1Executive summary

1.1 Background

NHS Nottingham and Nottinghamshire Integrated Care Board is working with local health partners to develop a clearer and more consistent pathway for people who need ongoing nephrostomy care. Current care is provided in several settings, including people’s homes, GP practices, community clinics, and hospitals. The engagement was designed to understand people’s current experiences, what matters most to them, and how they would feel about possible changes to care. 

An anonymous Microsoft Forms survey was open from 1 July to 22 July 2026. There were 66 submissions. One person did not consent to continue, leaving 65 usable responses. A Microsoft Teams (video call) discussion was also offered. One person registered for this call, and after discussions with this person, they stated they would prefer to provide feedback by email. No email response was received, although the person confirmed that they had completed the survey. As there were no attendees, the Microsoft Teams meeting did not go ahead.

1.2 Key findings

• Overall satisfaction with current nephrostomy care was high, with 83% of respondents reporting that they were satisfied or very satisfied with their current care arrangements.
• Access to care was generally positive, with 88% of respondents describing their access to nephrostomy care as fairly easy, easy or very easy.
• Respondents currently receive nephrostomy care across a variety of settings, including hospital services, community clinics, GP practices and home-based care, highlighting variation in delivery models across Nottingham and Nottinghamshire.
• Care closer to home was strongly valued. Home was the most commonly preferred location for care, selected by 66% of respondents, with being close to home identified as the most important aspect of care by 63% of respondents.
• Clinical expertise and continuity of care were important factors influencing patient experience. Respondents consistently highlighted the value of seeing experienced staff (60%) and receiving care from a consistent service (38%).
• Timely access to advice and support was a key priority. More than half of respondents (52%) identified quick access to help if a problem occurred as important, with qualitative feedback demonstrating that patients value clear and responsive support arrangements.
• Although most respondents (86%) reported knowing who to contact if problems occurred, some described uncertainty about escalation routes and experiences of being passed between services, indicating opportunities to improve pathway clarity and coordination.
• Views regarding weekly nephrostomy system changes were mixed. Whilst 42% preferred weekly changes, 31% preferred more frequent changes and 27% were unsure or had no preference, suggesting that a single approach may not be suitable for all patients.
• The most frequently reported concerns regarding less frequent nephrostomy system changes were infection, leakage, blockage, skin complications and the loss of opportunities for routine clinical monitoring. Respondents emphasised the importance of ensuring any reduction in frequency is clinically appropriate and based on individual need.
• Family members and carers play a significant role in supporting nephrostomy care. Almost nine in ten respondents (89%) reported having support from family or carers, with many describing reliance on spouses, partners, children or other relatives for routine care and help when problems arise.
• Qualitative feedback highlighted the importance of maintaining a flexible pathway that can respond to differences in clinical complexity, mobility, confidence, self-management ability and the availability of family or carer support.
• Respondents frequently linked positive experiences to reliable equipment supplies, experienced staff and care delivered close to home, whilst negative experiences were commonly associated with equipment issues, uncertainty about service responsibilities, difficulties accessing specialist support and unclear escalation arrangements.

1.3 Next steps

The findings will be shared with the nephrostomy pathway task and finish group and used alongside clinical, operational, financial, quality and equality considerations to develop a sustainable pathway of care for patients with a nephrostomy across Nottingham and Nottinghamshire.

2 Conclusions and recommendations

Conclusion 1: People value care close to home, but location should be based on individual need.

Recommendation 1: Develop a community-based model that can offer both clinic and home-based care. Decisions about location should consider mobility, clinical need, caring responsibilities, access, and patient preference.

Conclusion 2: Experienced staff, continuity and quick access to help are central to a good experience.

Recommendation 2: Set clear competency requirements for staff, support continuity where possible, and provide a single, clearly communicated route for routine and urgent advice.

Conclusion 3: A standard weekly bag change may suit some people but not everyone.

Recommendation 3: Use individual clinical assessment to agree on the frequency of system changes. Include clear criteria for more frequent care, review and escalation where there is leakage, infection risk, skin damage, blockage, or other complexity.

