Paruresis Projects

Projects

The UKPT is involved in a far wider range of activities 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 a number of other issues and developments which we are involved in.

The Paruresis Virtual Reality Project (PeeVR)

The idea of designing a Virtual Reality (VR) based study was first conceived in the mind of Mr Agni Paul, a Computer Science Masters student and Researcher from Nottingham Trent University. His aim was to test the effectiveness of VR in Paruresis and also to create a low cost immersive treatment application to help patients test their fear in the safety of their home. After several meetings and discussions with the International Paruresis Association and UKPT, he designed and developed a 3D restroom environment to test on individuals who experience Paruresis.

In October 2017 Agni conducted the first VR Paruresis testing in the world with the support and supervision of UKPT. A Samsung Gear VR wireless headset was used to simulate an interactive public restroom with various levels of anxiety triggers. Each individual’s anxiety levels were recorded, and a feedback discussion was also conducted to determine any further improvements which needed to be implemented into the software. While it is too early to draw an absolute conclusion, the effectiveness of the medium proved to be highly positive.

What is next?

Based on the individuals’ feedback, Agni and the UKPT are working on adding new functionalities and environments to the existing software prototype. A second environment (an airplane toilet) has already been designed and also tested with the board of trustees. The research has also been submitted for the 2018 International Conference on Disability, Virtual Reality and Associated Technologies (ICDVRAT) and awaits peer review.

With the launch of better VR hardware in 2018, this study holds a lot of potential to help tech savvy individuals to take the early steps in battling Paruresis.

Some of the other activities are:

Giving advice to people who have problems with paruresis in certain situations which are difficult to avoid. For example, we have provided advice on an individual basis to someone called for jury service. Exemption from UK jury service is at the discretion of the court, but on this occasion following our intervention paruresis was accepted as a valid reason for the individual to be excused.

Supporting an employee where the employer adopted a "pee or you are fired" attitude to drug testing. This was in spite of the fact that a similar case in the USA had cost the employer hundreds of thousands of dollars in damages. Following our negotiation the employer agreed to use a hair test instead (that showed negative), and went on to review their testing procedures.

The implication of the "pee or you're fired" drug testing is an ongoing concern to us and we take a keen interest in government guidelines and legislation relating to workplace and schools drug testing.

Supporting an individual who could not pee away from home and so couldn’t get his review for incapacity benefit accepted. UKPT supported the individual through the tribunal process. The tribunal came to the conclusion 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 was the subject of an article in the TUC health and safety publication.

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 condition which is rarely mentioned, so 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 in the toilet area

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 disorders that could persist throughout adult life.

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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UK Charity Registration Number 1109541