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The Orkney Islands Crohns & U.C. N A C Group.

" The Orkney Islands "

" Crohn's And Ulcerative Colitis "

" National Awareness Campaign Group "

This Campaign Group was started in Nov 2005 by the founder member Mr. Roddy Flett with help along the way from his brother Mr Trevor Flett. Roddy is a self employed crafts worker who lives in the Orkney Islands with his wife and family.
The significance of Roddy's achievements since the group started is the fact that he started the group from scratch after making one enquiry on the Internet about Crohn's with no previous knowledge of the subject at all.

After finding a great deal of information about Crohn's from the Internet, Roddy then found out about the great work of Professor John Hermon-Taylor at St George's Hospital in London
And the fact that there is now a proven link (That the Government won't acknowledge)
between IBD &

(MYCOBACTERIUM AVIUM SUBSPECIES PARATUBERCULOSIS)

The Fact that they know where this bug gets into the Food Chain through Milk and Meat And Water.
But the Government still are not doing enough to stop this happening,they need to be put under more pressure to act in a more effective way to stop this on going infection of our food chain.

And that is now a well proven fact

And the amazing fund raising by Tim Page of The Chronic Crohns Campaign UK is an incredible help to John Hermon -Taylor's work on his Amazing New DNA Crohn's Vaccine that is the most outstanding Break Through in the History of Crohn's.

Roddy carried on working alone in his efforts to do more for Crohn's research and Crohn's sufferers and did a brilliant article in his local paper " The Orcadian " which did a lot to raise awareness nationwide.

Trevor Flett started helping his brother Roddy after the success of the Orkney News Paper article. Trevor lives in Inverness with his wife and family.

Trevor kept the ball rolling in Scotland by raising awareness further through the local Inverness Newspaper " The Inverness Courier " and the National Newspaper " The Press And Journal " through their reporter Mr Ian Ramage.

Trevor has also spoken to local GP's as well as MP'S and MSP'S from The Conservatives, Labour and the Liberal Democrats just to name a few and Roddy has contacted GP's, MP'S and MSP's in his county to keep the ball rolling.

Trevor had a meeting in Inverness with Conservative MSP Mary Scanlon who then went to The Orkney Islands and met Roddy.

As a result of that meeting Mary Scanlon MSP took the Crohn's case to the Scottish parliament and managed to get Crohn's put on the National Agenda.

The most important thing that we have learned with all our efforts is the fact that anyone can get up and do something to help The Chronic Crohns Campaign UK and every little bit adds up to make a big difference.

We are all ordinary " Joe Bloggs " type people. We have managed to get this far by getting up and going forward and speaking to GP's, MP'S, MSP'S and Journalists and anyone else that would listen and we have managed all this without any help from " people in high places " or friends of friends who know people in high places.

We have managed all this so far on our own in our counties with nothing more technical or fancy than a simple home PC and a good working phone line and the will power to go the extra mile at every opportunity.

The good news here is that everyone reading this article can do the same as we have done and that includes you my friend reading this article at the moment.
Everyone reading this article now who is suffering from Crohn's or has a friend or family member who is suffering from Crohn's has to contact every GP, MP, MSP and journalist in your county and make sure that you contact at least one MP, MSP or Journalist every day, repeatedly, until we get the message through to our doctors and hospitals to use there influence and power to push the government until they get the message through to the government that Crohn's is a serious condition to have and needs to be taken more seriously.

The hard truth to face here is the fact that if we don't get up and do something ourselves no one else will. Our doctors and hospitals only know so much the rest we will have to do ourselves such as forming awareness action groups like this one or supporting research by professors like John Hermon-Taylor or supporting fund raisers like Tim Page.

The main point to note is the fact that if we don't all get up and do something ouselves, every day, such as speak to your GP's, MSP's, MP's or Journalist then we are not doing enough. Every one that makes this effort can help to make the difference and if we don't then we are not doing enough for ourselves and if that is the case then we have no one to blame but ourselves at the end of the day.

" The Folk's Who Holler Get The Dollar "

This Campaign goes on 24hrs a day every day of the week and will keep going on and we need your help folk's, every day of the week.

Regards,

Roddy Flett &
Trevor Flett.
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Article by Mary Scanlon MSP for The Chronic Crohns Campaign UK (c/o Roddy Flett, Orkney).

I Mary Scanlon MSP have been very pleased to meet and work closely with both Roddy and Trevor Flett, and to play a part in raising the issue of Crohns up the health agenda of the Scottish Executive.

Raising this issue on the Parliamentary level, and highlighting the concerns of all those involved in The Chronic Crohns Campaign UK gives us an excellent opportunity to highlight the main problems encountered by patients with Crohns Disease

I have been in regular correspondence with the Health Minister over the last year regarding this topic, and am determined to work on behalf of Roddy and Trevor to ensure that Crohns patients get the drugs, therapy and support that they need.

