Bladder Health UK: Living positively with bladder illness

Women talking: Bladder health

Susannah Fraser is Communication and Media Manager at Bladder Health UK. Bladder Health UK is working with the public, healthcare professionals and industry to offer expert advice on bladder conditions. Susannah Fraser shares more about the charity’s work.

What is Bladder Health UK?

Bladder Health UK is a national, patient-based charity giving support to sufferers of all forms of chronic bladder illness, together with their families and friends. We have a wealth of resources aimed at supporting not only patients but also healthcare professionals and researchers. At the head of our charity is our Advice Line offering confidential help and advice to those who sometimes have nowhere else to turn.

“The majority of continence issues can be improved, if not completely resolved, with intervention”

What are your aims?

We aim for a future free from the pain, stigma and isolation of bladder illness by ensuring people with bladder health issues can expect a consistent level of healthcare, support and treatment. We encourage research into new treatments and personal management strategies, and also work proactively with other like-minded organisation and charities to raise the profile of bladder illness issues. We are a trustworthy source of information and advice on the most up-to-date and available treatment options and we aim to give our members the confidence to make the right choices for them and their bladder health.

What do you do and how do you do it?

We provide a pack of resources for members including a handbook on their condition, a diet booklet and a recipe book. We distribute a membership magazine three times a year which is full of articles and information on living positively with bladder illness. We also have a wide range of factsheets on bladder illness and the various treatments available.

We lend a listening ear to sufferers in the form of our Advice Line, which is open weekdays and takes calls from members and non-members alike. It offers advice on treatments and emotional support when it is needed. The line is manned during the week by a recently retired urogynaecology nurse, and an expert patient. Once a fortnight we have a specialist bladder and bowel nurse on the line for those who would like some help with their bowel issues alongside their bladder.

We have a network of support groups throughout the UK where sufferers can speak to each other face-to-face and offer tips and support to one another. Twice a year, we aim to organise a workshop where members can come and learn about chronic bladder illness from practitioners and therapists who are skilled at treating those who suffer.

For people who prefer to have contact with others in a more anonymous way, we have message board forums on our website where sufferers can post and receive support from other sufferers. Our social media pages on Twitter, Facebook and Instagram are buzzing with traffic and posts to interest both sufferer and healthcare professionals alike.

For healthcare professionals, we have recently begun to offer study days, where they can learn about bladder illness from practitioners and network with one another.

Do you conduct research?

Where funding will allow, we support research projects into bladder illness which we hope will lead to better understanding and improved treatments for sufferers in the future.

In 2011, we offered a research grant into Interstitial Cystitis and funded a team of researchers at Newcastle University who investigated the link between antimicrobial peptides and bladder pain.

What support do you give the general public and healthcare professionals?

For sufferers we provide:

  • A confidential advice line.
  • A network of support groups throughout the UK run by volunteers.
  • Regional patient seminars.
  • Over 80 factsheets together with handbooks and leaflets.
  • Annual membership.
  • An information pack for new members, including a recipe book, diet information and a handbook on their condition.
  • A membership magazine containing articles on the latest treatments and research written by professionals.
  • Active social media sites on Facebook, Twitter and Instagram.
  • The largest bladder related online message board forums in Europe, also available for resource searches.

For healthcare professionals we provide:

  • A database search facility to invite hundreds of patients to take part in research projects/surveys.
  • Support and funding for bladder research.
  • Website information with links to other support groups.
  • Patient support and help with group meetings throughout the UK.
  • A free information pack with leaflets and posters for urology clinics and hospital/surgery notice boards.
  • Support for their patients and families.

Do you work with the pharmaceutical industry?

We regularly work with corporate partners who manufacture or distribute products for those who suffer from chronic bladder illness, to keep our members informed of the latest treatments and products available. We are also grateful for the financial sponsorship we receive from our corporate partners which allows us to provide our diverse range of services.

Tell us about the bladder campaign you recently ran with P&G?

We were delighted to be invited to run a campaign with P&G on breaking down the taboo associated with continence issues, entitled ‘Wee Need to Talk’. We set up a call centre and encouraged women to call us to receive appropriate advice and information on continence issues and not to be embarrassed to speak to healthcare professionals and ask for this support. The majority of continence issues can be improved, if not completely resolved, with intervention and we welcome the opportunity to convey that message to sufferers.

What support would you like from industry?

The pharmaceutical companies that we work with produce treatments for chronic bladder illness. It is important that we are aware of both existing and new medications, and we have established good working relationships with the relevant organisations. The relationships are based on a corporate sponsorship package that provides unrestricted funds essential for the continuity of the charity and the work we do. We are a valuable two-way conduit between industry and the patients.

Go to www.bladderhealthuk.org