The voice of ostomates: an exploration of stoma care in England

Stoma surgery is mainly performed to treat cancer, inflammatory bowel disease or to resolve other obstructive symptoms or diseases of the bowel or bladder. A stoma is a surgically created opening on the abdomen that diverts waste products (faeces or urine) from the body, and may be permanent or temporary. A stoma appliance (also known as a pouch) is placed over the stoma and adheres to the skin to collect the waste. Additional products such as stoma seals may be required to ensure adherence of the appliance or to manage a peristomal skin complication.

Burch (2021) states that there are 1 in 335 people in the UK with a stoma. Based on a population in England of 56 million (Office for National Statistics, 2022) the authors estimate that there are approximately 167 000 ostomates in England.

NHS Supply Chain is a commonly used route for the supply of medical devices for all therapy areas in NHS hospitals. Recent changes to the NHS Supply Chain model for NHS procurement were introduced under the Department of Health (DH) Procurement Transformation Programme (DH, 2017). The Collaborative Procurement Partnership (CPP) is the service provider for rehabilitation, disabled services, women's health and associated consumables within the NHS Supply Chain model: it is responsible for the procurement of products in several therapy areas, one of which is stoma care. Within CPP, clinical teams use their clinical knowledge and engage with clinicians, end users and suppliers to provide clinical assurance that products and, in some cases, services ‘deliver the highest patient safety standards, while meeting the specification requirements of clinicians to support them in carrying out their jobs efficiently’ (CPP, 2021). In 2019, the team at CPP undertook significant stakeholder engagement with clinicians, end users and suppliers to better understand stoma care services and product requirements. Ostomates were invited to participate in an online survey, in order to provide insight into their perspectives.

There were 2504 responses to the survey in total, however, not all questions were mandatory, therefore there were varied numbers of respondents for each question. The high level of response has led the authors to publish the results to ensure that the voices of ostomates are heard, in part repaying the investment of time and consideration given by respondents. This article provides an overview of the survey results, concluding with a brief discussion around the key themes identified from the patient experience questions. These covered a range of issues, including:

• Visits from the stoma care nurse (SCN)
• Physical care
• Psychological care
• Information sharing
• Specialist knowledge
• Products.

Methods

The survey was developed by the authors and focused on ostomates with a colostomy, ileostomy or urostomy. The purpose was to capture the lived experiences and views of ostomates about the stoma service they had received in hospital and at home. Ostomates aged 18 years or over living in England were invited to participate. Parents and/or carers were requested to complete the survey on behalf of those aged under 18 years.

The survey was hosted on an online platform and participation was voluntary, and was available for ostomates to access between 7 January and 3 March 2020. It was promoted through national and local patient associations and support groups, the Clinical Procurement Specialist Network, the Patient Industry Professionals Forum, NHS Supply Chain social media accounts and CPP social media accounts. Paper surveys were made available, on request, to patients who did not have internet access, and their responses were added manually to the online survey. All information collected was managed in accordance with the General Data Protection Regulations under the Data Protection Act 2018.

The surveys contained 41 questions with a combination of open and closed questions, some with additional free text options. The questions were developed following extensive stakeholder engagement with clinicians, ostomates and industry representatives undertaken in 2019. The questionnaire aimed to elicit the following:

• Demographic information: age, time with a stoma, stoma type, geographical location
• Interactions with the SCN: did the ostomate have a stoma nurse or knew who their local contact was; level of satisfaction with care received after surgery and on discharge home; did the ostomate have an annual review; did they access a support group
• Stoma products and delivery service: method of supplies delivery, including sample products; choice/no choice in relation to supply route and products. A number of audit questions were related to dispensing services: this is not being reported in this article, because the information gained does not add to the voice of the ostomate
• Personal experience: open questions invited free-text responses about what went well and what could be improved in terms of both hospital-based care and home-based care.

The full survey is not reported in this article due to publication constraints, but can be requested from the authors.

