forward for us and raised our profile tremendously. The new site at pouchsupport.org is at the very top of the Google search results when people are searching for pouch support related information. The available resources are continually expanding making our site the “go to” place for pouch related information and the number of visitors continues to increase – not just from the UK but from around the globe.

Another step was to link our website with the most active Facebook discussion group J-Pouch Support (UK Specific). This group has over 1,000 members and is very active on a daily basis. Visitors can read the activity on this group directly from the FORUM section of our website. See https://pouchsupport.org/forum . (As it is a closed group, to contribute to the group – you need to submit a join request on Facebook).

The membership process has been streamlined and our membership continues to grow

As part of the modernisation, we have also streamlined the membership application process. Visitors can now submit a membership application directly from the website. (See pouchsupport.org/join). We have also registered with a charitable payment portal called CAF (Charity Aid Foundation) which simplifies the fee payment and donation process.

We recently also introduced a unqiue “Can’t Wait” membership card – the only such card designed specifically for pouchees. One side is a traditional “Can’t Wait to use a Loo” message in various languages, and the reverse side is a Medic Alert which has an explanation of our condition together with a URL and a QR code that links directly to a more detailed medic alert page on our website (see pouchsupport.org/medic )

Our membership numbers are on the rise, and it is likely that this is very much related to a combination of the steps we have taken as outlined above – specifically the website, the zoom meetings, and the membership card. As a result, in 2021 to date, we added 88 new members!

Whereas the Red Lion Group was originally founded as a St. Mark’s centric support group, you can see from the picture below the geographic spread of our current membership.

We appreciate your continued support and remind you that the Red Lion Group is run entirely by volunteers. Membership fees cover our expenses (which are minimal) and surplus funds are donated to the St. Mark’s Hospital Foundation. We recently made a donation of £5,000 to the Foundation. (See https://pouchsupport.org/rlg-donates-5000-for-pouch-related-research/).

Best wishes & Seasons Greetings from

Gary Bronziet
Membership Secretary and IT
membership@pouchsupport.org

Important update for Medina Catheter users

A significant number of J pouch owners use the Medina Catheter to assist with emptying their pouch. It has recently been announced that the product will be discontinued. The Red Lion Group has been in contact with Wellspect (the UK distributor) for clarification and we can share the following update(s) from them.

Updated 24 November 2021

The following response was received from the marketing manager at Wellspect on 5 November 2021

We are still actively looking at potential alternative products. We have one promising option we are exploring at the moment, although it is not currently available in the UK. If it proves suitable, the next step would be to find a UK distributer willing to take it on. I have kept your contact details and will let you know how this progresses.

In the meantime, we have sufficient stock of the Ileostomy catheter and have not yet taken a decision on the eventual date for discontinuation in the UK. On current usage rates we have significantly more than 6 months available. While I completely understand their concern, I would urge all users to continue to order as normal.

Posted 15 June 2021

Unfortunately, our ileostomy catheter is produced in very small volumes and global demand is both low and in steady decline. We have therefore had to take the difficult decision to discontinue this product.

At current UK usage rates we will have sufficient stock to continue supply for a minimum of 6 months. While there are no direct alternatives currently available on the UK Drug Tariff, we are actively looking at products with other manufacturers/suppliers which may prove suitable.

We’ll aim to keep you informed regarding an exact date after which the product will no longer be available on prescription and also if there is any progresses with alternative manufactures/suppliers.

In the meantime, I’d like to extend my apologies for any inconvenience this has caused.

We have responded explaining that, while they label the product an “ileostomy catheter”, it is in practise also used by many J Pouch (and other pouch) owners, and the planned discontinuance is causing much distress in the pouch community.

We will keep you informed of any updates in particular with regard to a replacement product.

On that subject, Theresa Parr (RLG committee member) has for some time been an advocate of the Aquaflush system as an alternative to the Medina Catheter. It is also available on prescription. See here for further information.

“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.

RLG donates £5,000 towards pouch-related research

Red Lion Group has made a donation of £5,000 to St. Mark’s Hospital Foundation towards pouch related research

A delighted Jason Bacon (left), CEO of the St Mark’s Hospital Foundation, receives a £5,000 donation from Christopher Browne, Roar! editor and RLG PRO, at London’s St Mark’s Hospital.

The money which was raised by the Red Lion Group will help fund vital pouch-related research projects at St Mark’s and Central Middlesex Hospitals.

Mr Bacon commented: “We are extremely grateful for the Red Lion Group’s very generous donation towards supporting research at St Mark’s Hospital. This will help us in our charitable mission to support over 30 research fellows working alongside our specialist consultants and nurse teams.”

St Mark’s Hospital Foundation helps to fund innovative research that is undertaken at St Mark’s Hospital, a specialist in the treatment of bowel disease. For further information see https://www.stmarkshospitalfoundation.org.uk

Red Lion Group is a small charity run entirely by volunteers. Surplus funds are donated to the St. Mark’s Hospital Foundation which helps fund the innovative research projects undertaken at St Mark’s Hospital.

Write for Roar! and see your name in lights!

Do you have a story, whether moving or funny, to tell about you and your pouch? It could be published in next edition of ROAR!

The second major event in December – apart from Christmas – is the winter edition of Roar! magazine. And this year is no exception.

The main theme of the new magazine will be Diet. This is partly inspired by IBD specialist Gabriela Poufou’s compelling Zoom talk in August (you can hear it on the website) when she showed us how the way we eat and what we eat can make a significant difference to our general well-being and recovery from surgery.

We’ve already featured articles on fitness and mental health in previous Roar! magazines. You may have read them and, if so, I think you’ll agree that many of them were stirringly and skilfully written.

So to follow in the same vein, the December theme is Diet and I would love to hear your views on the subject and any attempts you’ve been making to improve your general lifestyle and well-being (haven’t we all!) – pandemic or no pandemic.

And talking of articles, do you have a story, whether moving or funny, to tell about you and your pouch? Or why not tell us why you decided to join the Red Lion Group and what you hope to achieve with the group in the future. Or you might have done something brave or intrepid such as join a climbing expedition or run a mini-marathon.

Whatever your story, however personal or pithy, we’d love to hear it. Please send it to Chris Browne, the Roar! editor, at cbrowne@brownemedia.co.uk.

The deadline’s 10 December.

Chris Browne
Roar! Editor

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.

Recommended annual blood tests for pouch patients

A new document has been added to the RESOURCES section of this website and can also be downloaded below.

It describes the blood tests that St. Mark’s patients usually have done as part of their annual checkup at the hospital.

If you no longer have follow ups at St. Mark’s or are not a patient there, then you can request that your G.P. does these as part of your Annual Long Term Condition review.

Blood tests explained

Download Now!

Check out our Resources page for other useful documents and videos.

Stoma and Pouch Care – Virtual information day

The London Bridges Walk 2022

The London Bridges Walk 2022

Smiley Film Awards – RLG needs your vote!

The COVID crisis has accelerated our movement to modern…

Important update for Medina Catheter users

“Zoom into summer 2021” – Summary of guest speakers

RLG donates £5,000 towards pouch-related research

Write for Roar! and see your name in lights!

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)

Recommended annual blood tests for pouch patients

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The Red Lion Group is a UK registered charity number 1068124