October 2016 – Volume 2 Issue 9
In this Newsletter:
Are you ready for the Conference?
Injections stopped? What’s next?
Calling all Students
Stomach Health Update
In the News
Are you ready for conference?
Do come along if you can to hear the latest on research programmes we are involved with, hear about alternative treatment regimens, get advice and guidance on employment and education issues and meet and share your experiences with other members.
We have an impressive list of speakers due to attend the day-long event, too many to mention them all in the newsletter, but you can find the full list here on the website. They include our Ambassador Dr. Chris Steele, Professor John Hunter, Professor of Medicine, University of Cranfield; Professor Martin Warren, Professor of Biochemistry, School of Biosciences, University of Kent and Dr. Anna Guildford from the Dept. of Tissue Mimicry, University of Brighton.
Tickets cost £20 for members and £50 non-members and can be purchased via the website.
Injections stopped? What next?
“I am sure that my GP would not have listened to me alone. The society’s intervention was priceless and has put an end to an incredible amount of distress and anguish.
One of the regular issues the society has to deal with is GPs stopping members’ injections. The reasons are many and varied, but regardless of the reason there is something that can be done.”
1. Go back to your doctor – tell them you have spoken to the PA Society and that they have advised you that injections are for life patients that have been diagnosed with Pernicious Anaemia. If that doesn’t work…
2. Pull together your doctor’s name, the practice manager’s name and the surgery telephone number. If you can, also supply the name of the clinical director of the NHS Trust your surgery is part of. Provide that, along with your name and date of birth to the society. They will…
3. Contact the practice manager, advise them that your life-saving injections have been stopped and, in light of the new BCSH guidelines, ask that they review the matter in light of the call. That request will be followed up by email if required. Most cases usually get resolved at this point, but if they don’t…
4. The society will write to the Clinical Director pointing out the problem and our experience has shown that this will have the desired effect.
Did you know you can give the society a Christmas bonus, just by doing your Christmas shopping using Easy Fundraising, the UK’s leading good cause shopping site. Simply register, do your on-line shopping and we benefit when you check out. They have over 3,000 shops and websites working with them and have raised over £13 million for UK charities.
Calling all students
Don’t forget the society is here to help you continue with your education. We recommend that you make tutor(s) aware of your condition before your studies start and let them have a copy of the leaflet for teachers and lecturers. Making them aware of the situation before you encounter any problems makes it much easier to get the support and understanding you need. If you are experiencing problems however, simply telephone the office – if there is no answer do leave a message and somebody will get back to you as soon as possible.
A medical research facility has recently reached out to the society to recruit patients to take part in a trial of a new tablet that may ‘dissolve’ Neo Endocrine Tumours (NETs).
NETs are generally small benign growths can occur in various parts of the body but those with PA are more prone to developing them in the stomach. Although doctors are not generally concerned about the increased gastric cancer risk for PA sufferers as it is relatively low, NETs are of more concern. Most cause no problems whatsoever, but there is the chance that they can become carcinogenic which is why they need to be monitored.
Representatives from TRIO, the pharmaceutical company that has developed the new drug, will be at the conference in December to tell us more and provide details of how to get involved.
Prof Mark Pritchard, co-author of the letter published in the highly respected Journal of Alimentary Pharmacology and Therapeutics noted that very few patients with Pernicious Anaemia received an endoscopy at diagnosis and questioned whether this should be routinely performed, will also be there.
The society has heard that the Department of Health and other interested parties are engaging with pharmaceutical companies and ‘suggesting’ that they may want to investigate the possibility of developing a 1mg or 2mg tablet of B12 that could be prescribed by doctors to treat Pernicious Anaemia.
The society retains the view that the evidence that oral supplementation can be used to effectively treat PA is weak. Our aim is to get the way in which the disease is diagnosed and treated thoroughly and professionally reviewed.
We want newly diagnosed patients to be offered a choice of treatment based on their individual needs. And to do that all of the other delivery methods, including skin patches, nasal sprays and sub-lingual tablets or spray, need to be thoroughly evaluated. That evaluation should not only assess their effectiveness in correcting the patient’s B12 deficiency, but also in how the patient responds to particular delivery methods.
In the summer, one of our members contacted her local BBC television centre to tell them how awful she felt on the three-monthly injection prescribed to treat her PA and that call resulted in some great media coverage on the topic, on BBC Radio Oxford, BBC Berkshire and BBC South Television. We were able to get some key message across about the inadequacy of the treatment. You can listen to the interviews on our website. The BBC article on the item can be found on their website.
If you are happy for your story to go public please let us know so we can try and get more coverage and keep PA in the news.
Help others by organising to meet up locally for a coffee or lunch: start your own Support Group! We are looking for members who would like to become a Support Group coordinator for their area.
Have another idea how you can help? Let us know!
To apply or for more information just call the office or send us an email.
Attendees at the recent South Wales Support Group have been the first to hear about a new handheld device that could be used to monitor the haemoglobin of patients on a daily basis, using just a pin-prick blood sample. The company developing the device, Eva Diagnostics, believes it may offer a benefit to our members and was keen to speak to some PA sufferers to discuss this further. Representative of the company will be at the conference in December.
Member support groups are great for members who feel isolated and alone. In due course we hope to recruit someone to co-ordinate and oversee the setting up of groups, but in the meantime do visit the community page here on the website to find out if there is one near you.