Conclusion 4: Fragmented responsibilities and unclear contact routes can leave people unsure where to get help.

Recommendation 4: Define responsibilities across hospital, community, primary care, equipment supply and out-of-hours services. Give each patient accessible written information describing who to contact and what to do if a problem occurs.

Conclusion 5: Supplies and equipment can have a major effect on safety, comfort and confidence.

Recommendation 5: Include reliable supply arrangements, correct product selection, discharge information, and a process for resolving incorrect or missing items within pathway specifications.

Conclusion 6: Relatives and carers provide substantial practical support.

Recommendation 6: Offer training and information to patients and carers who wish to self-manage, together with a contingency plan if the usual carer is unavailable.

Conclusion 7: Changes should be monitored after implementation.

Recommendation 7: Monitor patient experience, access, continuity, infection concerns, leakage and blockage, skin complications, supply problems, unplanned contacts and hospital use. Review feedback at agreed intervals and adjust the pathway where needed.

3 Background

3.1 National context

In 2026, the British Association of Urological Nurses (BAUN) and the National Nephrostomy Working Group published a national framework for nephrostomy care. The framework promotes consistent, safe and patient-centred care across hospital, community and primary care settings, with a focus on clear clinical ownership, effective discharge planning, support for self-management, clear escalation routes and improved patient experience. The Nottingham and Nottinghamshire nephrostomy pathway work has been informed by these national principles and best practice standards.

3.2 Local context

People with a nephrostomy may require support with bag and dressing changes, skin care, supplies and the management of complications such as leakage, blockage and infection. Across Nottingham and Nottinghamshire, nephrostomy care is currently delivered through a range of settings including hospital services, community nursing teams, community clinics, GP practices and support from family members and carers. Survey responses and stakeholder discussions have highlighted variation in how care is provided, who delivers care, and how patients access advice and support.

The pathway development work aims to establish a clearer, sustainable and appropriately resourced approach to nephrostomy care across Nottingham and Nottinghamshire, reducing unwarranted variation and improving consistency of patient experience. A key objective is to align the local model with the principles set out in the 2026 BAUN National Nephrostomy Framework, including clear clinical ownership, consistent care pathways, support for self-management where appropriate, and clear escalation arrangements when complications occur. As part of this work, the programme is considering alignment with national best practice, including reducing the frequency of nephrostomy system changes, such as urine bag changes, where clinically appropriate. The aim is to ensure patients receive care that is evidence-based, consistent and tailored to their individual needs.

3.3 Engagement aims and objectives

• Understand where people currently receive care and how easy it is to access. 
• Understand satisfaction with current care and what works well or less well. 
• Identify preferred locations for future care. 
• Understand what matters most when receiving nephrostomy care. 
• Explore views about weekly rather than multiple weekly system changes, where clinically safe and appropriate. 
• Identify concerns, support needs and confidence in managing between visits. 
• Understand whether people know who to contact when a problem occurs. 
• Use demographic information to consider whether responses represent different communities and needs. 

4 Methods

4.1 Who we wanted to hear from 

We wanted to hear from adults (over 18) with current or historical experience of nephrostomy care in Nottingham and Nottinghamshire, including people completing the survey themselves and relatives or carers responding on someone else’s behalf. 

4.2 Online survey 

An anonymous survey was developed online using Microsoft Forms. It included questions about current care, access, satisfaction, preferred location, frequency of changes, confidence, support and demographic characteristics. Free-text questions allowed people to explain their experiences in their own words. Translation services were available on request. A full list of the questions asked within the survey can be found in Appendix 1.

The survey opened on 1st July 2026 and closed on 22nd July 2026. There were 66 submissions. One respondent did not consent to continue, so 65 responses were available for analysis. Not everyone answered every question. The opportunity to participate was shared with all patients registered with a nephrostomy via hospitals, GP and Community Services.

