Dr JO Menakaya MA MRCP, Consultant Paediatrician Clinical Lead, The PURA Project, Hillingdon Hospital Middlesex, UK
Dr Menakaya, Consultant Paediatrician at the Hillingdon Hospital in Middlesex, discusses his newest project which focuses on the management of bowel conditions in children, and how we can ‘keep it fun’.
Included in this write up is some fabulous feedback from the mother of a little boy who uses the Qufora IrriSedo MiniGo Flex to irrigate his bowels on a daily basis.
We love hearing about how the Qufora IrriSedo MiniGo Flex is helping people of all ages to live a more fulfilled life and we are glad that we can share the story of this fabulous little boy with you.
‘He is brilliant with it’. His mother said. ‘He helps me run the water until it is the right temperature and then reminds me to click the pouch shut properly. He makes sure that I attach the flexible tube with cone to the pouch securely and flush it so there is no air in the circuit. The only thing that I do is support him with the cone. When he is ready, he squeezes the MiniGo pouch and once the water runs through, he sorts himself out. No fuss. No mess’.
This is the experience of an eight-year-old child and his mother whose life has been transformed a few days after highly skilled training and continuing support managing constipation and encopresis. In the last six months we have been running a pioneering Quality Improvement Project focusing on the management of this condition in children. We offer these children more than thirty different interventions (including trans-anal irrigation) within a multi-disciplinary care framework to resolve this symptom.
As the project continues, we are learning the key ingredients for a successful outcome in the management of this distressing condition in children. These are proactive, committed and engaged carers – parents, teachers, and other key adults around the child, consistent toileting routine, partnership with the child no matter how young, and……… Keep It Fun!
‘Can you show him bum twinkle? His mum asks him. His physiotherapist has recommended a series of daily pelvic floor exercises. He begins a sequence of complex abdominal wall muscle movements that have me rolling on the floor in fits of laughter. His face beams with a wide smile.
I know he can see the light at the end of the tunnel.
Marie Watson, Lead Spinal Urology Nurse Specialist, Princess Royal Spinal Cord Injuries Centre, Sheffield Teaching Hospitals NHS Foundation Trust
“I am the lead urology specialist nurse working at The Princess Royal Spinal Injuries Centre, I manage patients with complex urological needs, and in addition a large proportion of my role includes seeing spinal injuries patients with neurogenic bowel dysfunction. I inform and teach patients how to perform bowel management strategies in order to improve their quality of life and some of these management options include Transanal irrigation.
Transanal irrigation has had such a positive impact and influence on many of my spinal patients and I as a clinician would be lost without it as an option to offer to my patients. It’s also extremely helpful to have such informative leaflets and online resources to point patients to in order to keep the patient well informed of the choices available.
Many spinal patients would say that the most life changing aspects of having a spinal cord injury are the effects it has on the bladder, bowel and sexual function, this in turn confirms how crucial my role within the centre is, as I discuss and offer management options for these specific, specialist areas of care.”
Marie Watson Lead Urology Nurse Specialist Princess Royal Spinal Cord Injuries Centre Sheffield Teaching Hospitals NHS Foundation Trust
It pleases me immensely to see that healthcare professionals (HCPs) continue to be passionate about managing symptoms of low anterior resection syndrome (LARS), which has an enormous impact on quality of life. Last week I had the privilege of attending the virtual LARS Masterclass run by Jennie Burch (Head of GI Nursing education, St Marks Hospital) and Claire Taylor (Macmillan Nurse Consultant, St Marks Hospital). A superb masterclass that enhanced knowledge about the consequences for patients following surgery for rectal cancer.
Alongside organising virtual masterclasses Jennie and colleagues have been busy publishing an article “Managing bowel symptoms after sphincter-saving rectal cancer surgery: a scoping review”, which illustrates for the many bowel symptoms that occur, numerous therapies emerge. Leading to the conclusion that to effectively manage the bowel symptoms of LARS more than one treatment option may need to be used simultaneously.
An interesting read that has made me think a little more about research in this bowel disorder. With the complexity of being able to specify that no one treatment will fit all, perhaps the focus may lend itself to devising the best clinical pathway.
Constipation is often under-recognised as an important health issue. For that reason, many patients do not seek early treatment and as a result symptoms worsen over time.
The Bowel Interest Group (BIG) for some time has been raising awareness around constipation and the scale to which it has now become a serious problem with emergency admissions to hospital rising year on year. Carlene Igbedioh an integrated continence advanced nurse practitioner, at St Thomas’ Hospital, London, in her published article ‘Constipation: How can nurses help to reduce the scale of the problem?’ draws upon the key findings from the BIG report including communication, managing high risk patients, laxative use and dedicated services. Carlene highlights how better treatment pathways are necessary and now is the time for the NHS to review and improve service requirements.
Constipation can have an impact on an individual either physically, psychologically or with social wellbeing. Perhaps as Kyle (2010) recommended 11 years ago, constipation should be considered as a condition in its own right rather than seen as a symptom or set of symptoms.
References Igbedioh C, ‘Constipation: how can nurses help to reduce the scale of the problem?’, Nursing Times [online], 2021, vol. 117, no. 5, pp. 53-54. Kyle G, ‘The older person: management constipation’, Brit J Community Nursing, 2010, vol. 15, no. 2, pp. 58-64.