Analysis of the personal experience section of free-text responses used thematic coding and analysis to elicit meaningful themes and subthemes. The analysis and the identification of themes were undertaken by three team members, both independently and then jointly to discuss and align findings. Team members with clinical nursing backgrounds in the acute, community and specialist stoma care sectors were involved. This ensured investigator triangulation (Denzin, 2017) to mitigate bias and provide a consistent approach to exploring and verifying themes. The goal of thematic coding and analysis was to identify similarities and enable interpretation of the rich and thick data (Nowell et al, 2017). Quotes derived from the survey data have been used verbatim to illustrate the themes and respondents' experiences.

Results

Demographic information

The survey included gathering information on age, geographical location, stoma type, whether the stoma was temporary or permanent, whether the ostomate had had planned or emergency surgery, and how long they had lived with the stoma. The results are presented in Figure 1 (a–d) and Table 1.

Most ostomates were aged over 56 years (76%; 1901), with only 14 respondents being aged 18 years or under. There was representation from all NHS England regions. Most respondents (93%; 2298 of the 2491 who answered the question) had a permanent stoma, with 71% (1768/2497) having the stoma as a planned operation. Most had a colostomy; the length of time an individual had lived with a stoma varied, although over half had had it for more than 6 years.

Interactions with the stoma care nurse

Questions relating to the clinical pathway and contact with the SCN included frequency of contact, continuity of care from the same nurse, and the patient experience of the support received during both the hospital stay and at home. Patients were also asked if they received a regular review and had access to patient support groups.

The findings showed that:

• 82% (2048/2500) of respondents know their SCN and their stoma team
• 45% (1117/2461) of respondents reported that the same SCN/team provided care at home as had provided it in hospital.

There was a broadly equal split between ostomates who wanted continuity of care because they felt it helped to build a rapport with an SCN who knew their medical history and ostomates who did not think this mattered, as long as the nurse was suitably qualified.

Patient experiences of care were generally positive for care in hospital and at home, with 84% reporting good positive experiences of the support provided by their SCN in hospital (57% (1410/2462) excellent and 27% (664/2462) good), and 74% of patients felt that they were supported well when they were home (47% (1144/2458) excellent and 27%(674/2458) good).

Only 21% (537/2488) of respondents indicated attending a support group, locally or regionally, and 14% (340/2488) reported being unaware of any support groups. Those who reported attending patient support group accessed local, regional and national groups.

To the question about the frequency of contact with an SCN, over half (1204/2445) responded that they only saw the SCN when they had a problem. However, 17% (397/2445) responded that they did not see an SCN, but it is unclear if this is because they did not need to or because they did not know who they should contact. Furthermore, when asked about receiving an annual review, 32% (799/2500) said they did receive an annual review. The question did not make a distinction between a clinical review and an appliance user review, the latter of which are performed in some areas by dispensing appliance contractors (DACs) as an additional service.

Overall, 40% (1008/2500) of respondents said they did not receive an annual review, but that they would like one. The remaining 28% (693/2500) stated that they did not want an annual review, which may indicate that they have open access to an SCN when required or have become expert at managing their stoma and associated issues, so do not consider that this is necessary. Four respondents did not respond to the question about annual reviews.

Because the cohort of respondents had had their stoma for different lengths of time, the results may indicate that ostomates were at different stages of the care pathway or that there is significant variation in the pathway of care across England in terms of follow-up.

Stoma products and service delivery

The survey included questions about choice of stoma products, the availability of samples, obtaining products (including prescribing), customisation and delivery. The majority of patients (93%; 2325/2500) receive their stoma products from a DAC and 69% (1725/2500) use the customisation service to have their appliances cut to their requirements. In most cases (93%; 2296/2475), respondents were given information about how to obtain products by the SCN. However, 55% (1367/2488) did not think that they were given a choice of where to obtain their stoma products, for example whether to use a DAC or pharmacy, or which DAC to use, which may indicate that the SCN selects the supplier (DAC).

Responses to questions relating to product selection indicated that 53% (1312/2488) of respondents felt they were not given a choice of stoma product on hospital discharge. The selection is usually led by the SCN and based on multiple factors, including the person's body shape, skin integrity, stoma construction, stoma output and dexterity. Occasionally, this means that there is a limited range of products to meet a patient's specific needs, so the ostomate has little choice of product.

