Stories - Pouch support charity

“Can’t wait” and “medic alert” card for J Pouch

We are delighted to report that Red Lion Group has produced a “Can’t Wait” / “Medic alert” card specifically designed for “pouchees”!

Updated 13 July 2022

This is the first such card designed exclusively for people with an ileal-anal pouch (IPAA) or J pouch. One side of the card is useful if you are caught short and need urgent access to a toilet. The other side is a Medic Alert which displays the universal “Medic alert” symbol and a QR code which links directly to a page on the Red Lion Group website containing a simple pictorial description of the IPAA surgical procedure and other important information for pouchees and medical practitioners regarding the management of patients with an internal / J pouch.

All Red Lion Group members will receive the card free of charge, distributed with the summer 2021 edition of our ROAR! magazine. If you haven’t received yours, or you are a non-member and would like one, contact our membership secretary Gary Bronziet at membership@pouchsupport.org.

New members will receive the card with the latest edition of ROAR! upon joining.

For non-members, we suggest a small donation to cover cost and postage – but why not become a member (for just £10.00) and receive the other benefits of joining the Red Lion Group?

You can become a member at pouchsupport.org/join

Click on SCAN ME to view the medic alert information

News

St. Mark’s stoma/pouch team nominated for Nursing Times awards.

The St Mark’s Hospital stoma and pouchcare team has been shortlisted in four categories for the Nursing Times Awards.

These are an important source of recognition as the Nursing Times, like the British Medical Journal, is one of the leading magazines in the medical and health sectors.

The awards ceremony will be held at London’s Grosvenor House Hotel on two dates.

The first two nominations are for the Nursing Times awards on 26^th October 2022 when the St Mark’s team has been nominated for its book “Stoma care – a guide for patients” in the ‘Promoting Patient Self-management’ and also in the ‘Theatre and Surgical Nursing” category.

The second two nominations are for the Nursing Times Workforce Summit & Awards, which is on 22^nd November when the team has been nominated for Best Use of Workplace Technology – Digitalisation of Stoma and Pouch Care Services and finally, Zarah Perry-Woodford has been nominated in the category Nurse Manager of the Year !

So let’s send the team our very best wishes – they certainly deserve to win!

St. Mark’s Hospital Stoma and Pouch Care team

For information how to contact the St. Mark’s Stoma/Pouchcare team see https://pouchsupport.org/contacting-the-pouch-team-at-st-marks-hospital/

News

RLG T-Shirts now available

High quality Red Lion Group T-shirts with the new logo are now available for purchase at a cost of £10 each plus £2.50 post and package. White and with the red and grey logo displayed prominently on the chest, they are a striking addition to any summer wardrobe. These are very good quality T-shirts and you won’t be disappointed!

A guide to sizes is provided below:

Size	S	M	L	XL	XXL
Chest (inches)	34/36	38/40	42/44	46/48	50/52

Please contact David at info@pouchsupport.com with your size(s) and delivery instructions and see below for payment instructions .

Please send your payment by scanning QR code below or click here. Cost is £10.00 each plus £2.50 for post and packing. All proceeds will help to bolster the RLG finances for 2022.

When you go to the payment website you will see the following page.

Enter the applicable amount as advised in the AMOUNT box to make a one off donation.

Please do NOT tick the Gift Aid box.

Events

Kangaroo Club Information Day 2022

Our sister Pouch Support group, The Kangaroo Club based in Oxford, has announced that it will be holding an in-person Information Day. Please see copy of their official announcement below.

I am delighted to let you know that the Kangaroo Club Information Day 2022 will be taking place on Saturday 8th October at Jury’s Inn, Oxford.

Following questions about it at last year’s Information Day, the theme of the day will be pouch longevity and given the very positive feedback about last year’s venue, we are again holding the Info Day at Jury’s Inn.

All are welcome – those with pouches (well behaved or not), those considering pouch surgery, all supporters… – and the event is free (although if you can afford it a donation of £10 per person in your party would be gratefully received).

Please put the date in your diary and let us know if you (and whoever else you would like to bring) are planning to come, by e-mailing info@kangarooclub.org.uk.

For more information and updates about the programme being planned for the day please click HERE

News

You can now Search all Pouch Support Content

You can now search all Pouch Support Content

The Red Lion Group website (pouchsupport.org) is one of the foremost repositories of J-pouch related information, an invaluable resource for people considering or living with a J-pouch (or any configuration of ileo-anal pouch).

