URGENT - MAY 2019 QUESTRAN, QUESTRAN LIGHT & COLESEVELAM UPDATE

We have heard back from the NHS Specialist Pharmacy Service. Unfortunately it is not good news and they have provided the following information on the situation.

Questran - no resupply date

Questran Light - There is stock of Questran Light but only on emergency/restricted supply via Alliance Healthcare - which is the only route community pharmacists can obtain supply and they must be account holder with Alliance.

The company say the products are not being discontinued but intermittent supply problems ae expected globally over 2019 and reduced availability of active drug is likely for the foreseeable future.

Colesevelam - Sanofi is out of stock of colesevelam until week commencing 17 June when it should be back at wholesalers.

Therefore, in the interim if you local pharmacies are unable to obtain a supply of questran & colesevelam for you, colestipol granules (Brand name Cholestid) is the only alternative bile acid sequestrant available.

https://www.sps.nhs.uk/…/shortage-of-colestyramine-powder-…/

Questran & Questran Light Availability Update

We have been advised by the NHS Specialist Pharmacy Services this morning of the following:

Questran Light: is now back in stock through usual pharmacy wholesalers

Questran: is on emergency/restricted supply via Alliance Healthcare only (Tel 03301028412- they will only speak to account holders and require account number)- prescriptions would have to go through their prescription validation team; The pharmacy needs to email copy of prescription to: scriptvalidation@alliance-healthcare.co.uk. There is no quota in place for how many one can order, they will supply quantity on the script.

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For those of you whom continue to have problems obtaining Questran From your Pharmacy and are unable to tolerate Questran light then please advise your GP of the document provided on the Specialist Pharmacy Services Website (via the attached link) which advises that Colestipol sachets are the first line alternative to Questran.


https://www.sps.nhs.uk/…/shortage-of-colestyramine-powder-…/

UPDATE: BMJ Guidelines on the Investigation of Chronic Diarrhoea in Adults

BAD UK  are delighted to share with you the revised 3rd addition of the Guidelines for Investigation of Chronic Diarrhoea In Adults (3rd Edition) which have just been published. BAD is now a significant feature of these guidelines and they recommend that:

► If functional bowel disease or IBS-diarrhoea is suspected, we recommend that bile acid diarrhoea should be excluded with either 75SeHCAT testing or fasting serum C4 (7α hydroxy- 4-cholesten-3-one) levels. A test and treat approach is recommended as opposed to blind empirical therapy unless no diagnostic test is available (Grade of evidence level 1, Strength of recommendation strong).

We were invited to be part of the working development group as patient advocates along with Lawrence Kelman. Being part of this working group opened our eyes into the amount of hard work , time and dedication undertaken by the NHS clinicians to develop these guidelines to ensure patients receive the most up to date investigation pathways. A huge thanks to them.

This is an excellent step forward to help others be diagnosed much earlier and increase the awareness of the condition with clinicians.

The guidelines can be accessed here.

Mail Online Article on BAD

5th December 2017

Whenever Bernadette Lindley goes anywhere new, whether it’s a restaurant or cinema, there’s one thing she has to find first: the loo. For every day of her life, Bernadette, 34, has battled with diarrhoea. ‘It has ruined my life, destroyed my confidence and even stopped me leaving the house.As a child, she was told by doctors it was something she would grow out of — when she didn’t, the problem was variously put down to food intolerances and then irritable bowel syndrome (IBS), but nothing she tried alleviated her symptoms. The full article can be accessed here.

Happy Flush “Just Before” Air Freshener

18th August 2017

As part of their Care to be Aware campaign, Happy Flush, the makers of the “Just Before” air freshener are aiming to make BAD a more widely recognised an understood condition. BAD UK’s Alex Hardwick is featured in their campaign explaining, by means of a question and answer session, his experiences of living with the condition. The full article can be accessed on their Facebook page via this link and as always please do take a look and share the article as widely as you can.

Best wishes,

BAD UK

Bile Acid Malabsorption as a Cause of Chronic Diarrhoea

Professor Julian Walters, Consultant Gastroenterologist at Imperial College London, recently gave a presentation at the Digestive Diseases Week conference in Chicago. His presentation was based upon the survey undertaken by BAM Support UK and the Bile Salt Malabsorption Facebook group in 2015.

Professor Walters discusses the survey and bile acid malabsorption in this video interview and you can see the article and video published by GI & Hepatology News via this link.

Please do take a look and share the article as widely as you can.

BMJ Open Gastroenterology Publication

COLLECTIVELY WE ARE MAKING A DIFFERENCE....!!