Overall, most respondents (91%; 2222/2451) were satisfied with the range of products available to meet their needs. Some 11% (273/2480) purchased products available on prescription themselves. This may be due to implementation of product formularies, which select products available to ostomates based on local commissioning decisions or that a product is not seen as clinically necessary, but an ostomate would like to use it.

Sample products are available via multiple routes, including online request forms, stoma open days, newsletters or magazines, or by requesting products from either their usual supplier or another delivery company. About two thirds (66%; 1640/2491) of respondents reported receiving sample products in the preceding 12 months (2019-2020), and 37% (765/2066) of those receiving samples subsequently asked that they be prescribed.

Personal experience

To elicit a greater understanding of the experience of stoma care in hospital and at home, respondents were asked what had gone well with their care, and areas for improvement in each setting. Table 2 shows the themes identified from the free-text responses for both settings.

The quotes that follow have been used verbatim to demonstrate both positive experiences and the need for improvement within each theme.

Hospital-based care

Overall, a high proportion of respondents identified their care in hospital as excellent. When asked what could be improved 40% (760/1884) provided comments such as ‘everything was excellent’. In contrast, 8% (157/1884) of respondents provided candid and detailed negative personal experiences alongside general statements indicating a poor experience, such as ‘it was all very limited’. Responses that could not be themed were removed from further analysis and coding; this included incomplete responses or where respondents stated not applicable or n/a. Analysis of the responses produced six broad themes:

• Visits
• Psychological care
• Physical care
• Information sharing
• Specialist stoma knowledge
• Products.

Each theme is divided into several related subthemes.

Visits in hospital

The theme of visits reflects the positive impact of having frequent face-to-face contact with the stoma specialist while in hospital, and was raised by 49% of coded responses (692/1405). Further to this, 26% of themed responses (250/946) identified a lack of visits from the stoma care team and reported that the nurse did not allow sufficient time for their care needs. Respondents who did have visits observed that these were irregular, short and untimely. SCNs were unavailable out of hours, weekends or bank holidays. Some thought that there were not enough nurses available to allow for daily visits.

‘Daily visits from stoma nurse [are needed] to help with managing stoma and addressing problems.’

‘No weekend cover by the stoma nurses. My first weekend I experienced a leaking bag, [and] was quite distressed by this, and the general nursing staff were not well trained in how to deal with it or me. Need to have the right support seven days a week, especially with emergency surgery; mentally very shocking.’

Psychological care in hospital

Psychological care was raised as a theme and referenced by identifying feelings of being supported, confident and reassured in readiness to go home. The value of peer support, such as being visited by others with a stoma, was also mentioned.

Respondents referred to psychological care both within the ‘what went well’ and the ‘areas for improvement’ sections of the survey.

‘The ability of my stoma nurse to help me not merely to deal with the physical practicalities of adapting to a new way of life – showing me how to use the bags etc – BUT, more importantly, help with the massive psychological changes that I experienced during this time.’

‘There was some practical support, but no emotional support to help you come to terms with having a stoma.’

‘I really believe there should be counselling post-stoma surgery and continued mental health support.’

Physical care in hospital

A key focus of hospital stoma nursing is the act of physical care and encouraging, teaching and observing the management of the stoma. The activity of care giving was raised as a positive element of hospital-based care by 36% of themed responses (500/1405). This included:

• Receiving training and instruction
• Being part of the process of, and involvement in, the practical aspects of appliance changing
• Having stoma function explained
• Being offered guidance on managing problems
• Receiving dietary guidance.

‘… being taught how to make a template and cut my bags to size, even if I never thought I would be able to do it, was good for me as even now my stoma changes shape and size so I can adapt accordingly – without a template now either …’

In addition, some respondents described areas for improvement relating to physical care, such as the environment of care lacking privacy, for example having to change the stoma appliance behind curtains in bays and the lack of toilets on colorectal wards.

‘Access to a toilet with more privacy and not used by so many people. A toilet facility solely for the use of stoma patients would be good (because of the time it takes to deal with bag changing etc).’

Information sharing in hospital

This theme represents the giving of verbal information, usually preoperatively, about what to expect in hospital and living with a stoma. It was reflected in both aspects of care that worked well and in areas for improvement, indicating its importance and the variation in delivery.

