“Informing People”


Reg Charity No 1131517 - ©copyright Proventus 2015  - Hosted by Orbital Net

Turning information

into knowledge

To the world you may be one person, but to one person you may be the whole world”

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“Concentrate on working to control the controllable, the rest will happen anyway”

Autoimmune, neurological and inflammatory diseases - A varied group of conditions, which involve almost every human organ system and share many similar symptoms.

Unlike cancer, which is an umbrella term for a range of diseases, auto-immunity has yet to be wholly embraced by the medical community, and the public, as a category of diseases.

Even though there is some universally accepted knowledge about auto-immunity its victims, mostly women - have suffered from a lack of focus and a scattered under-funded research approach.


Awareness of new and novel treatments

The pharmaceutical industry is approaching a “patent cliff” whereby the strong market position it currently holds is set to decline over the coming few years.

Most drugs that have currently been approved for use have been researched and developed not by “big Pharma” but by the smaller pharmaceutical companies.


Neurological diseases and conditions

The result of damage to the brain, spinal column or nerves, caused by illness, injury or genetic process. Many of the precise causes of neurological conditions are either unknown or not well understood.


Some neurological conditions may be life-long and people can experience onset at any time during their lives. Neurological conditions/conditions can be present from birth while others commonly appear in early childhood, whilst others affect mainly older people.


Some diseases/conditions can be life threatening, whilst others, cause life-long disability affecting a person’s quality of life and their ability to live independently.

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Many neurological diseases/conditions, even relatively common conditions, are poorly understood and levels of awareness in the public eye are low, or they are ignored, . Also there are a large number of rare conditions which are largely unheard of by many health and social care professionals and the public.

The Proventus Project

Learn “How to Think” not “What to Think”

When we share a common language, we're able to communicate with others and there is no lack of standardised vocabulary for clinical terms. However, there is no vocabulary of the words that are used by people to describe their illness, their experiences and what it means to them.


Disease modifying drugs are given a clinical score by health professionals who generally will see a person with a disease as a number rather than a human being.

Health professionals may generate a prescription for a medication against its considered efficacy as opposed to it's proven efficacy.


An often neglected point is whether a particular medicine, whose clinical trials score apparently show improvements, will actually help in improving a persons “Quality of Life”


Improved clinical trial parameter scores should be set against whether the use of any medicine will add to a persons quality of life. That is for them to actually be “feeling better”.


Inform People - Information on this Webpage is not for profit and freely available to be shared by all. If you have any information, comments or tips we will ensure that it is made available on this Webpage - contact us


Social Media Links - This is to enable people  to search and link up with others who have a condition the same or similar to theirs.

People, or relevant organisations and support groups, who follow Proventus via social media are listed on our Webpage, unless they request not to be added?

Being a good communicator is a skill and some are better at it than others, but it is a skill that can be learnt and may go some way in helping those who have to be told bad news.



The Proventus Project

An organic Website run by volunteers for the benefit of all. . About Us

Health professionals meet people who have chronic conditions. They may not be wrong to think that for them there is much more to life than the daily eternal struggle that people who have chronic conditions experience. What some health professionals may not see (or care to see and understand) is that for others a seriously compromised quality of life has become for them the new norm.


Why do we make this point? Its because feedback from some people we have met tell us that when they have been informed of their diagnosis about a chronic condition they have been told by the health professional in an ill-mannered and unfeeling way.


Note - It has to be understood that this occurs only amongst a small percentage of health professionals, but it does happen and it is unacceptable.  


Democracy - We are not all in this together, we are only led to believe that we are? We must stop merging moral arguments with economic ones. We must stop ignoring people who have chronic conditions. We must stop putting profit before cure. We must question those large national and international charities who rake in billions of Pounds, Dollar’s Euros etc. each and every year (money in does not equate with money out). We must question and take to task Governments and other elected bodies voted in by the people to supposedly represent them. We must question any misuse of tax-payers money that goes into health systems and the seemingly profiteering that accompanies it. Nobody pays except the ordinary day to day citizen  that is about 95% of us.

Let’s look to the future - This web site has many visitors globally and the number is growing. It is fair to say we’re pretty revved up about that, as the web site grows so does its information base. So let your fingers race through our pages and if you have any comment to make (good or bad) or any related health information that may help others we will publish it on our Webpage making it available for all to learn from.

 

Acknowledgement is always given unless requested otherwise.

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