Download Bile Acid Malabsorption(BAM)

Bile Acid Malabsorption(BAM)
Patient Panel Meeting
03/05/2013
Minutes
Attendees
Marie Bolton
Ann Crowley
Jane Addey
Penny Clarke
Joe Smiton
Breege Burke
Catherine Bailey
Nicola O’connell
R Arasaradnam
Aims of the group
Apologies
S Lucas
Contact Details :
[email protected]
Nicola.O’[email protected]
Via Switch 02476964000 bleep 4104
The patient panel was designed to work together to help improve patient services,
give patients a voice, provide a support network and improve awareness about the
condition. Dr Arasaradnam’s vision is to empower the group to improve services.
Initially the group will be run by Sister Catherine Bailey and Nicola O’connell who
will facilitate the group and support the running of the group, until such a time it is
able to be taken over by panel members.
Issues discussed
Referral process to hospital and the need to improve GP awareness as there is no
protocol yet.
How to get the right medications as colesevelam tablets are not licensed yet for BAM
but are prescribed by some doctors.
How we can raise awareness- ? A poster to be designed to have in clinic rooms, will
discuss more at next meeting.
Improving inpatient menus through discussion with dietician.
Patients would like have access to a nurse/ helpline for advice.
Nicola O’connell will try to arrange for toilet cards to be available for group members
and look into parking fees.
Next Meeting
The meeting will be held every three months; the next one is on Thursday 1st August
2013 at 6pm. The date and time can be changed to help improve attendance when
needed. Partners are welcome to attend as there input is appreciated.
We will arrange for a dietician to come to discuss diet. In future meetings we hope to
have a presentation from a doctor with more details about the condition and a Drug
Representative to discuss the medication.
Please share any thoughts or ideas on what you would like to get from the group.
Thank you for attending and we look forward to seeing you soon