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summary of recent and current activities

The UKPT is actually involved in a far wider range of activities concerning the condition than is revealed by the website.

The site was originally primarily set up to help sufferers find out about the condition, to set up self-help groups, and to organise treatment workshops etc. However, there are other issues which we are involved in, but which are currently not mentioned on the website.

some of the activities are:

Giving general advice to people that have problems with paruresis in the context of certain situations they encounter. For example we have provided advice on an individual basis as to how those called for jury service might alert the authorities to their problem. Outcome: the feedback we have had is that although UK jury service excusal is at the discretion of the court, paruresis has been accepted as a valid reason for excusal in the cases where we provided this advice.

Supporting an employee where the employer adopted a "pee or you are fired" strategy to drug testing. This was in spite of the fact that a case in the USA has cost the employer hundreds of thousands of dollars in damages over that approach to urine testing. In fact, you'd be surprised as to who some of the employers are. Outcome: the employer arranged for a hair test that showed negative, and is now looking at altering their testing procedures.

The implication of the "pee or you're fired" drug testing strategy is being raised with those responsible for advising the government on guidelines and legislation relating to workplace and schools drug testing.

Supporting an individual who cannot pee away from home and cannot get his claim for incapacity benefit accepted. Such individuals need support, guidance and references. Outcome: a tribunal decided that the person's paruresis was such that, for the purposes of working, they had no voluntary bladder control, and restored the benefit.

Communicating with trade unions and union organisations who are concerned about the condition. This has already been the subject of an article in the TUC health and safety publication, and there is the possibility of more to come.

Working to get the condition covered in magazines and bulletins that go out to GP's. One of the biggest problems of paruresis is that it is a secret condition, which means that many in the media are oblivious to it.

Communicating with various child-health bodies who are concerned about schoolchildren avoiding school toilets due to:

  1. the state of the toilets
  2. imposed access/usage restrictions
  3. anti-social behaviour therein

There is growing evidence that habitual toilet avoidance, (even within the limitations of school hours/days) is sufficient to cause the development of long term bowel and bladder complaints that could persist throughout adult life.

The question as to who is responsible for setting and enforcing health and safety standards as regards school toilets is being pursued, although answers do not appear to be forthcoming. These health bodies are soon to launch campaigns about this.

Surveying users of catheters to compile a list of what's available, where to get information, and personal experiences of their use.


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