The Pancreatitis Supporters' Network
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You are here: Newsletter 4
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.
We are due another meeting of the Network and as you are no doubt aware
we are located at a new address below:
The Pancreatitis Supporters Network
Pocklington Rise
George Lane
Plympton
Plymouth
PL7 3LJ
My wife has taken over as Manager here for retired people with a visual problem.
There are purpose built married and single flats along with a section of
Full Care for the more frail Residents in a Homely environment.
Point of interest: If anyone has a
partially sighted/blind or registerable as such partner who would like to stay
in the guest flat, which sleeps two, write to my wife at the same address.
Cost is £7.50 per night. Now
that I have finished the advertising blurb, this is where the meeting will be
held.
Please let me know if you intend to attend as this will help with catering and
coffee! Respond by 7th April please!
Date of the meeting: Friday
15th April
Time of the meeting: 7:30pm
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INFORMATION
I have been in contact with you all over the year and would like to ask your
permission to give your name and address to everyone else who is a subscribing
member of the group. This is so that
you can write to each other and if you wish form a local group as well.
If you DO NOT want your address circulated then please let me know BEFORE
the meeting otherwise I shall send it out to everyone.
This will include new people as well as they join.
I SHALL NOT include your telephone number out of respect for those of you
who are ex directory or do not want to be contacted by phone.
I would think the best idea is to make initial contact in writing and
please be willing to respond. Some
of you have not in the past for various reasons but if you could just say
politely that you do not wish to enter into correspondence then at least the
person writing would know.
However, I would have assumed that if you
are interested in a Network you would be willing to make this small contribution
at least.
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NEW DEVELOPMENT
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 at:
The TSE Clinic
2-3 Charles Place
Bristol
BS8 4QW
Telephone 0272 293699
The principle it works on is that all pain nerves enter the spinal cord.
So this treatment is designed to relieve pain in all parts of the body,
Eg feet, knees, hips, spine, head, shoulders, elbows and wrists.
It is also effective in treating many types of pain, including those
resulting from:
Osteaoarthritic "wear and tear", such as arthritis
Common aches and pains, such as back ache and
Headache
Menstrual pain
Sports injury
ME
Cancer
Repetitive stress injury
However pains associated with nerve injuries, such as shingles, do not respond.
You are advised to let your GP know of your intention to try this form of
treatment. However as it is a drug
free form of treatment, it will not interfere with any drugs you might be
taking.
Tests have shown it to be effective in 70% of patients, producing relief for 10
hours or more. And the effects are
often cumulative - after and average of 5 treatments, 63% of patients derive
long-term effective relief.
TSE does not hurt or have any known side effects.
What is it and how
does it work?
I am no scientist or doctor but have talked to Geoff who swears by his machine
which he has bought to help him with his pain.
(I must say at this point when I saw him before he was using this he was
doubled over with pain and a week later, after using the machine he was walking
upright.). Basically it has two
electrodes which you fit to the top and bottom or your spine and then you plug
in the lead to the little black box and switch on.
The sensation is very like the TENS machine for those of you who have
tried it
WARNING:
DO NOT DO THIS WITH THE TENS!
This is DANGEROUS!! This machine has
been DESIGNED to operate in this way.
Geoff reported that he gained relief after about 20 minutes of use.
At the moment you can only be seen privately at about £25 per session.
You have to purchase the machine and you should check for the cost of the
same.
If you do go for treatment could you mention that you got the information via
the network?
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Note:
As with all information supplied in these Newsletters they are not a
substitute for your own GP/Consultants medical advice.
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Accounts
We have received the following monies in respect of donations and membership
payments:
£425 to 9 March 1994
We have made payments though the year as
follows:
4/11/93 Photocopying and Postage
£49.38
10/11/93 Fundraising Book
£7.50
2/12/93 Paper and Envelopes
£11.98
6/12/93 Data Protection Registration £75.00
14/12/93 Postage
£12.50
14/12/93 Purchase Blood Meter
£10.00
14/12/93 Ink cartridges x2
£37.13
9/3/94 Photocopying and Postage
£19.50
Total expenditure
£222.99
Amount of money carried forward:
Income
£425.00
Expenditure
£222.99
Carried forward income £202.01
This has to last until the next round of membership fees in April 1995.
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.
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NEW INFORMATION BOOKLET
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.
As soon as I receive enough copies for all of you I will do a mailing to
everyone in the Network of the same.
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Volunteers
Welcome to Pat Jefferson for volunteering to undertake some work for the
Network. Pat has a good eye for
articles and news broadcasts to do with the subject of Pancreatitis.
How she spots these is beyond me.
Anycase she has taken on the role of a Publicity Officer for the Network with
responsibility to leaflet any newspaper, TV broadcast etc about the Network and
what we do. This will hopefully
increase our membership.
When I publish the names and addresses of everyone in the Network it would be
helpful if anyone sees anything anywhere to do with this subject content to
notify Pat direct. It would be
helpful to send her a copy of the article or details of the programme, channel,
time of transmission if it was on television or radio.
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Membership Fees
Don't panic! This is not a request
for more money off everyone rather to let you all know that you can now pay by
standing order and if you are interested in future payments by this method then
let me know and I can send you the relevant paperwork to forward to your Bank.
As to Direct Debits, it looks like this will be a service that we shall
not be able to offer in the foreseeable future due to cost to the network of
setting this up initially and the administration costs of the same.
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Data Protection
Registration
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.
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Finally
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!
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Volume 1 Issue 4 REGISTERED CHARITY NUMBER 1027443 5/31/2009