We’re often asked how can I best help the campaign for better testing and treatment? This is how…..

A multi-centre randomised control trial (RCT) is currently being planned in the UK. The trial will:

• Primarily, compare the current standard treatments (low dose, short course antibiotic prophylaxis) against higher dose, longer term antibiotic treatment.

It will also:

• Examine how UTIs are diagnosed
• Analyse the social and economic impact on sufferers
• Investigate why some people are more susceptible to this disease
• Enable more understanding about the behaviour of the bacteria involved in chronic UTI.

The trial would be the first of its kind here in the UK for chronic and recurrent UTI and could help influence guidelines around chronic UTI. The centres involved include the Lower Urinary Tract Symptoms (LUTS) clinic at the Whittington Hospital, London led by Dr Rajvinder Khasriya.

Trials require substantial funding. The National Institute of Health Research (NIHR) is one of the UK’s leading medical research funding providers. The team behind the trial are asking NIHR to fund the study.

As part of their funding considerations, the NIHR also ask the public to help them with research suggestions that matter to them.

Write to the NIHR today

Please write to the NIHR to tell them about the urgent need for research into recurrent and chronic UTI.

You need to explain, in no more than two short paragraphs, the issues you have faced in diagnosis and treatment and critically how it has affected your life – both social and financial sides.

If they are appropriate you could include:

• When you first suffered from UTIs
• The issues you have faced around testing, diagnosis and antibiotic management of your UTI
• The effects on your life of a UTI – have you been unable to continue your educational studies, lost your job, your marriage or suffered depression?
• What activities have you had to give up because of your urinary tract infections – going out, meeting people, walking, exercise?
• The financial consequences – for example are you having to claim disability benefits, PIP, are you housebound?

Please do not mention any clinicians with whom you are now in treatment or who have treated you previously. The focus must be on the testing, diagnosis and previous medication management of your urinary tract infections and the consequences to you.

The NIHR have a form on their website where you can write about your experience and suggest funding into chronic and recurrent UTI.

Write to the NIHR today

Why this trial is so important

The National Institute for Clinical Excellence (NICE) in the UK commenting on its Quality Standard page for recurrent UTI states: ‘the need for evidence based guidance for recurrent UTIs’ and that ‘no source guidance is currently available’.

This trial will go a long way to address this lack of evidence.

We hope it will help to shape the guidelines for GPs and secondary care consultants when managing patients with recurrent and chronic UTI.

A new approach is long overdue. Let’s make sure this trial gets the funding it deserves.

Go to the NIHR website where you can find out more.