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Fowler’s syndrome helpline

Looking for information about Fowler’s syndrome? Struggling and need emotional support? The FSUK helpline is here for you. If you need to talk, we will listen. Book a helpline phone, video or text session below.

Call: 07432 424 666 

Drop-in: Mondays 10am-12pm

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Take our helpline survey

Here for you

How FSUK’s helpline can help you:

FSUK’s helpline is for those who have, or suspect they have, Fowler’s syndrome, CIUR or urinary retention. We know that Fowler’s syndrome can be incredibly isolating and sometimes you need to talk to someone who understands. We have trained helpline staff who have the condition who will be able to help you with:

  • Emotional support

  • Information about fowlers syndrome

  • Guidance on managing symptoms

  • Information on treatment options

  • Support for family and friends

  • Assistance in finding local resources

  • Help to deal with professionals.

How to contact the helpline

There are bookable and drop in appointments available.

You can book a pre-bookable slot via our google calendar link below. These sessions can be via phone, text, or video call. Please let us know your preference in the booking section.

 

You can call us during our drop in appointments, which are currently Mondays 10am-12pm

07432 424 666

Text 07432 424 666 and request a call back. Please note the text line is only open during helpline hours,

 

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How the helpline works

Helpline remit

  • FSUK advisers provide short term support, signposting and information for those who have Fowler’s, their friends, family or medical professionals 
  • FSUK provides this service over the telephone, via email and via text messaging.

If you are in immediate need of help

  • If you need urgent medical or mental health advice, please contact your GP or NHS 111. In the event of a medical emergency or mental health crisis, please go to your local A&E department or call 999. You can contact the Samaritans on 116 123

If you are based internationally

  • The helpline is based in London, England, but is offered internationally. We are unable to advise on healthcare systems or signposting overseas. If you are based in another country you can WhatsApp message us, whatsapp call, email, or video call us. Please only use these methods if based outside of the UK, as we cannot receive or make calls to international numbers.

Confidentiality

  • All calls are confidential within FSUK. FSUK helpline users are encouraged to take responsibility for themselves and get help from emergency services when needed. Confidentiality will only be broken in exceptional circumstances, and without the consent of the caller, if the helpline adviser understands:

 

  • that the caller is actively suicidal, has a plan and is enacting it now. 

 

  • that an act of self-harm has become life threatening.

 

  • that the caller has seriously harmed a third party or put their life in danger. 

 

  • that the caller informs the helpline about an impending act of terrorism. 

 

  • that the helpline is obliged to give information to Police or other authorities who have the power to demand this i.e on receipt of court order. 

 

  • that the caller has threatened the safety of an FSUK employee, trustee or volunteer, or the safety of our service. 

Safeguarding

  • FSUK is committed to the wellbeing and safeguarding its clients, staff and volunteers, and is determined to ensure all necessary steps are taken to protect vulnerable adults from harm.
  • FSUK will: 

 

  • Establish and maintain an environment where everyone can feel safe, talk freely about their feelings and experiences, and are listened to.
  • Take effective, timely and robust action to protect anyone at risk of harm and report concerns according to the procedures outlined in our policies.
  • Deliver our work in a way which minimises risk, promotes welfare, and values the needs and involvement of people – particularly people living with Fowler’s Syndrome

Respecting each other

  • It is important that the people who speak to us, and our colleagues on the FSUK support line, feel safe. We believe everyone has a right to be treated with fairness and respect. Below outlines unacceptable or unreasonable behaviour when using the FSUK helpline: 

 

  • We won’t accept aggressive behaviour while helping you. For example shouting, swearing, abuse, any form of discrimination, violence, racism or homophobia. 
  • We cannot accept calls when people are driving, even on hands free. 
  • We will tell you if you are taking up an unfair amount of time as this could stop us helping other people. For example if you repeatedly contact us which is outside of the helpline remit, or is something that we cannot help more with. 
  • Asking to speak to a specific helpline adviser, employee or volunteer
  • Sending us unsolicited photographs or attachments via email or text chats. 

Call recording and monitoring

  • Calls to FSUK are confidential but may be recorded and monitored for quality and training purposes 

Call charges

  • Calls to FSUK’s helpline are free of charge. If internationally based you must call via Whatsapp. 

FSUK peer support team

  • If you’d like to join our peer support team as a mentor then please email Rachel on rachel@fowlerssyndrome.co.uk or text 07432 424 666. There will be some brilliant resources and support available for our peer support mentors.
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We know that:

⁃ 75% of women with Fowler’s have been told the condition is all in their heads
⁃ 85% said the condition had a severe or devastating effect on their life
⁃ Only 55% have been offered psychological support.
⁃ Only 30% of GPs are aware of the condition and a majority urologists only have basic knowledge
⁃ 46% of women from our survey did not feel supported by their doctor
⁃ 96% experienced stigma from medics, family or friends