4.3 Online discussion 

A Microsoft Teams discussion was planned as an additional opportunity for people to share their views. One person registered to attend and was contacted in advance to confirm that they were the only registered attendee. The individual was offered the opportunity to proceed with the discussion but chose instead to provide feedback separately and subsequently completed the survey. As a result, the Teams discussion did not take place; however, the individual’s views were captured through their survey response.

4.4 Analysis 

Closed questions were analysed using counts and whole-number percentages. Where respondents could select more than one option, totals may exceed the number of respondents. Free-text responses were reviewed and grouped into recurring themes. Short anonymised quotations are included to illustrate these themes. Potentially identifying details and highly sensitive personal narratives have not been reproduced in this public report. 

Important note 
This was an engagement exercise, not a clinical study or a vote on a final service model. The findings show the experiences and preferences of people who chose to respond. They will be considered alongside clinical evidence, equality and quality assessments, workforce, finance and implementation requirements. 

5 Survey demographics

In total, 65 people provided usable survey responses. Of the 61 people who answered who they were responding for, 50 (82%) responded for themselves and 11 (18%) responded on beh5 alf of someone else. Demographic questions were optional, so the number of responses varies. Further breakdown of survey demographic responses can be found in Appendix 2.

Characteristic	Summary
Age	Of 64 valid responses, 57 (89%) were aged 55 or over. The largest age groups were 75 to 84 years (17 people), 65 to 74 years (14 people), 55 to 64 years (13 people) and over 85 years (13 people).
Gender	Of 64 standard responses, 33 (52%) selected female, 30 (47%) selected male and one (2%) preferred not to say. One additional response could not be coded to the available categories.
Ethnicity	Of 64 responses, 60 (94%) selected White British. Four people selected another ethnic background.
Religion or belief	Of 64 responses, 40 (63%) selected Christian, 22 (34%) selected no religion, one selected agnostic and one selected Muslim.
Disability	Physical disability was selected by 30 respondents. Mental health condition was selected by eight, learning disability by two and neurodivergence by one. Respondents could select more than one answer or provide another description.
Long-term conditions	Of 65 responses, 42 (65%) said they had a physical or mental health condition expected to last 12 months or more.
Effect on daily activities	Of 62 people giving a yes or no response, 49 (79%) said their conditions reduced day-to-day activities a little or a lot.
Caring responsibilities	Of 63 responses, nine (14%) identified as a paid or unpaid carer.
Location	Responses were received from Nottingham City and Nottinghamshire districts. One respondent stated that they lived in Bolsover District.
Employment	Of 65 responses, 47 (72%) were retired, eight (12%) were long-term sick or disabled and seven (11%) were employees. Other responses included self-employment, looking after home or family and prefer not to say.

What this means for interpretation 
The respondents were mainly individuals aged 55 and over, and White British. The findings provide useful evidence from people with direct experience, including people with disabilities and long-term conditions, but should not be assumed to represent every person who uses nephrostomy services. 

6 Findings

This section summarises the findings from the questions within the survey and have been grouped together for analysis. Further themes from the free-text answers can be found in Appendix 3.

6.1 Views on the current care received for patients with nephrostomy

Questions considered: Where do you currently receive your nephrostomy care? Overall, how satisfied are you with your current care? What matters most to you when receiving care? What works well about your current care? What doesn’t work well about your current care?

Respondents currently receive nephrostomy care from a range of services and locations. Of the 65 people who answered this question, 22 (34%) selected hospital care, 20 (31%) received care at home from a nurse, 18 (28%) received care at home from a family member, friend or carer, 13 (20%) received care through a GP practice and 12 (18%) attended a community clinic. Some respondents received care from more than one service, so these figures do not add to 100%. This demonstrates that current care arrangements vary and may involve several organisations or individuals.

Overall satisfaction with current care was high. Of the 64 people who answered, 38 (59%) were very satisfied and 15 (23%) were satisfied. Combined, 53 respondents (83%) were satisfied or very satisfied. Seven (11%) were neither satisfied nor dissatisfied, two (3%) were dissatisfied and two (3%) were very dissatisfied.

