Breaking the bladder taboo and pressing for progress

Professor Roger Feneley’s legacy

Bladder problems affect 14 million people of all genders and ages in the UK. Amongst the most affected are the elderly and the disabled. A new campaign, inspired by Professor Roger Feneley’s legacy, is calling for major reform: in raising awareness for urinary health issues, and encouraging the development of new catheter devices.

By Rute Costa

Bladder problems affect 14 million people of all genders and ages in the UK. Amongst the most affected are the elderly and the disabled. Even though numbers prove this is a condition present in the lives of many, very few feel like they can talk about it. Patients often see incontinence as degrading and humiliating, and the NHS, catheter providers and medical device regulators devote insufficient attention and resources to it. A new campaign, inspired by Professor Roger Feneley’s legacy, is calling for major reform: in raising awareness for urinary health issues, and encouraging the development of new catheter devices.

Professor Roger Feneley was an eminent urologist who fought long and hard to break down the taboos surrounding continence care, and to improve the treatments and devices available to the many affected by incontinence. His accomplishments are commendable and irrefutable: he was a pioneer in urodynamics, a key player in the founding of the Association for Continence Advice, the main force in setting up the first Healthcare Technology Co-operative (the Biomed Centre in Bristol), and a tireless physician –  dedicated to all the patients who were lucky to cross his path.

“[The device] can cause bacterial colonization, recurrent and chronic infections, bladder stones and septicaemia, damage to the kidneys, the bladder and the urethra, and contribute to the development of antibiotic resistance.”

Prof Feneley’s unceasing focus was on finding alternatives to the Foley catheter, the only indwelling catheter available to patients – mainly the elderly and the disabled – for whom the safest type of catheterisation, “clean intermittent self-catheterization”, is not an option. Writing in The Times in 2011, Prof Feneley calls it “baffling” that such patients “must still use a device largely unchanged in its design since the 1930s”. The device, he explained further in a scientific paper, “can cause bacterial colonization, recurrent and chronic infections, bladder stones and septicaemia, damage to the kidneys, the bladder and the urethra, and contribute to the development of antibiotic resistance”.

Prof Feneley saw the development of new catheters as an “urgent unmet medical need” and campaigned extensively for it. Alongside his tenacious team (Dr Ian Hopley and the late Prof Peter Wells), he set up Alternative Urinary Catheter Systems Ltd. (AUCS) and spent years of his life researching and developing new indwelling devices.

However, substantial obstacles kept this team from driving their alternatives to commercialisation; mainly a lack of awareness and of funds. In May of this year, Prof Feneley himself emailed me about the urgent necessity to break the taboos and join multidisciplinary efforts to improve the devices available to patients with urinary incontinence: “This is a subject that people do not like to discuss and this forms a barrier to progress that must be broken. Strength in numbers would be invaluable”. His unexpected death on the 6th of June sparked a new movement: a group of patients, carers, researchers and physicians determined to carry on with the necessary work he so ardently pursued.

At the forefront of this newly-energised campaign for reform is Jacq Emkes, patient advocate and the only catheter-user sitting on the board of NHS England’s Excellence in Continence Care group (EICC), with a strong desire to “break the taboos”. She works on a voluntary basis to provide practical guidance for health and social care staff on how to best help incontinent patients. Besides speaking with and listening to health care professionals, informing patients on the best routes of care and raising awareness of the variety of disposable catheters available to them, Jacq reinforces the need for a new Foley for those who are unable to self-catheterise, and need a long-term solution.

“This is a subject that people do not like to discuss and this forms a barrier to progress that must be broken. Strength in numbers would be invaluable.”

NHS England’s EICC recent guidelines reveal that “urinary tract infections are the most common healthcare acquired infection (HCAI), comprising 19% of all HCAIs; 43-56% of UTIs are associated with urethral catheters [i.e. the Foley]; approximately 17% of secondary nosocomial bloodstream infections are caused by catheter use, with an associated mortality of 10%.” Dr Nicola Irwin, lecturer in Pharmaceutical Materials Science at Queen’s University Belfast, shines further light on this: “Bacteria readily attach to the surfaces of these devices, and approximately 50% of patients who use [indwelling] urinary catheters on a long-term basis experience recurrent episodes of infections and blockages. These are very difficult to treat and can lead to kidney and bloodstream infections if not detected in time.  Removal of infected catheters can also be a very painful process and damage the surrounding tissue. This has corresponding negative impacts on the quality of life, health and well-being of catheter users”.

