Pancreatitis Supporters Newsletter Number Six

It is with thanks to Scott Bader of Wollaston and in particular to Mr David Everitt (whose wife sadly died of Pancreatitis) and his colleagues - Dean Nicholls and Tony Rose that I was able to purchase a second hand photocopier with service contract for the first three months out of their donation of £350.

Interestingly enough this donation came at a time when I was undertaking a course through the Birmingham Volunteer Sector on fundraising and part of this was to try and place the network into perspective.  As a matter of interest I have put the report to date below which shows something of the history of the network to date.

Why was the network developed?

Many people automatically assume that the pancreatic sufferer is an alcoholic. In some cases this may be true but it is insulting and upsetting to many to have this assumption made.

In some, the pancreas is so sensitive that the merest drop of alcohol is likely to induce an attack, but some people never touched alcohol!  On a visit to our surgery my wife mentioned to one of the partners "my husband has pancreatitis" - the reply was "Oh - drinks excessively does he?"  My wife's reply was sharp and to the point!

The effect on friends and family is devastating - the pain is unbearable at times and because no one has ever heard of pancreatitis it is difficult to explain.  One kind friend said to me - "Want an aspirin to clear it up?"

There is a need to educate both patients and the medical profession of this condition as to the types and causes.

Types of Pancreatitis

Acute Pancreatitis

This is an inflammation of the pancreas which develops very suddenly and which in the majority of cases (about 75%) improves steadily with good hospital treatment over the course of a week or so.  If more than one attack of acute pancreatitis occurs it is called recurrent acute pancreatitis.

Causes

Gallstones,
Alcohol,
Mumps,
Hyperlipidaemia,
Narrowing of the Pancreatic Duct,
Pancreas Divisum,
Annular Pancreas,
Surgery,
Idiopathic,
Pregnancy.

Severe Pancreatitis

We do not know why some patients develop severe pancreatitis.  Once this occurs, then the chances of complications and death are high.  Because we do not know all the factors responsible for causing the complications, treatment is sometimes not successful and patients can die.  For these reasons it is important that patients with severe pancreatitis are looked after by specialists.

In summary the network was set up to educate both the public and the medical profession to the condition known as pancreatitis.  Also the importance of patients with severe pancreatitis being treated by specialists in this field.

Life Story

It was with great sadness that I heard of Jen's death from Dave Everitt her husband.  Dave has been a great help to the network via his work with the Scott Baders Charity's donations. This years bought our photocopier. I asked Dave to write a piece about Jen and I have printed this below:

"After about ten years of suffering with Pancreatitis, Jen was getting in worse pain, after a Cat scan plus other tests and scans, the consultant could not find anything.

After more suffering he decided to have her in hospital, for more tests and a cat scan - nothing was found. He decided to operate, and unfortunately found an advanced cancer of the Pancreas.  After telling us the sad news ( Jen was the bravest of us all)  Jen was in hospital about ten days while the wound healed up.  I had Jen home with her bed downstairs, I slept on the settee.  My daughter looked after her while I was at work, and myself the rest of the time with the help from family and friends.
 The Rushden district nurses came in twice a day to refill Jen's syringe driver.  After about three weeks Jen's stomach became badly swollen, and I sent for the local GP, he thought it was fluid, and arranged for her to go into hospital to have it drained.
 I took her to the Hospital, and when the specialist examined her, he took me outside and said sorry Dave, I can't do anything and it is just a matter of time, this was on the Monday morning.

My eldest daughter and youngest son had gone on holiday the previous Saturday and I had the sad task of contacting them.  They came back on Tuesday lunchtime, and Jen passed away at 22.30 Tuesday night.  I am sure Jen was determined to see her children once more before she went.  The three weeks Jen was at home, we attended a wedding, and made several trips to the shops and Garden Centre (her favourite) in her wheelchair."

 I am sure you will join me in passing on our respects to Dave and his family along with the admiration for the strength Jen showed in her last days and Dave has shown in writing about Jen.

Sadly, cancer of the pancreas is one area in which the prognosis is not good - even today.

Information Update on Pancreatic Specialists

As promised in earlier Newsletters I have been in contact with the Pancreatic Society of Great Britain and Ireland for a list of specialists in members areas that we can get referred to for further information.  The Society have agreed to respond to individual requests as follows and I ask you all to READ THIS CAREFULLY and follow the proceedure so that we can ALL benefit from their support.

Thank you.

Pancreatitis Supporters Network - Advice for Patients

The Pancreatic Society of Great Britain and Ireland is willing to help pancreatitis sufferers who are having difficulty in obtaining specialist advice.  Pancreatitis is a difficult and sometimes complex condition to treat, and the Society has as one of its aims the promotion of high standards of care.

If any pancreatitis sufferer is having difficulty obtaining specialist advice, and they would like information about pancreatic specialists to whom they could be referred by their present general practitioner or hospital consultant, they should go to our website www.pancreatitis.org.uk then click on the link to the Pancreatic Society of Great Britain and Ireland then click on Patient Information.  You will then be able to find Specialists in your area or email us if in the UK for further help on psn@pancreatitis.org.uk
or use our contact form.

. Finally

A request came in for information concerning HRT and Pancreatitis and this was a response to this question when I wrote to Professor John Neoptolemos:

"I know of no correlation between HRT and Pancreatitis.  I am surprised to hear the women on HRT are being advised not to take it if they have had attacks of acute pancreatitis .......On balance, HRT is to recommended for the majority, if not all, of post menopausal women."

End

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