Co-creation with stakeholders in information production is key to high-quality patient-centred care
RCSEd Communications Team
his year's theme for the World Health Organization's World Patient Safety Day (17 September) is Engaging Patients For Patient Safety, in recognition of the crucial role patients, families and caregivers play in the safety of health care. Active patient involvement, both in their own personal care as well as at a strategic organisational level, is vital to help improve healthcare provision, and the RCSEd is delighted to support this year's WPSD theme.
The RCSEd Patient Safety Group have produced a number of blogs as part of a campaign to mark World Patient Safety Day. In this blog Chelliah R Selvasekar covers why the co-creation with stakeholders in information production is key to high-quality patient-centred care.
Vanessa Denvir, Patient representative, Colorectal Pathway Board, Greater Manchester Cancer
Rachel Allen, Colorectal Pathway Board Manchester, Greater Manchester Cancer
Selvasekar, Vice Chair, Colorectal Pathway Board, Greater Manchester Cancer
It's common for colorectal issues to require surgery, which can sometimes lead to temporary or permanent stomas. According to Colostomy UK, there are between 165,000 to 200,000 individuals in the UK living with a stoma, and around 21,000 people undergo stoma formation each year. Stoma care nurses are there to support these patients during and after their surgery, and they are available to help patients even after they leave the hospital. There are also third-sector support options available in the community for individuals with stomas(Colostomy UK., 2023).
Stoma care nurses offer ongoing assistance to individuals with stomas, addressing a range of concerns such as pouch leakage, social engagement, and body image issues (Malik, Lee and Harikrishnan, 2018). These challenges may emerge immediately after surgery or at a later point in the patient's life. While some ostomates encounter these difficulties temporarily, they can persist for others over the long term(Burch, 2014). The United Kingdom allocates more than £260 million each year to stoma products. Costs associated with stoma appliances and accessories in primary care can vary from £780 to £2,300 per patient each year, and in some cases exceed £6,000 (Colostomy UK., 2023).
While there is an increased awareness of stomas in the UK population, it is still a difficult decision for individual patients, and the consequences are not always appreciated. Although there is good support available, there is a need for locally driven patient support groups to address the needs of various ethnic groups in stoma care.
Patient X helps improve cancer services for people in Greater Manchester by sharing her experiences. Patient X shares her insight:
As someone with no prior experience or knowledge of stomas, being told it was the best-considered outcome to save my life was complex information to accept. Acceptance, despite the fear, was the start of the process.
Fear of the unknown how to live and navigate life with social stigmas blurring the view presented themselves in conversations with the surgeon and nurses (colorectal and stoma) about what I might not do and how I would struggle to cope almost made me more determined to prove them wrong.
I am being advised that surgery for a stoma, whatever the condition or trauma, is naturally anxiety-provoking for anyone. There is the condition, surgery, and recovery to accept and go through, and how to manage living life beyond.
Typically, it was considered something an older person would live with and was perhaps the only known, if any knowledge, of someone living with a stoma.
A plethora of literature was available, but reading and engaging with it was overwhelming in the early stages of recovery. Over time, reading about other’s experiences, tips and techniques and what additional support was available helped me to process how I might live with a stoma.
Meeting a patient representative through the hospital nursing team helped me understand my surgical recovery benchmarks. It’s important not to make comparisons but to recognise the personal milestones reached and how they are achievable.
Attending the first hospital open day was empowering, from walking into a room where everyone understood what you were experiencing without explaining it to seeing the products and accessories researched and manufactured to support a patient’s lifestyle and needs. Meeting other ostomates from all walks of life, hearing their experiences and the wide variety of reasons why stomas are formed opened up a world of understanding and empathy.
As an ostomate due to cancer, accessing support through the local hospice day care centre was of great value. Massage therapies, talking therapy and the opportunistic meeting with the physiotherapist to advise on basic physio exercises all helped to relax and straighten out the protective stooped posture and thought processes that had been adopted. This was personally resourced, recognising the need for supported activity to engage with the outside world. In more recent times, Holistic Needs Assessments offer the opportunity for some cancer patients specifically to access the additional support they may need. However, there is an unequal spread of this service.
Volunteering with third-sector organisations, alongside clinical professionals, medical companies and other ostomates, is how I came to understand better and learn to overcome some of the challenges I experienced. How to adapt to new circumstances, whether they be practical, emotional, psychological or spiritual, is unique to each individual and can change at any point in their lifetime, whatever their age or circumstances. Through compassion, empathy, humour, tears, silence, and prompts can open up to share their stories and hopefully find the answers and acceptance of their circumstances. Knowing what support is available is helpful and invaluable in managing their needs and is gratefully appreciated.
Although it is recommended that temporary stomas are closed within 18 months, National bowel cancer audit showed nearly 50% of the stomas are not closed within the recommended period (Vaughan-Shaw et al., 2018). However, many patients face challenges that prevent the reversal from happening due to challenges in theatre capacity and some instances, due to ongoing treatment. This can negatively impact their physical, mental, and psychological well-being and body image. To improve the quality of life for patients, timely reversal of temporary stomas is crucial. Including a reversal timeline in a patient's cancer pathway leads to better outcomes and fewer complications for the patient and the surgical team. On the other hand, there are some patients who prefer to keep their stomas as they find it easy to manage when they have had issues with continence previously, which can make post-cancer surgery monitoring difficult. Educating patients about their options before surgery may help to reduce the number of non-reversals due to patient preference.
Patient X continues:
As an ostomate of 18 years, finding the response to having a stoma is less a blushed look or repulsion to seeing they know someone who has one also. Engaging in the conversation of what’s challenging is less that no one wants to talk about it and more about how people cope and manage. For anyone, the news of hearing that a stoma is a medical necessity is still tricky, but how society responds to it is improving. Improving the journey and providing support will always be needed.
Going through the processes of diagnosis, surgery, and recovery are still challenging to people. Still, the impact of stoma stigma is reducing with more people aware and less fearful of having to have one, especially in the world of Inflammatory Disease.
Active patient engagement is central to service improvements, particularly in optimising care.
References:
Colostomy UK., 2023. Colostomy UK - A UK charity supporting people with a stoma [online]. [online]. Available from: https://www.colostomyuk.org/ [Accessed 31 Aug 2023].
BURCH, J., 2014. Stoma care in the community. British journal of community nursing. 19 (8), pp. 396, 398, 400.
MALIK, T., LEE, M.J., and HARIKRISHNAN, A.B., 2018. The incidence of stoma related morbidity - a systematic review of randomised controlled trials. Annals of the Royal College of Surgeons of England. 100 (7), pp. 501–508.
VAUGHAN-SHAW, P.G., GASH, K., ADAMS, K., VALLANCE, A.E., PILKINGTON, S.A., TORKINGTON, J., and CORNISH, J.A., 2018. Protocol for a multicentre, dual prospective and retrospective cohort study investigating timing of ileostomy closure after anterior resection for rectal cancer: The CLOSurE of Ileostomy Timing (CLOSE-IT) study. BMJ open. 8 (10), p. e023305.
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