‘The advice prior to my operation was invaluable. It was excellent to have a nurse on hand to explain everything to me whilst in hospital and the follow-up appointments were extremely reassuring. I have a direct phone line to the nurses, and they will respond very quickly …’

Information regarding general recovery and what to expect after abdominal surgery, as well as hernia prevention advice, was raised repeatedly as an area requiring much greater input in hospital. Some respondents recognised that they were given a lot of information, which was often written, but said that they could not take it all in.

‘A lack of information about things that could, and were likely to, happen post surgery, eg a) hair loss b) mucus plug c) hernia d) depression.’

‘Maybe given information on exercise on stomach area which could be done at home. I have developed a parastomal hernia, which maybe could have been avoided if I had known about gentle exercises I could have done to help strengthen my abdominal area.’

Specialist stoma knowledge in hospital

Responses identified the need for specialist stoma knowledge from the nurses caring for them, which enhanced and contributed significantly to their experience of care. This was found in comments appreciating the positive impact having a nurse with specialist knowledge had on their care, but also in those highlighting the negative impact of its absence. A lack of knowledge, skill and competency among staff, especially when a respondent was not on a colorectal ward or when care was provided by other non-stoma specialist staff members, were repeatedly raised.

‘When on a bowel ward, everything works well as the staff understand what you need. However, on a normal ward it is astonishing how little the nursing staff know.’

‘Initially, I had a ward nurse helping me with the bag and she had very little knowledge of how it worked.’

Products in hospital

The correct use of products and support with obtaining supplies was mentioned by respondents. This includes subthemes on the importance of product supply on discharge home, as well as having a choice of products, which some respondents felt was restricted.

‘I was discharged without any stoma products supplied, as there appeared to be no liaison between [the] discharge nurse and stoma team. I was discharged Friday and stoma supplies came Monday. Stoma team not contactable at weekends. This led to me having to improvise with plastic bags for three days.’

‘Maybe more info on different products and delivery companies [would be beneficial].’

Home-based care

Having a stoma created is life-changing surgery and the needs of ostomates are likely to be lifelong. Respondents to the survey were asked to share their views about what had worked well and what areas they would recommend for improvement with regard to the stoma care service they experienced at home. Similar to the questions about hospital stoma care, a number of respondents provided overall statements about the care received at home, which could not be themed. More specifically, 27% (679/1802) of those responses that could not be themed were general positive statements and 12% (230/1978) general negative statements. The remaining comments were coded, with the exception of responses that were incomplete or stated n/a. The themes broadly mirrored those for hospital-based care and include:

• Visits
• Psychological support
• Physical care
• Products.

Visits at home

The theme of visits was also the key theme across all the responses, both as positive (47%; 712/1515) and negative experiences (40%; 358/894). Respondents raised access to support by way of specialist SCN visits at home as key to their recovery.

‘Home visits [by an SCN] within a few days of being in a home environment and [enabling you] to go through things when you can concentrate.’

‘… needed to have more visits and not the feeling of being suddenly abandoned after a couple of visits – that was awful.’

Alongside longer visits being required to prevent rushing and to enable a better quality holistic experience, ostomates highlighted they wanted the option to request access to an SCN as needed, gaining prompt and timely responses, and being assured that answerphone messages were picked up. The need for long-term care and support as an area for improvement was mentioned by 19% (288/1515) of respondents. They wanted this to be through ongoing contact with the stoma care team, which could be either nurse led (regular reviews) or patient led (direct access). Also included in the subtheme of long-term care and support were stoma-related education and product knowledge for the wider healthcare team so ostomates were not reliant on the SCN long term.

‘In [area] being able to request a visit when I needed it. Again, the professionalism of the nurses was impressive.’

‘I would have app reciated a yearly check-up/chat … I would not have wanted constant hospital appointments, which can be difficult to attend when you are working. These days I love the email services that are available from the IBD [inflammatory bowel disease] nurses and GP, and the fact that advice is at the end of the phone. Something like that for stomas would be good.’

Psychological care at home

Psychological care and emotional support remain important to ostomates once they are discharged home. The transition from hospital to home can be an unsettling and daunting experience, and raise patients' anxiety.