Respondents were asked what mattered most to them when receiving nephrostomy care and could select more than one answer. Of the 63 people who responded:

• 40 (63%) selected being close to home.
• 38 (60%) selected seeing experienced staff.
• 33 (52%) selected quick access to help if there was a problem.
• 24 (38%) selected consistency and receiving care from the same service.
• 11 (17%) selected having fewer visits.
• Nine (14%) selected flexible appointment times.

The free-text responses showed that positive experiences were commonly associated with helpful and experienced nurses, care delivered locally or at home, continuity of care, good relationships with staff and flexible arrangements. Respondents also valued straightforward appointment booking, reliable equipment deliveries and being able to contact a familiar service when problems occurred.

“The district nurse team seem very helpful and try to overcome any difficulties.”

“It is local and the care is excellent.”

“I am well looked after and have good rapport with the nurses I see.”

“Very easy to book times of bag changes a month in advance and a short distance to drive to the surgery.”

However, experiences were not consistent for everyone. The main difficulties described included:

• Uncertainty about which service was responsible for ongoing care.
• Being passed between hospital, community and GP services.
• Limited access to staff with the appropriate nephrostomy skills.
• Incorrect, missing or unsuitable equipment and supplies.
• Unclear discharge information and arrangements.
• Unpredictable timings for home visits.
• Lengthy or difficult hospital visits.
• Leakage, blockage, infection, discomfort and skin problems.
• Reliance on relatives or carers when professional support was unavailable.

A lack of clear emergency or out-of-hours support.

“It was a bit chaotic at the beginning as I was trying to use my local GP and the district nurses.”

“I never know when anyone is coming and, as I also care for my dad at a different address, it is a juggling act.”

“No emergency contact in case of emergency.”

The findings indicate that many respondents are positive about the individual staff and services supporting them, but the overall offer is variable. The main areas for improvement relate to consistency, coordination between services, clarity of responsibility, access to appropriately trained staff and reliable arrangements for equipment and urgent support.

6.2 Ease of access for patients with nephrostomy

Question considered: How easy is it for you to access your current care?

Most respondents reported being able to access their current care easily. Of the 64 people who answered:

• 33 (52%) described access as very easy.
• 16 (25%) described access as easy.
• Seven (11%) described access as fairly easy.
• Six (9%) described access as difficult.
• Two (3%) described access as very difficult.
• Overall, 56 respondents (88%) described access as fairly easy, easy or very easy.

Positive experiences of access were associated with care being provided close to home, predictable appointments, flexibility and support from family members. Some respondents said that family-supported care allowed changes to take place at a time that suited them and avoided waiting for a home visit or travelling to hospital.

“I could have it easily at home at a time of my choosing during the day. This enabled me to continue to work effectively.”

“The district nurse arranged times that allowed me to continue with the regular activities that I do outside the flat.”

Where access was more difficult, respondents described mobility problems, pressure to attend a GP practice rather than receive care at home, lengthy hospital visits, transport difficulties, waiting for home visits without an agreed time and limited access to a trained professional.

“Hospital changes are a nightmare because of the time the visit takes when dementia patients don’t understand what they are there for.”

“The fact I do not know what time a nurse is coming out for home visits is awkward, as I also care for my dad who lives on the other side of town.”

Although access was rated positively by most respondents, the qualitative feedback shows that ease of access depends on more than whether a service is available. Location, mobility, appointment timing, staff competence, transport and the ability to obtain help promptly all influence whether care is genuinely accessible.

6.3 Patients preferred place of care 

Questions considered: Where would you prefer to receive your nephrostomy care? What matters most to you when receiving care?

Home was the most frequently selected preferred place of care. Of the 64 respondents who answered this question:

• 42 (66%) selected care at home.
• 15 (23%) selected a GP practice.
• 13 (20%) selected hospital.
• Nine (14%) selected a community clinic.

Respondents could select more than one location, so percentages do not add to 100%.

The preference for home-based care was linked to convenience, mobility, avoiding travel and hospital waiting times, maintaining work or other activities, and receiving care in familiar surroundings.