The content includes video recordings from the leading experts in the field of pouch surgery from St. Mark’s Hospital, spanning many years, and every edition of ROAR! the bi-annual magazine produced by the Red Lion Group since its foundation in 1994. The vast amount of information has made the need for a search facility a necessity, and we are delighted to announce that this is now available. See Video below for a demonstration.

Watch Video for Quick Demo

Tips on Using the Search Facility:-

The Search Options appears on the top menu and also on the Whats New and Resources pages. In all cases, the Search function will search ALL available resources.
As you enter your Search Criteria, the built in Live Search feature will show top matches in a drop down list as you type. You can select any item from the drop down list, however this is not the complete list of matches
Once the Live Search Information is displayed, if you click on the magnifying glass, this will take you to the complete list of matches which may extend over many pages.
If you enter more than one word in the search box, eg. John Nicholls, the search will find all occurences of John and all occurences of Nicholls. To specifically find a combination of words, they should be enclosed in double quotes eg. “John Nicholls”, will only find matches where John and Nicholls appear together.

Please support the Red Lion Group

Remember the Red Lion Group is a charity run entirely by volunteers. If you are not already a member, please join at pouchsupport.org/join or to just donate click here.

News

Important update for Medina Catheter users

Updated 15 July 2022

Would you like to particpate in trial of a potential replacement product?

A significant number of J pouch owners use the Medina Catheter to assist with emptying their pouch. Following the announcement that the Medina Catheter is being withdrawn from production, we are pleased to announce that a potential replacement product has been identified and the Pouch Nurse team at St. Mark’s Hospital is now in the process of starting a trial with the new Marlen catheter.

They are currently working closely with the company to introduce the product in the UK, including Drug Tariff approval.

The plan is to start officially trialling the Marlen catheters, hopefully at the beginning of August (pending delivery and logistics).

We wish to help them by identifying existing medina catheter users who would like to participate in the trial. They will be looking for a small sample of 10-15 people initially.

All participants would need to provide feedback and agree for their anonymous testimony to be shared and used in research.

If you are interested in participating in this trial, would you please send your details to info@pouchsupport.org. Further details will be provided in due course.

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.

News

A double tribute to Morag Gaherty

The Red Lion Group owes former membership secretary and Roar! editor Morag Gaherty a double debt of gratitude.

Morag who sadly died of cancer earlier this year was one of the pioneers of the group when it was founded in 1994. Working closely with St Mark’s Hospital’s senior pouch nurse specialist Julia Williams, it was Morag’s drive and determination that helped transform RLG from a small patient support group into a national and now international charity.

So you can imagine the committee’s surprise and gratitude when we heard that Morag had left us a £3,000 bequest in her will.

Morag’s husband Brian who had a pouch op after suffering from FAP (familial adenomatous polyposis) was also an active founder member of the Red Lion Group and served as chair of RLG for three years.

When Brian passed away in 2005 Morag continued to be an active member of the committee, mainly due to her concern that one of her three children might inherit FAP, a genetic condition that can cause bowel cancer, from their father.

Morag was always a vibrant and good-humoured presence at Information Days and RLG committee meetings. Her lively articles and acute observations about pouchcare and modern treatment were also a delight to read in various editions of Roar! magazine.

Morag was a woman of many parts. A trained chartered accountant, she founded and ran a successful online reusable nappy business, appropriately named The Nappy Lady, for almost 10 years – and the company is still trading.

Morag who lived in Bearsted, near Maidstone, Kent, leaves a daughter Lucy, aged 23, and a 21-year-old son Thomas.

Events

Ileo-anal Surgery – A Guide for Patients

Ileo-anal 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.

News

Contacting the Pouch Team at St. Mark’s (and other…

Contacting the St. Mark’s Hospital Pouch Team and other useful contacts

You can contact the Pouch Team at St. Mark’s Hospital by phone on 0208 453 2099
or by email at lnwh-tr.internalpouchcare@nhs.net

If you leave a message, they will do their best to respond to you within 24 hours.

St. Mark’s Hospital Pouch Team (from left) Petya Marinova, Zarah Perry-Woodford, Rali Marinova

You can find further details of the St. Mark’s Hospital Pouch and Stoma nurse team at https://www.stmarkshospital.nhs.uk/services-a-z/stoma-care/

Other contacts at St. Mark’s Hospital.