The need for psychological support fell into subthemes, which included the characteristics of the nurse, such as displaying empathy, as well as wanting to be signposted to other sources of support, such as support groups.

‘Some stoma nurses we have found to be impatient and not always understanding what a huge change to your life this is. They may be used to it every day dealing with stomas, but it's new to us and quite daunting.’

‘All patients should be given the information of their stoma association, CA, UA and IA [Colostomy Association, Urostomy Association and Ileostomy Association]. The worst part was feeling alone, that you are the only person your age with one.’

The feelings of psychological and emotional support are closely linked to the provision of visits, ease of patient-directed access to the service and the quality of care received.

‘During the first few days at home it would have been good to have had an occasional visit from the stoma nurse to help with changing and to give some reassurance, since everything is so scary.’

Physical care at home

Training and support in managing the physical aspects of living with a stoma remain important at home, especially assessment of leaks and sore skin. However, longer term care needs were raised as well and included important areas, such as the availability of irrigation training and hernia prevention advice. This reflects the theme raised in hospital care and is closely linked to the need for long-term care and support beyond the initial transition home and recovery from surgery.

‘Much could have been done to alleviate worries after being sent home before anything had come through the stoma. Diet advice, use of any laxatives, choice of products to avoid soreness and irritation were just a few problems. Best advice came from a telephone call to an ostomate after number obtained by Google.’

‘The one-to-one support when I decided to irrigate every morning. This is quite a daunting task to undertake on your own. The stoma nurse came to my house at 8am for three mornings in a row. The first day she did the irrigation. The second day I did it with her help. The third day I did it on my own. This level of support was essential to give me the confidence to irrigate. This had a massive impact on my confidence at work and socially. I now know I need to worry less about my stoma making a noise during work meetings and so on, which could be embarrassing. Most people at work have no idea that I have a stoma.’

‘To be told that a hernia could develop and suggest supportive clothing. Early intervention could have delayed this happening.’

Products at home

Ostomates' experience and feedback around the availability of products and the choice available to them included access to samples and choice of DAC. They also commented that ease of access and prompt delivery were important factors for them, as well as being able to feel that their choice of products was not hampered by external factors such as local product restriction. This related in part to industry relationships with hospital trusts and the mechanisms in play for managing prescribing budgets.

‘A visit and help with products. The stoma nurse should be independent from product companies and able to offer different brands.’

‘Patients being able to have [a] choice of products that work for them. It's a long-term awful medical situation to deal with and products being limited by CCG [clinical commissioning groups] on pure cost, and having to battle to get things you need to cope with day-to-day life, is awful.’

Some comments reflected on how their relationship with health professionals was affected by the restriction of choice.

‘For me, the relationship with my GP has been the most frustrating part of the process of recovery. I do not feel that the GP understands the profound effect stoma surgery has on patients and the need for the organisation of supplies and appointments to be as straightforward as possible. I feel that there is also an increasing pressure on GPs to deal with stoma supplies in terms of cost cutting and this places unnecessary pressure and creates extra stress and distress on the patient …’

Discussion

The results of the survey provide rich and valuable perspectives on the experiences of the care received by ostomates, the products they use and their access to products. The majority of patients expressed a positive view of the care they had received overall. However, the respondent experiences demonstrate that there is significant variation in service provision both in hospital and at home, highlighting inequalities in health provision. The quality of care received, the knowledge and skills of the caregivers, and the environment and tools available to manage the stoma cannot be overestimated for ostomates.

The variation in service was most starkly revealed within the theme of visits during both hospital-based and home-based care. This was in the contacts made with ostomates, either face to face or by phone and in what ostomates wanted in relation to long-term support. For example, ostomates commented on where and when they are seen after surgery, including time spent with the nurse and how they access support independently.

Around 28% (693/2500) of respondents indicated that they did not want to have routine follow-ups; however, 40% (1008/2500) stated that they would like to have an annual review. The varied needs of ostomates should be considered a priority by those planning and delivering stoma care services. There is a balance to be made between encouraging independence, establishing routine follow-up and offering a flexible patient-centred pathway and alternative routes of patient-led access, such as email or text messaging. Whichever approach is taken, the importance of promoting skin integrity and access to a specialist SCN to manage the myriad of stoma complications that can occur is vital.

