BAD UK are delighted to announce that we have been awarded a grant from the National Lottery Community Fund for our project Connecting People Living With BAD.
This award will enable us to roll out our support groups helping us to fulfil our pledge to build a network of local patient groups across the UK to provide support to those with BAD and their families and friends.
Full details can be found here.
POLL FINDINGS
Thanks to those of you who participated in our poll about your current experiences of obtaining bile binder (bile acid sequestration) medications.
We thought it would be helpful to summarise the findings. Whilst it’s concerning that some people are experiencing significant problems and are without bile binders (3.3%), it is good to see that a higher proportion of you (12.1%) have been able to obtain bile binding medications.
15.4% (161) of our active membership (1046) have participated in the poll
7.1% (74) - are experiencing no problems
0.8% (8) have successfully obtained an alternative bile binder
4.2% (44) - are experiencing delays in obtaining regular prescriptions
3.3% (35) - are unable to obtain bile binders due to being unable to get GP / consultant to change to an alternative or alternative prescription not being available either
NHS SPECIALIST PHARMACY WEBSITE UPDATE
The SPS have advised that yesterday they have updated their website with the latest information on the stock availability of bile binders and revised memo for GP’s and Pharmacists. The memo advises that the manufacturing of Questran & Questran light is moving over to a new company.
Things you can do to help your pharmacist obtain your bile binding medications:
🔸plan ahead for ordering your regular prescription by ordering your repeat as soon as your GP practice allows (depending on the area you live in different CCGs there may be variations in number of days before your current prescription runs out (e.g. 7-14 days) and the frequency of ordering repeats (E.g. some area only allow repeats on a monthly basis others allow regular or scripting to be ordered on a 3 monthly basis)
🔸submit your prescription immediately to your pharmacy and explain the shortage situation to them
🔸if your pharmacist is not aware of the problem then share with them this link to the Specialist Pharmacy Services website for all latest updates / actions pharmacists and GP’s / Consultants need to consider / undertake
We will continue to liaise with the NHS Specialist Pharmacy Services and update you as soon as we can.
Should the current situation continue we will monitor it through the use of polls as we have found this an effective way to gauge a snap shot view of how it is affecting BAD patients.
https://www.sps.nhs.uk/…/shortage-of-bile-acid-sequestrants/
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-…/
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.
******************************
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-…/
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.
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.
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
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.
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