Dr JO Menakaya MA MRCP, Consultant Paediatrician Clinical Lead, The PURA Project, Hillingdon Hospital Middlesex, UK
Constipation if inadequately treated in paediatrics can result in long term difficulties often extending to adult life. The longer it takes for constipation to be treated, the worse the prognosis. In severe cases, faecal incontinence (encopresis) may be present.
Constipation and encopresis straddle the void between emotional wellbeing and physical health. A constipated child suffers a physical illness that impacts on his emotional health. His emotional wellbeing has a direct impact on whether this symptom gets better. We have pioneered an approach that addresses these issues simultaneously.
In our PURA service, children receive care from a multi-disciplinary team working simultaneously towards achieving a rapid return to optimum mental and physical wellbeing. In addition, some of these children following careful assessment are offered Trans Anal Irrigation. This service has enabled up to 75% of children with intractable constipation to improve within 1 year of referral. Our aim is to achieve this outcome within six months of referral. This attitude has improved the daily experiences of many children who have been referred to our service.
We are currently undertaking a quality improvement project to understand what best practice is for managing children with intractable constipation and encopresis. Working closely with children and their carers, this fresh approach will transform the care our affected patients receive.
Research is an integral part of any healthcare environment yielding enrichment of clinical management and generating continual learning and development. A concept that has been employed for many years by Professor Rosen of the Sigmund Freud University in Vienna, with a particular interest in management of low anterior resection syndrome (LARS).
His recent publication “Prophylactic” transanal irrigation (TAI) to prevent symptoms of low anterior resection syndrome (LARS) after rectal resection: results at 12-month follow-up of a controlled randomized multicenter trial” is a follow up to his published work of a randomised controlled trial (RCT) in 2019. The 12 month follow up indicates that TAI can reduce defaecation episodes during the day and night as well as decrease the LARS score. However, despite showing beneficial effects the research raises several questions that will require future trials. Nevertheless, Professor Rosen and his team recognise that the result of the initial randomised controlled trial in 2019 suggests that patients must be informed preoperatively about the possibility of LARS as well as the chance to influence symptoms with TAI. A model introduced and published by Deborah Sumner from Watford Hospital in September 2019.
Great to see that LARS remains on the research map, which can only facilitate and support future treatment options as well as improve of quality of life.
Deborah Sumner, Colorectal Specialist Nurse, Colorectal Multidisciplinary Team at West Hertfordshire NHS Trust
Lower Anterior Resection Syndrome refers to a myriad of bowel control issues for many patients who have Anterior Resection Surgery with a temporary ileostomy, after that ileostomy is reversed.
Like many Trusts around the country, there was a lack of advice and support for patients who found themselves trying to manage these issues. Sadly, social media tends to highlight the horror stories of bowel dysfunction and also the lack of support available countrywide.
The impact on patient’s day to day life is huge and the lack of support we were able to offer felt like a failure of service provision that clearly needed to be addressed. However, many of the usual approaches at that time were conservative, so provided management advice only, rather than attempting to prevent issues before they occurred.
The Watford LARS Pathway is a new approach to managing LARS; providing a pro-active approach, involving the patient ahead of reversal surgery, using the Qufora MiniGo system to help train the bowel to retain its contents using a small volume of water instilled into the bowel on a daily basis. This gives patients the ability to defer opening their bowels post reversal surgery. Outcomes for these patients have been greatly improved with many finding their bowel control after reversal surgery exceeds their expectations.
The availability of a specialist nurse who can support them and is available to them on the telephone and also in a clinic setting receives great feedback with many patients saying that having someone to talk to is also of great benefit to them.
Teddy Fletcher, General and Colorectal Surgical Registrar andClinic Research Fellow at Imperial College London
The traditional abdominal perineal resection (APR) with a permanent end colostomy has been superseded by increasingly low sphincter preserving anterior resections. However, these advancements have come with functional consequences: up to 80% of patients undergoing low anterior resection (LAR) will develop a significant degree of bowel dysfunction following their surgery, which persists for up to 15 years post-surgery in 50% of patients.
The above-described incidence of LARS and consequential negative impact on patient QoL means its management must be prioritised and streamlined. Whilst there has been a significant amount of research into its optimal management, there is, to date, no gold standard. As such, the majority of colorectal centres offer no or, at best, ad-hoc treatment for LARS. These patients often return to a conventional outpatient colorectal clinic where management is variable, time consuming and often ineffective. The obstacle to increasingly low resections, therefore, is not oncological clearance, but functional outcome. We therefore hypothesised that a specialised clinic is both an innovative and logical progression in the management of LARS.
In July 2018, WHHT, in collaboration with MacGregor Healthcare, set up a holistic specialised nurse-led LARS clinic with the aim of managing LARS. As far as the authors are aware, WHHT is the only colorectal cancer centre in the United Kingdom to run a dedicated LARS clinic for the management of this syndrome. Following a formal assessment of the clinic (pending publication) we have demonstrated that there is high satisfaction with our LARS clinic, and that patients attending the clinic have lower LARS score and less major LARS than has been previously reported in the literature.
‘The Watford LARS Pathway’ was created in cooperation with Vanash Patel, Consultant Colorectal Surgeon at West Hertfordshire Hospitals NHS Trust (Watford, St Albans and Hemel Hempstead Hospitals), who was the supervising consultant for this project.