The expertise of the SCN was recognised positively and acknowledged as an important factor compared with limited knowledge among general nurses in the hospital environment. Despite this positive point, psychological care was found to be lacking. The significant psychological consequences of stoma surgery have been widely reported in academic papers (Di Gesaro, 2016; Capilla-Diaz et al, 2019). Ostomates in this survey noted the lack of consistency in access to counselling and the need for improved signposting to peer support. The patients who had undergone emergency surgery also described feelings of abandonment. This may be because they did not have the benefit of being provided with information pre-operatively, and because the additional time needed to deliver this after surgery was not available.

Ostomates who had undergone major surgery indicated feeling overwhelmed; although the provision of information by way of booklets may be present, it can be difficult to take in and retain information during the rehabilitation phase of recovery. In this context, the impact of anaesthetic drugs on cognitive function (Wasserman and McGhee, 2017), hormone release due to the stress response and anxiety have been shown to affect working memory capacity and task performance (Moran, 2016; Yaribeygi et al, 2017). There is a significant focus on providing patients with stoma information pre-operatively (Wasserman and McGee 2017), however, it is not clear whether the cognitive impact of surgery is taken into account in terms of how information is provided to patients having emergency surgery or reinforced following surgery. It is worth noting that, according to Hardiman et al (2016), promoting patient autonomy prior to discharge from hospital by preparing them to self-care resulted in reduced readmission rates.

This survey has highlighted the need for greater information provision for ostomates, including access routes to support garments to prevent hernias, and information and training in colostomy irrigation. The findings of the survey may have had a focus on these areas because over half the respondents were colostomists, who may be able to irrigate and who had permanent stomas increasing their hernia risk (Carne et al, 2003). Respondents indicated that some information that could help ostomates manage independently was not always provided, for example how to manage skin soreness, available products and diet.

Ostomates who responded to the survey stated that they were not often offered a choice of dispensing services and sometimes experienced restrictions when choosing a product. The selection of products to manage the stoma effectively after surgery may require significant support and guidance from the nurse to reduce the incidence of appliance failure and the consequences of this. Furthermore, there is a need for adequate discharge planning to ensure that ostomates, when discharged home, have appropriate supplies; this is important, because the consequences of insufficient product supplies and appliance failure can have a significant psychological and physical impact on patients (Mota et al, 2016). As ostomates gain more experience over time and accrue greater knowledge of their own stoma needs they may become experts in their needs and benefit from an approach that facilitates a balanced approach to self-care, autonomy and decision-making.

Limitations

The authors acknowledge that ostomates' recall of facts may be affected following surgery, especially where care had been received some time previous to the survey.

The volume of data gathered means that some sections of the questionnaire are not reported in the article, including the audit of delivery services.

Conclusion

The outcomes of this survey provide first-hand insight into the experiences and views of ostomates in England, giving them a voice and platform through which to inform and improve stoma services nationally. The survey results provide a vital foundation for future design of stoma care services to enable these to better meet the needs of ostomates. This requires careful planning and consideration of how health care is provided in future. Exploring the status of the expert patient and the advantages of self-care, alongside the initial trauma and psychological impact of having a stoma formed, will need healthcare providers to take a flexible and sensitive approach to service design.

KEY POINTS

• Ostomates, when given the opportunity, are invested stakeholders in their care, who can share their knowledge and experiences to develop stoma care services
• The survey, which had a total of 2504 responses, showed variations in stoma care services across England
• Many respondents felt that during their care in hospital, general nurses lacked specialist knowledge in supporting patients with a stoma
• There was a positive response to interactions with specialist stoma care nurses. However, ostomates stated that there was a lack of information regarding stoma care, products and product choices both during hospital-based care and home-based care

CPD reflective questions

• How does the patient experience in this article resonate with your stoma care nursing service?
• How would patients in your stoma service talk about their experience? Is it a good experience for everyone?
• How can you develop your stoma care knowledge to meet the needs of your patients?