ST MARK’S SPECIALIST SURGICAL PRACTITIONERS –
For surgical wound related problems or pre-assessment queries

Email: lnwh-tr.stmarkspractitioner@nhs.net

ST MARK’S ENDOSCOPY –
For Endoscopy procedure questions or appointments

Telephone: 0208 235 4130
Email: lnwh-tr.endoscopy@nhs.net

Website: https://www.stmarkshospital.nhs.uk/services-a-z/wolfson-unit-for-endoscopy/

ST MARK’S ADMISSIONS –
For questions regarding your admission

Telephone: 0208 235 4055
Email: lnwh-tr.stmadmissions@nhs.net

ST MARK’S OUTPATIENTS –
For outpatient appointments questions

Telephone: 0208 235 4051/0208 963 8853
Email: lnwh-tr.smopd-appointments@nhs.net

ST MARK’S IBD TEAM –
For any IBD queries – e.g. IBD medications, Iron Infusion

Telephone: Tel:0208 453 2368 (Advice line) /Secretary: 020 8235 4026, Email: lnwh-tr.ibdnurse@nhs.net

ST MARK’S INTESTINAL FAILURE UNIT –
For Roundwood/IRU questions

Telephone: 020 8453 2214
Email: LNWH-tr.IFU@nhs.net

ST MARK’S NUTRITION NURSES –
For Roundwood/IRU Nutrition nurses questions

Telephone: 0208 235 4120
Email: LNWH-tr.St-Marks-Nutrition-Nurses@nhs.net

ST MARK’S BIOFEEDBACK –
For biofeedback appointments and queries, contact the Biofeedback team

Telephone: 0208 453 2458
Email: lnwh-tr.biofeedbackphysiologystmreferrals@nhs.net

ST MARK’S MEDICAL SECRETARIES –
For Consultant appointments and queries, contact your Medical Consultant secretary

Dr Donnelly/Dr Gabe/Dr Holman’s secretary –
Telephone: 0208 235 4196
Email: dora.michaelides@nhs.net

Dr Naghibi’s secretary – Telephone: 0208 235 4084

Dr Amar Sharif/Dr Nikolaos Kamperidis’s secretary –
Telephone: 020 8869 3058
Email: Bharti.Huda@nhs.net

Professor Hart/Dr Akbar’s secretary –
Telephone: 020 8869 5808
Email: sokantey@nhs.net

ST MARK’S SURGICAL SECRETARIES –

For Consultant appointments and queries, contact your Surgical Consultant secretary

Miss Vaizey/Professor Faiz/Mr G Thomas’s secretary –
Telephone: 0208 235 4020
Email: susan.russell6@nhs.net

Mr Warusavitarne/Mr Mehta/Ms Williams’s secretary –
Telephone: 0208 235 4168
Email: meeta.maru@nhs.net

Ms E Burns/Mr A Antoniou/Mr I Jenkins’s secretary –
Telephone: 020 8235 4177
Email: a.elie@nhs.net

Mr Tozer/Miss Asha Senapati’s secretary –
Telephone: 020 8235 4195
Email: rose.gonzalez@nhs.net

Professor Clark’s secretary –
Telephone: 020 8235 4018
Email: anne.wheelhouse@nhs.net

PATIENT ADVICE AND LIAISON SERVICE (PALS)

If you need advice about St. Mark’s services, don’t know where to turn to, or have concerns about your care, the Patient Advice and Liaison Service (PALS) is there to help.

For PALS contact information go to https://www.lnwh.nhs.uk/pals/

Events

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!

“Can’t wait” and “medic alert” card for J Pouch

“Can’t wait” and “medic alert” card for J Pouch

St. Mark’s stoma/pouch team nominated for Nursing Times awards.

St. Mark’s stoma/pouch team nominated for Nursing Times awards.

RLG T-Shirts now available

RLG T-Shirts now available

Kangaroo Club Information Day 2022

Kangaroo Club Information Day 2022

You can now Search all Pouch Support Content

You can now search all Pouch Support Content

Important update for Medina Catheter users

Important update for Medina Catheter users

A double tribute to Morag Gaherty

A double tribute to Morag Gaherty

Ileo-anal Surgery – A Guide for Patients

Ileo-anal Surgery for Ulcerative Colitis – A Guide for Patients

Contacting the Pouch Team at St. Mark’s (and other…

Contacting the St. Mark’s Hospital Pouch Team and other useful contacts

Other contacts at St. Mark’s Hospital.

London Bridges Walk 2022

Roll up! Roll up! for the Main Event

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The Red Lion Group is a UK registered charity number 1068124