Living with the physical and emotional impact of our condition is tough and the ongoing lack of awareness amongst clinicians and the general public makes it even tougher.

In December 2014 we decided we wanted to change things and speak out about how our condition has and continues to impact on our lives from a patients perspective. With the skills of Lawrence Kelman and Clare Pitchford (from the bile malabsorption Facebook group) and Michelle O'Connor (our Charity Secretary) BAD UK undertook a survey which 100 of you kindly participated in. We shared the outcomes of the survey with Professor Julian Walters , Professor Ramesh P Arasaradnam and Dr Ayman Bannaga whom advised that the survey findings from the patients perspective warranted submission to the British Medical Journal Open Gastroenterology for publication.

We are delighted and very excited to share that our article, which can be accessed here, was accepted by BMJ Gastroenterology and BAD UK have utilised funds raised to have the article placed in the open on line section so it is free for anyone to access. We would like to thank all of you whom took the time to participate, those of you whom have supported our fundraising, Clare and Lawrence for the time they dedicated with Michelle to undertake the survey and finally a very special thanks to Dr Ayman Bannaga whom led the article submission on our behalf.

Please do take a look and share the article widely

Midlands Gastroenterology Society

Yesterday BAD UK attended our first NHS conference!!

It was the Midlands Gastroenterology Society conference which was held in Birmingham. The event was a special celebration for the society with the event being held for their 50th year anniversary and 100th meeting. For the first time patients groups and Charities were asked to join Gastroenterology Nurses and Doctors and we were delighted to be invited to attend. Thanks to Jonathan Briscoe, Alex Hardwick, Penny Clarke and Naelee Hardwick our stand well and truly stood out. We were also given a few additional places so 3 members of the BAD UK - Coventry Patient Group were able to come along too.

We all had a great day talking to Gastroenterologists, nurses and other patients groups about the aims of BAD UK and the ongoing impact BAD has from the patients perspective post diagnosis. We were encouraged to hear that there is increasing research interest in BAD, other consultants are keen to support our Charity's work and a couple of other organisations have offered their support in helping us get the word on BAD out there!

We would like to thank everyone for your ongoing encouragement and support to BAD UK. Huge thanks to those whom have supported through donations or purchasing our toilet cards and keys, this support went towards funding the materials for our stand! Plus a very special thanks to Professor Ramesh Arasaradnam (Consultant Gastroenterologist) and his team for their support in helping and encouraging us to take our first step in raising awareness with NHS clinicians.

Massive Thank You and Good News!

We would like to thank each and every one of you whom has followed / supported BAD UK so far. You have helped us to be an established Charity, raise essential funds and to be in the position where are now of making a difference.

We are excited to announce that BAD UK in the next few months will be:

  • funding an open publication of the BSM/BAD UK survey in the British Medical Journal - Gastroenterology. Many of you will recall we asked you to participate in this survey in December 2015 with the support of the BSM Facebook group. This is a significant step forward in helping raise awareness of our condition but......most importantly it’s the 1st article from the patients perspective of the impact bile acid malabsorption & diarrhoea (BAD&D) has on the quality of life. We would like to thank Lawrence Kelman, Clare Pitchford and Michelle O'Connor for undertaking the survey and our Clinical Support network who have helped in finalising the article for publication. We would also like to thank two amazing donators whom have donated a considerable amount of money, one anonymous and the other a wonderful lady whom is a member of our Coventry group who donated her Birthday monies to our fund!! We will let you know when the article will be published.
  • attendance in November at a UK Gastroenterology conference to raise awareness of our condition! Again another crucial step forward to raise our conditions’ profile and we are so very excited as we have been given our 1st conference stall "free of charge". A special thanks to all of you whom have purchased one of our "Just Can't Wait" toilet cards/radar keys or participated in one of our "unique" raffles at the Coventry Patient Support Group. We have prioritised the funds you have raised to support this conference and Jonathan Briscoe, Penny Clarke, Alex Hardwick & Naelee Hardwick have been busy ensuring our conference stall well and truly stands out to get BAD recognised!
  • developing our website. 18 months ago when we decided to progress the Coventry Patient group into a UK Charity, the initial ideas and words we sketched on paper became our charity logo thanks to Jon Briscoe's IT skills. Thanks to Nicki O'Connell's Triathlon fundraising event, we are now in a position where we can invest in increasing our website functionality. We would like to hear your views on what you would like to access?
  • expanding our patient support groups. We aim to have 5 additional groups set up in our 1st wave. London will be the next location in January 17. Please do let us know where you think the other 4 groups should be placed next....and whether you would like to support running a group!!!

Once again, thank you for your ongoing following on our page.