Claire Peppiatt, previously a carer for her late husband and now an active member of the campaign, remembers “how he suffered as a result of needing a long-term catheter, beginning with the initial procedure of having it put in. […] the whole procedure was horrendous, unnecessarily humiliating, extremely painful, and very frightening, both for him, and for me, who witnessed it. […] This was followed by three months of further suffering before he died, with recurrent infections due to blockages, emergency calls to 111 or to the wonderful district nurses,  who invariably responded to my desperate pleas for help, usually in the middle of the night”.

Prof Feneley often pointed to the serious issue of widening antibiotic resistance associated with recurrent catheter-induced infections. Melanie Reid, journalist for The Times, catheter user, and prolific advocate for reform, frequently expresses similar concerns about antibiotic resistance, claiming to be down to “the last lines of defence in bladder bugs” and “running out of options”. In these instances, the consequences for the patients are irreversible.

Catheter-associated urinary tract infections (CAUTI) place a huge financial burden on the NHS, an estimated to cost ‘up to £99m p.a., or £1,968 per episode’.”

Not only that, but catheter-associated urinary tract infections (CAUTI) place a huge financial burden on the NHS, an estimated to cost “up to £99m p.a., or £1,968 per episode”. Hospital Episode Statistics report that, since 2003, the number of serious adverse incidents of UTIs associated with catheterisation is 1.9 million. So, given the scale of the problem, why is the medical establishment neglecting the need, or, at least, not actively encouraging the development of an alternative to the Foley?

“The status quo is that Foley catheter manufacturers have little incentive in changing a device that has a massive, global, profitable market, while latterly cash flow has meant that the large medical device companies have significantly reduced their R&D capabilities”, says Sam Martin, biomedical scientist and managing director of AUCS Ltd. High demand for the Foley, alongside a lack of funds for innovation and improvement makes the current indwelling catheter “easy money”, emphasised Professor of Continence Technology at Southampton University, Mandy Fader, in a 2015 Radio 4 interview. It seems the scenario has not changed much since.

Behind the scenes, researchers like Prof Feneley have been tirelessly working on indwelling alternatives that reduce the risk of infection and improve the wellbeing of the patient. “The vision is to produce a set of devices that can be used in various combinations to build a system that suits the individual patient. To that end, Roger, Peter and Ian designed several concepts of which the first two are at various stages of being protected by patent”, explains Sam Martin. In parallel, Dr Nicola Irwin’s team in Belfast “are developing multifunctional coatings for catheter surfaces to prevent common issues of infection, tissue damage, and catheter blockages”. But these products have a long journey to go until commercialisation.

An overarching issue seems to be the absence of productive dialogue between patients, carers, clinicians, researchers, medical institutions, the catheter device industry and funding bodies. Despite efforts by the NHS to increase awareness in continence care, many patients and clinicians still lack important knowledge about catheter alternatives, and the Foley remains the first port of call, even in cases when it could be avoided. Despite clear evidence of the health consequences of an old-fashioned catheter, and the huge financial burden it places on the NHS, device regulators are not inciting change, and research into alternatives is insufficiently encouraged. Despite alternatives being developed by researchers and academics, a lack of funds, extensive bureaucracy and the inexistence of straight-forward communication routes to commercialisation are freezing progress.

“It’s such an incredibly slow process and it’s the dialogue between all the different people that is really important”, Jacq Emkes tells me. “More support for collaborations between industry and academia would help to get this research from the laboratory to the marketplace and into the clinic to ultimately benefit patients”, says Dr Irwin. In his correspondence with me, Prof Feneley called for “interdisciplinary collaboration and discussion”, and highlighted the crucial need for dialogue with investment bodies “we need some substantial [commercial] funding to support this interdisciplinary project”.

Prof Roger Feneley’s sad passing has been, in Jacq’s words, a “catalyst” – it has “gathered momentum” to continue a necessary campaign to improve the lives of many. Dialogue between patients, carers, researchers and physicians is intensifying, and their mission to raise awareness is taking flight. This movement advocating for awareness, collaboration and action is paving the way, perhaps, to the eminent urologist’s ultimate vision. Says Sam Martin: “Roger often talked about the need for a Centre for Clinical Excellence. Prof Mandy Fader kindly offered to head up a UK Centre, and various NHS, University Hospital Urology departments have expressed an interest in participating. We would like it to be called The Feneley Centre”.