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Since the meeting I have successfully registered us as a Charity with the Charities Commission and we now also have our own Bank Account. this means that all of you who sent cheques, postal orders will be seeing this money being paid out of your accounts in the last few weeks.
Our Bank Account details are as follows:
Unity Trust Bank
4 The Square
111 Broad Street
Birmingham
West Midlands
B15 1AR
Account Numbered 54000797 00
Account Name: The Pancreatitis Supporters Network
PLEASE make all cheques payable to:
THE PANCREATITIS SUPPORTERS NETWORK
Cost: Individual - £5.00
Family - £8.00
Introduction to Mr Neoptolemos MA MD FRCS and Colleague - Questions from Newsletters and Floor
Mr Neoptolemos then arrived and introduced himself. He described the various medical bodies associated with pancreatitis:
Pancreatic Society of Britain and Northern Ireland
British Society of Gastro Enterology
European Pancreatic Club
International Association of Pancreatology.
a) What are the various names and forms of pancreatitis?
Described that there were two main forms of pancreatitis those of ACUTE and CHRONIC.
The acute tended to be a one off situation which were generally caused by a particular agent such as gallstones and the removal of the cause removed the occurrence of another attack except where people ignored the cause of the attacks which then triggered another acute attack of pancreatitis.
The Chronic was a continuous occurrence of pancreatitis. The pancreas tend to be diseased in some way and the situation does not improve but gets steadily worse over the years.
What is Pancreas Divisum?
This he described as being caused during the foetal development of the pancreas which develops in a front to back manner.
The front bit which develops towards the front of the foetus is called ventral and the part that develops towards the back of the foetus is called dorsal. As the child develops in the womb the other organs opus these bits together so it folds in the middle and joins up. Sometimes this does not happen correctly and this is called pancreas divisum. There then could develop a stricture and this can cause acute or chronic pancreatitis.
b) What is a pseudo cyst?
The pancreas is formed of lots of little sacs of fluid each draining into a bigger and bigger duct until they reach the main duct for drainage. When this fluid reached the duodenum it then becomes activated. Sometimes due to a blockage these can be activated within the ducts of the pancreas which then starts to eat at the tissue inside the pancreas, rupturing or bleeding may also occur. These usually heal on their own.
c) Why do they (pseudo cysts) keep filling up?
Sometimes they do not heal up on their own and hence the reason they then fill up again. this could be due to a stricture developing later on for example.
d) Does alternative medicine help?
No. Though a lack of vitamins in the diet of poorly fed individuals could be helped with vitamin supplements.
e) Can diet help the prevention of pseudo cysts?
No. though it should be noted that small regular meals are better than starving for the day and then binging on a large meal in the evening as this can bring on an acute attack.
f) What is the significance of a redundant colon?
No significance as far as pancreatitis is concerned. The colon's job is to absorb the fluid from the stools before they are passed and if you have a very long colon this can give rise to pain.
g) Questions from the floor
Is there any particular diet to follow? No. there is no need to avoid any particular food but you may find that certain items in some individuals can trigger an attack and these should be avoided.
Life Story of Roger Morris as described by Valerie
Morris
who attended the meeting of the Pancreatitis Supporters
Network.
Note: To save space the story has been edited and the cut sections noted with ......
My son Roger is now 17 years old, and we are so proud of the way he has coped with his chronic ill health over the past four years, I want other people with Pancreatitis to read this, in the hope that it will be of some help to them.
At 12 Roger was a very lively young boy......He had a high pitched hearing loss to cope with due to his prematurity and had adapted well to a hearing aid.
Then suddenly around the time he was celebrating his 13th birthday he had a very bad attack of what our Doctor diagnosed as Gastro Enteritis.....I was told not to worry, this was common in children. He soon recovered and returned to school. Three weeks later he had another attack,.....this time losing 5lb in weight. A Doctor told me this was Gastro Enteritis again and to let him sip water. Three weeks later he had another attack and a different Doctor came out....she diagnosed ' wind'. Another two attacks followed at three week intervals. Paracetomol was of no use at all, but I was not allowed to give him anything stronger. By now I was quite frankly terrified. I had developed Pancreatitis at the age of 13 and although I was told it was not hereditary ...I had this niggling worry at the back of my mind.
A routine visit came up to see Roger's Paediatrician, .... and he was admitted to Basingstoke Hospital. He was there for three weeks under observation and had all the tests done, ECRP, Scan, CT Scan and blood tests....he definitely had Chronic Pancreatitis.
.....The suddenly for six months, the pain went, and apart from the odd day, Roger seemed fine, and even gained a little weight.....His Paediatrician was delighted and hoped that Roger had 'grown out of it' though he had always been honest and admitted it was not his field.......In July 1992 Roger was now 16 1/2 years old .....He started getting pain again for three days each week....I did convince our Doctor to get him an appointment with a Gastric Specialist, but again he had never come across Pancreatitis in teenagers.....When his weight dropped to 8st 12lbs I knew his life was virtually in my hands. In sheer desperation I phoned my Pancreas Specialist in Bournmouth who had in fact retired....and straight away he told me to get my GP to let Roger have a second opinion. he recommended a Mr Russell at the Middlesex Hospital in London.