“My family do my changes at home and that works for me.”

“I am managed at home.”

“My husband changes my bag three times a week, then I see the GP nurse once a week. This works well.”

Other respondents preferred a GP practice or community clinic because it was local, provided planned appointment times and gave access to experienced staff. Hospital care remained the preferred option for some respondents who valued specialist knowledge, established relationships or access to a urology team.

The location of care was therefore only one part of respondents’ preferences. Being close to home was selected by 40 of 63 respondents (63%), but respondents also placed considerable importance on experienced staff, quick help when problems occurred and consistency of care.

The findings suggest that care closer to home should not be considered separately from workforce competence, continuity and escalation support. A future model should be flexible enough to accommodate different levels of need and patient preference.

6.4 Views on frequency of nephrostomy system changes, patient confidence and support needs

Questions considered: How often do you currently have your nephrostomy system changed? If it was safe and appropriate, how would you feel about having a weekly nephrostomy system change instead of multiple times a week? What concerns would you have about less frequent system changes? How confident do you feel managing your nephrostomy between appointments? Please identify any support or help you may need to manage your nephrostomy. Do you have support from family or carers if needed?

6.4.1  Current frequency of nephrostomy system changes

Of the 63 people who answered:

• 51 (81%) said their nephrostomy system was changed more than once a week.
• Nine (14%) said once a week.
• Three (5%) were unsure.

Some respondents interpreted “system changes” differently, with some referring to bag changes and others referring to tube exchanges.

“Difficult question to actually answer, not sure what system changes you are referring to, tube change which I have in hospital every eight weeks or bag change which my wife does every two to three days.”

6.4.2 Views on the proposed changes to the frequency of nephrostomy system changes

Of the 62 people who answered:

• 26 (42%) preferred a weekly change.
• 19 (31%) preferred more frequent changes.
• 10 (16%) were unsure.
• Seven (11%) had no preference.

Views were mixed. Weekly changes were preferred by the largest group, but almost one-third preferred more frequent changes.

“Already have the weekly dressing change.”

“Only once a week frees up the rest of the week to do other things.”

“I have had my nephrostomy five years and am more than happy having my bag changed three times a week.”

6.4.3  Concerns about reducing the frequency of nephrostomy system changes

Common concerns about less frequent changes included:

• Infection and sepsis.
• Leakage.
• Blockage.
• Skin soreness and skin damage.
• Hygiene.
• Discomfort.
• Reduced monitoring.
• Increased need for emergency care.

“Risk of infection and checking of my skin, as it is prone to redness.”

“Increased risk of infection and more potential for leakages, requiring an emergency visit by the district nurse.”

“Possible increased risk of infection and less regular monitoring.”

These findings suggest that frequency of changes should be determined through individual clinical assessment, taking account of clinical history, leakage, infection risk, self-management ability and patient preferences.

6.4.4 Patients confidence managing their nephrostomy between appointments

Of the 65 respondents:

• 22 (34%) felt very confident.
• 24 (37%) felt confident.
• Three (5%) felt somewhat confident.
• 10 (15%) felt neutral.
• Six (9%) were not confident.

Overall, 49 respondents (75%) described themselves as somewhat confident, confident or very confident. However, one in four respondents were neutral or not confident.

6.4.5 Support needs identified by patients

Respondents identified a range of support needs including:

• Access to appropriately trained professionals.
• A clear telephone number for advice.
• Rapid support for blockage or leakage.
• Information about routine care and warning signs.
• Help obtaining the correct equipment and supplies.
• Training for patients, carers and relatives.
• Planned visit times.
• Support with skin care.
• Contingency arrangements when family carers are unavailable.

“Knowledge base would be useful.”

“Quick support when the tube is blocked.”

“District nurse number for advice and help with problems.”

“If my husband was unable to provide care [I would need support].”

6.4.6 Support currently experienced from family and carers

Of the 65 people who answered, 58 (89%) said they had support from family members or carers if needed and seven (11%) said they did not.