The Minister has consistently stated that unfortunately, the cause of Crohns Disease is not currently established, however I hope to continue to highlight the work and raise the profile of those involved with The Chronic Crohns Campaign UK, as increasing recognition within Scottish Executive Ministers and Health Department officials is crucial to fostering greater understanding of the causes of Crohns Disease, and ensuring research towards its future prevention and treatment.

Yours truly,

Mary Scanlon MSP.

Mary Scanlon

Health

S2W-17320 - Mary Scanlon (Highlands and Islands) (Con) (Date Lodged 14 June 2005): To ask the Scottish Executive whether there is any proven link between Mycobacterium Avium subspecies Paratuberculosis and Crohns Disease.

Answered by Mr Andy Kerr (27 June 2005): Experts worldwide differ in their opinion on whether Mycobacterium Avium subspecies Paratuberculosis (Map) causes Crohn�s Disease. The Department of Health�s Advisory Committee on Dangerous Pathogens has on two occasions (1992 and 1998) concluded that a link could not be established on current evidence. A similar view was reached by the EU Scientific Committee on Animal Health and Animal Welfare who recommended increased and urgent research activity to resolve the issue. The Food Standards Agency and the UK Health Departments have kept and continue to keep this matter under close review with their expert committees, but the evidence on cause and effect remains inconclusive.

S2W-17324 - Mary Scanlon (Highlands and Islands) (Con) (Date Lodged 14 June 2005): To ask the Scottish Executive what action is being taken to prevent Crohn's Disease.

Answered by Mr Andy Kerr (24 June 2005): The Chief Scientist�s Office (CSO) is currently funding three research projects relating to Crohn�s Disease at a total cost of �334,000. Two of the projects, namely, "Gene-environmental interactions in inflammatory bowel disease" and "An investigation of the genetic determinants of susceptibility of Crohn's Disease in the Scottish population" are being carried out at the University of Edinburgh. The third project, namely, "Magnetic Resonance Imaging of small bowel in Crohn's Disease: evaluation of a novel orally administered hypersomolar bowel-distending agent" is being carried out at the University of Dundee.

The CSO works closely with the Medical Research Council (MRC), the main agency through which the UK Government supports medical and clinical research. It is an independent body deciding what research to support on its own expert judgement. In 2003-04, the MRC spent �1.4 million on research relevant to Crohn�s Disease. This included a recently completed project entitled "Microbiology of the gastrointestinal tract" carried out at the University of Dundee.

Details of these projects can be found on the National Research Register (NRR), which is a database of on-going and recently completed publicly funded research projects. This can be accessed at www.nrr.nhs.uk/search.htm. The nrr shows that in Scotland, in addition to the projects already mentioned, there are a further three projects researching Crohn�s Disease taking place at the University of Edinburgh.

S2W-17322 - Mary Scanlon (Highlands and Islands) (Con) (Date Lodged 14 June 2005): To ask the Scottish Executive what the cause is of Crohns Disease.

Answered by Mr Andy Kerr (24 June 2005): The cause of Crohn�s Disease is unknown, although it is common for more than one member of a family to suffer from the condition, and therefore there may be genetic factors involved.

I refer the member to the answer to question S2W-17324 on 24 June 2005. All answers to written parliamentary questions are available on the Parliament's website, the search facility for which can be found at http://www.scottish.parliament.uk/webapp/wa.search.

S2W-17319 - Mary Scanlon (Highlands and Islands) (Con) (Date Lodged 14 June 2005): To ask the Scottish Executive how many people suffer from Crohns Disease, broken down by NHS board area.

Answered by Mr Andy Kerr (24 June 2005): Estimated number of people with Crohn�s Disease at the end of 2004 based on hospital admissions between 1981 and 2004.

NHS Board of Residence

Estimated Number of Patients : -

Argyll and Clyde

1,257

Ayrshire and Arran

1,005

Borders

220

Dumfries and Galloway

352

Fife

1,377

Forth Valley

874

Grampian

1,845

Greater Glasgow

2,496

Highland

683

Lanarkshire

1,485

Lothian

2,043

Orkney

59

Shetland

81

Tayside

1,047

Western Isles

56

Scotland

14,880

Source: SMR01 Linked database, ISD.

Patients with Crohn�s Disease could be treated in a variety of health care settings. Many will be treated in acute hospitals at some point.

The table shows an estimate of the number of people with Crohn�s Disease based on the number of people with an inpatient or day case episode for Crohn�s Disease at some time in the period since 1981 that are still alive in 2005.

RODDY FLETT
The Orkney Islands

Crohn's & Ulcerated Colitis

National Awareness Campaign Group.

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