.....At last on January 17th Roger was admitted to the Middlesex Hospital. Within three days we knew how very ill he was. As well as Pancreatitis, he had a Cyst and masses of stones in his pancreas, plus a massive duodenal ulcer, brought on by the high dose of pain-killers he had been on.......Soon they discovered that his Cyst was bleeding and his blood count dropped so low that he had to be given a transfusion......Mr Russell decided the time was right to operate ...I was shaking as I signed the consent form, but I knew that he (Roger) would die without surgery.
To everyones tremendous relief, things went well.... But his pancreas was tiny, it had nearly burnt itself out, leaving the insulin producing cells. this apparently was very, very rare, not seen in this country, but found in places like India....
Seven and a half weeks after being admitted Roger came home.....His recovery has been amazing. Four months later Roger is back at College full time....He is now on Nutrizym 22 when he eats and Gliclazide to maintain good blood sugars.
....We thank God for Roger's stubbornness and will power to get him through this.
And for Mr Russell, who gave us our son back.
The Carers' Story! (Apologies to the Canterbury Tales)
I wanted to write an article for the Newsletter and decided to write about Jim's condition from the carers point of view in order to encourage others of you out there to write in.
Bank Holiday 1992. Jim had been diagnosed as having Pancreatitis for about two years and I wondered if there were other sufferers within the West Midlands so I went on the Ed Doolan Radio Show in the West Midlands and the phone did not stop ringing. (A good ploy for others of you in your local area to tell people about the network!). At this point I would like to say that I am a Senior Social Worker for the Blind in Birmingham and you know how bossy Social Workers are and like getting people organised. I am often involved with rehabilitation and mobility for people and my clients have said it does help to talk to someone with the same condition. I do not know what it is like to suffer the incredible pain of Pancreatitis but I know that talking to others does help.
"Can I write a bit about Jim? - I hope he will print this." I met Jim in February 1989 at the College where we both worked. I knew he was a diabetic but at this stage I did not know he had Chronic Pancreatitis.
The hospital he was under at this time said his frequent attacks of pain and nausea were due to diabetes and infections.
He was told he was a hypochondriac.
In retrospect I feel some sympathy tinged with anger as I think it is difficult to recognise the symptoms unless a Consultant is dealing with this condition all the time.
I give thanks to a caring sister in the Diabetic Department of our hospital who seeing Jim in the middle of an attack referred him on for help. As they say the rest is history - Jim takes enzymes and morphine for the bad days. He is a brittle diabetic which does not help and has a repeating dislocation of the shoulder which is still being investigated and operated on.
In conclusion may I sum up - and I know all the partners, carers, friends and relatives of those who have Pancreatitis will say the same:-
"You can never get near the toilet! and air fresheners are a must!!"
On a serious note I'm sure we've all read articles about the severity of the condition, mortality rate etc. I admire Jim for all he does - I think I would give up - he cares deeply about the network. I love him very much, hate to see him in such pain and hope someone someday will bring a cure for this awful condition. It wrecks lives and brings great suffering to those who have it.
On a practical note are you on the benefits that you should be? Millions of pounds go unclaimed each year so find out if you could be getting benefits such as DLA (Disabled Living Allowance) or DWA (Disabled Working Allowance by telephoning the Social Security Free Phone Line on 0800 882200 and let us know how you get on. Be warned as with a lot of benefits there is a knack of filling them in so go to you local Citizens Advice or Neighbourhood Office and ASK FOR HELP! Also do not be put off if at first you are turned down - CLAIM AGAIN!
This article is to bring to everyones attention the new Care Card that is being developed for general use around the country. At the moment this is at the trial stage so what are we talking about?
A care card is a small credit card size piece of plastic which has a smart chip attached to the surface. This is then read by a computer in a similar way to our cash point machine cards.
What does it contain? The outlined subject headings in the initial study are as follows:
Registration Details
Health Care Professional Identifiers
Ethnic Group
Language Spoken
Religion
Medication/Prescription details
Allergies/ drug sensitivities
Donor Status
Emergency information (Medic Alert type data)
Symptoms
Examination findings
Laboratory information
Tests and measurements
Diagnostic information
Employment details
Administrative data including financial data
The data set will not be compulsory filled in, rather it is designed to carry all these types of information.
Access to the data is determined by codes built into the Key Card (or Smart Card) and there are three levels of access to this information.
Eight and a half thousand cards have been issued at the start of the trial in the Devon town of Exmouth since 1st March 1989 and have been in continuous use and the people who had access to the information or could write to the card were the following health care professionals:
Family Doctor
Dentist
Hospital and Community Pharmacist
as well as the District General Hospital.
Patients Attitudes towards the card:
Only 1.8% at the trial end believed that carrying the card with health information was a bad idea as opposed to 4.8% initially; those being undecided having also reduced from 11% to 3.4%. Interestingly enough although there was provision made for patients to read information off the card only 1% of the population came to view their information and interestingly enough 74% of these people did not think that the card contained enough information and that ALL information regarding their health records should be on the card.
Conclusion to the study, under section headed discussion finished:
.....However the trends demonstrate that the Care Card appears to be meaningful and worthy of further investigation with respect to it's potential as a data transmission device within the Heath Service and as a potential aid to the delivery of value added health care and cost containment.
Remember if this takes off you heard about it first in this Newsletter! Think of the advantages of having all your attacks logged and the medication you were on if you were admitted to hospital in an emergency!
Note: As with all information supplied in these Newsletters they are not a substitute for your own GP/Consultants medical advice.
End
