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.  

The Seven Mystery Gut Problems Your Doctor May NOT Spot

The Daily Mail recently ran an article on Professor Walters book, What’s Up With Your Gut, which included an interview with BAD UK’s Michelle O’Connor and highlighted the struggles Michelle has had over the years with BAD. The full article can be found here or by clicking on the image.

Charitable Organisation - we are now officially recognised!

We are delighted to let you know that we heard in March from the HMRC. They have approved our application and we are now recognised as a Charitable organisation for tax purposes. This means that donators can be confident in BAM Support UK's charitable integrity and we can also claim additional gift aid on the fundraising donations we receive.  

Our next steps are to continue to strive towards gaining the higher level of Charity status with the Charity Commission. Having this higher status level will enable us to knock on many more doors to apply for grants to support the charities work in raising awareness of the condition and funding essential research into improving the quality of lives for people suffering with BAD. However, before we can apply for this status we need to raise an income of £5,000. So please do take a look at our fundraising initiatives in this newsletter to see how you can support us - every penny will help and it's amazing how quickly it all adds up.

Review of British Society of Gastroenterology Management of Chronic Diarrhoea guidelines

BAD UK have been asked to represent patients on the review of the British Society of Gastroenterology Management of Chronic Diarrhoea guidelines. These guidelines specifically focus on the diagnosis of the different conditions that can cause chronic diarrhoea. Michelle, our Secretary, attended the first review meeting in March 16 and there were positive discussions on updating the section relating to diagnosis of BAD. These reviews can take a while to be completed as they have to be undertaken in line with NICE criteria. Michelle will keep us all updated as this review continues.

NICE SeCHAT Review Update

In February 2016 NICE (National Institute of Clinical Excellence) put out a call for comments on their review of the NICE guidance on SeHCAT testing and the recommendation to place the guidance on the static list. Their rationale for moving to the static list was that there was insufficient evidence on treatment tolerability to support SeHCAT testing for diagnosing the condition. BAD UK responded to the comment call expressing concern about the decision. We informed NICE of the positive impact having a diagnosis of the condition has on sufferers emotional, social and physical wellbeing and shared with them the findings from the Survey undertaken with the BSM Facebook group.  

Subsequently in March 16 NICE have advised that following reviewing responses from stake holders and becoming aware of the plans to update guidelines which could impact upon the position of the SeHCAT test in the diagnostic pathway for people with chronic diarrhoea they have decided to defer the review until March 17.