Equipping People To Make Sense Of What They Are Told
We hope you find the information you are looking for and that it is helpful to you.
The object of our charity is to provide information about new and novel treatments
for autoimmune, neurological and inflammatory conditions.
Our charity, like so many small charities, is entirely volunteer run.
You are welcome to redistribute or reprint documents from this website without seeking
our permission provided:
1) you do not abbreviate, add to, or change the text in any way; 2) the authorship
information is retained; and 3) www.proventus.org.uk is credited as the source.
Getting your voice heard by decision makers?
How many individual sufferers have to fend for themselves, your not alone?
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.
The majority of drugs that were approved for use last year have been researched and
developed not by “bigPharma” but by the smaller pharmaceutical companies.
Drugs are given a clinical score by health professionals who generally will see a
person with a given condition as a number rather than a human being.
Health professionals may generate a prescription for a medication against its considered
efficacy as opposed to its proven efficacy.
An often neglected point is whether a particular medication, whose clinical trials
score apparently show improvements, will actually assist in improving a persons “quality
of life”.
Improved clinical trial parameter scores should be set against whether the use of
the medication will add to the persons quality of life. That is for them to actually
be “feeling better”.
There is much more to fending of the consequences of any symptoms of a disease than
undergoing drug therapy alone.
Third party web site links are provided to assist you further in your search for
information you may be seeking.
The term autoimmune disease refers to a varied group of illnesses that involve almost
every human organ system. Unlike cancer, which is an umbrella category for a range
of diseases, auto-immunity has yet to be embraced by the medical community, and the
public, as a category of disease.
Autoimmune diseases cross the different medical specialities, but because these specialities
usually focus on diseases within their particular category, there has been virtually
no general focus on auto-immunity as the underlying cause.
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 research
approach.
When seeking help and information it invariably costs them time and money - a lot
of money.
At Proventus we believe they should receive helpful information and support for minimal
or no cost.
Proventus attempts to be a well informed listening organisation and to be highly
focused on the day to day problems others endure.
Commercial Sponsorship
Is, of course, not an issue of concern uniquely to Proventus.
Any perception that other organisations were able to influence the information provided
by and the work undertaken by Proventus, would damage our reputation for impartiality
and the questioning efforts we make.
The Sufferer
Often the sufferer of an autoimmune disease [s] is not taken seriously when first
consulting their health professionals. Their symptoms are likely to be vague in the
beginning with a tendency to come and go, and are difficult to describe accurately.
That person may be shunted from specialist to specialist and undergo a series of
tests and procedures before a correct diagnosis is made, which can sometimes take
years.
They may be labelled chronic complainers in the early stages of their illness. This
can be devastating to any person as they try desperately to find out what is wrong.
Meantime many suffer significant physical damage and end up carrying this health
burden for the rest of their lives because of the delay in diagnosis.
The Disabled Blue Badge parking scheme is intended to support people who have a genuine
need. Abuse of this scheme is widespread and you will find this occurring in the
parking bays of supermarkets, airports, railway stations, on the high street.
