RWT Selected for World-Leading Trial into Potential Treatments for BAD

More than 500 people will be recruited for a £2m clinical trial hosted in Wolverhampton which will be a world-leading study in treatment of a common cause of diarrhoea.

Three potential treatments for the symptoms of bile acid diarrhoea (BAD) will be examined in the four-year study, funded by the National Institute for Health and Care Research, with hopes the first recruit will be on board this month.

For full details click here.

Lottery Grant: Connecting People Living With BAD

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.

LATEST UPDATE ON BILE BINDER SHORTAGES & FINDINGS OF YOUR EXPERIENCES FROM OUR POLL

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/

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