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you are here: newsletter 4 and 5 < archive < home
related pages: newsletters 1 , 2 , 3 , 6 , 7 , 8 and 9 , database
Welcome to all of you members who have subscribed to the Network! I am really pleased with the response to date and hope that we shall continue to grow as we are at present.
I have heard of a new developments in pain relief from Marian and Geoff Brown. It is called a Transcutaneous Spinal Electroanalgesia or TSE for short. It was developed by Dr A J R MacDonald and Dr T W Coates
Note: Already covered under X-Pain machine on home pages.
You may be interested to note that we bought a blood meter for £10.00 for one of our members who is diabetic as well as having pancreatitis and due to hardship could not afford to purchase one for themselves. The network used the money (£10.00) donated by a lady whose husband died of the condition to purchase this. For the sake of privacy of the parties involved their names have not been revealed.
I hope that we would in the future be able to offer a similar service to others in similar situations. Indeed we have access to another Blood Meter for £10.00. Without instructions but in full working order if anyone is interested please feel free to contact me. If you cannot afford it yourself due to hardship then put in a request with a note from your Social Worker to this effect and this could be provided by the Network.
If anyone out there has any old blood meters they no longer use and would like to send them to me I can redistribute them to people in the network. Donated ones would be free of charge on a first come basis and postage could be possibly covered by the Network.
If anyone has any ideas of other pieces of equipment that might be useful then let me know. Bear in mind that we do not have a lot of spare cash at the moment but we will look at any ideas at least.
Alternative Methods of Pain Relief
At last we are going to have an information booklet available to all people with Pancreatitis. It should theoretically be available to read at the time when you are diagnosed with the condition. I have seen the first draft of it on the 14 March, this was due out at the end of January but as usual with all things there have been delays. I personally think it is very readable and have requested a copy for all of the members of the network. This came out of a meeting with Mr J Neoptolemos, Duphar and myself and it is mainly thanks to John Neoptolemos who has done all the work that this will finally become a reality. Alright, enough of the blurb and what does it contain? The rough draft that I have read contains information on the following:
Where is the Pancreas?
What does the Pancreas do?
Special Investigations - All the tests that we all have had for the
diagnosis of the same.
What is Acute Pancreatitis?
Causes of Acute Pancreatitis
Severe Pancreatitis and its Complications
Chronic Pancreatitis
Does Pancreatitis Run in Families?
Cancer of the Pancreas
Living without a pancreas
Living without a spleen
Titles of Doctors dealing with pancreatic disease that you may meet
Useful Organisations
This altogether runs to 30 double spaced pages of A4 so you can tell it is quite detailed.
WATCH THIS SPACE for more information.
These are now a set of THREE booklets available by POST from The Pancreatitis SUpporters Network.
As soon as I receive enough copies for all of you I will do a mailing to everyone in the Network of the same.
As I hold information about you on computer (Names and Addresses and Telephone Numbers) I have had to register the Network with the Data Protection Agency, this is to protect you from anyone gaining unlawful access to your details and hence the reason why I asked you earlier on if you had any objections to me supplying everyone else with your name and address. Note: I did not say telephone number as I thought people would be happier to make initial contact by letter.
Further to this I would like to float an idea to you all for your comments. I would like to build a database with more detailed information about us all. This would include information about your medication, types of tests you have had, whether or not you have had surgery etc.
What for?
The idea is to see if there are any common problems, medication, causes amongst us all. This would be published as information for us all to read but without names. The data would be presented in a form such as:
Percentage of us who are diabetic as well.
Percentage on different drugs
Percentage who have had various tests
The idea is to see if there are any trends in the success rate of diagnosis
and causes of the disease.
Obviously the more that join and fill in the questionnaire the better.
I would like to then circulate to those members of the medical profession involved in this work this data to see if we cannot encourage someone to take this up as part of a larger study on the disease.
If there is a positive feedback on this idea then I will circulate a form which I will ask you all to fill in. Also if anyone has any ideas what they think would be useful to include in the questionnaire then let me know.
It is not meant to be an invasion of your privacy but rather a method of gathering as much information about this condition in the one database so that correlation and trends can be observed. This will be a long range and on going project. The more of you who respond favourably the better will be the results of the data for all of us.
Remember, this is YOUR Network. Please feel free to get involved. Even if this is only by word of mouth you would be surprised how many people we have contacted by this means.
Try your local radio station, often they will put out a call to people with the condition for you or you can announce it yourself! Give out my telephone number as a point of contact if you wish. I only ask that you let me know that you have done this so I don't start wondering what all the calls are suddenly for!
What other information do you want? Is there an article you would like to write? If you have a MSDOS based computer and would like to send it on a disk that would be most appreciated but not essential. Any format acceptable - 5 1/4", 3 1/2, 360, 720, 1.2Mb or 1.4Mb. Do not worry if the last bit meant nothing to you it would if you use a computer. This is just laziness as it saves me having to retype your article or information. However do not let this put you off writing. ALL contributions gratefully received!
Addresses of Joined Members
This section has been removed for internet publication to conform with Data Protection Act in the UK.
Firstly, the Database idea I suggested in the last Newsletter.
I wrote to Mr Neoptolemos about this for suggestions and this was his response to the idea:
"Pancreatitis is an extremely complex field and there is no doubt that detailed studies and basic research are required but I doubt if a database of members of the Network would prove of scientific value. Of course, it may be of interest for the Network as a whole to have this information."
So, the ball is back in your court - do you want to have a database of information on members of the network or not?
I also posed the question regarding trauma and pancreatitis and gained the following response:
"Yes, trauma is an important cause of pancreatitis but more often leads to tearing of the pancreas with leakage of pancreatic juice causing either ascites or a pseudo-cyst."
As to the distribution date of the booklet I mentioned in the last Newsletter I asked about a probable publication time scale and was told:
"I am present pursuing the preparation of the booklet with Duphar but a serious estimate of its publication is 9 to 12 months."
In a separate letter to Mr Neoptolemos regarding the publication of names and addresses of consultants' names he indicated that he has written on our behalf to request the same. I will let you know of progress on the same.
I would like to offer our thanks to Mr J P Neoptolemos or Professor J P Neoptolemos as he is now known and offer our congratulations on his promotion and thanks for his help to date with our Network questions.
In Memorium
It is with sadness that I end this newsletter with the report of the deaths of two of our members from pancreatitis. I am sure all of us send our sincere sadness and regret on their passing. In order to preserve the privacy of the families involved in their time of grief I have not mentioned their names here but they know who they are and I have written to both on the networks behalf.
End