Family members and carers frequently supported nephrostomy care by undertaking bag changes, monitoring for complications, ordering supplies and contacting healthcare services. While this enabled many patients to receive care closer to home, some respondents described a significant reliance on a single individual.

“My daughter and husband take care of my three-times-a-week change.”

“My wife takes care of changing the guard and I have 24-hour support if needed.”

The findings suggest that patients and carers who wish to participate in ongoing nephrostomy care should have access to appropriate training, information and ongoing clinical support.

6.4.7 Knowing who to contact if problems occur

Question considered: If you had a problem, do you know who to contact?

Most respondents said they knew who to contact if they experienced a problem. Of the 64 people who answered:

• 55 (86%) said yes.
• Five (8%) said no.
• Four (6%) were unsure.

However, the free-text responses showed that knowing a telephone number or service did not always result in straightforward access to appropriate help. Some respondents described being redirected between hospital services, district nursing teams and GP practices.

“When I get a blockage I phone the emergency number at hospital, then they tell me I don’t come under them. They tell me to go to the district nurse. When I ring them they tell me I haven’t got a referral to them, so I end up not really knowing where I should go.”

“Phone number of support if anything goes awry so that I can access treatment.”

“If I have a worry I would have to ring the hospital or get someone to drive me to the hospital ward and wait hours.”

Respondents valued access to a known urology, nursing or hospital team where staff understood nephrostomy care and could provide timely advice.

The findings suggest that a future pathway should include a clearly defined and widely communicated route for routine advice, urgent concerns and out-of-hours support, with responsibilities understood across hospital, community and primary care services.

7 Appendices

7.1 Appendix 1: Survey questions

1. Please indicate if you are completing this survey for yourself or on behalf of someone else.
2. If on behalf of someone else, which of the options below best describes your relationship with that person?
3. Where do you currently receive your nephrostomy care?
4. How often do you currently have your nephrostomy system changed?
5. How easy is it for you to access your current care?
6. Overall, how satisfied are you with your current care?
7. Where would you prefer to receive your nephrostomy care?
8. What matters most to you when receiving care?
9. If it was safe and appropriate, how would you feel about having a weekly nephrostomy system change instead of multiple times a week?
10. What concerns would you have about less frequent system changes?
11. If you had a problem, do you know who to contact?
12. How confident do you feel managing your nephrostomy between appointments?
13. Please identify any support or help you may need to manage your nephrostomy.
14. Do you have support from family or carers if needed?
15. What works well about your current care?
16. What doesn’t work well about your current care?
17. Which of these best describe your gender?

18. Which age band do you fall into?
19. Is your gender the same as the sex you were assigned at birth?
20. What is your relationship status?
21. Which of these best describes your sexual orientation?
22. Are you pregnant, on maternity leave or returning from maternity leave?
23. Which of these best describes your ethnicity?
24. Which of these best describes your religion or belief?
25. Do you have a disability?
26. Do you have any physical or mental health conditions or illnesses lasting or expected to last 12 months or more?
27. Do any of your conditions or illnesses reduce your ability to carry out day-to-day activities?
28. Are you a carer?
29. How satisfied are you with the arrangements in place to collect your views?
30. What District do you live in?
31. Have you previously served in the UK Armed Forces?
32. What is your employment status?

7.2 Appendix 2: Demographic profile of survey respondents

A total of 65 respondents provided usable survey responses.

Gender (n=64)

Gender	Number of responses	%
Female	33	52%
Male	30	47%
Prefer not to say/Other	1	1%

Age (n=65)

Age Band	n	%
16-24	1	2%
25-34	1	2%
35-44	2	3%
45-54	3	5%
55-64	13	20%
65-74	14	22%
75-84	17	26%
Over 85	13	20%
Prefer not to say	1	2%

Ethnicity (n=64)

Ethnicity	n	%
White British	60	94%
Other ethnic backgrounds	4	6%

Religion or Belief (n=64)

Religion	n	%
Christian	40	63%
No Religion	22	34%
Other	2	3%

Long-Term Health Conditions (n=65)

Response	n	%
Yes	42	65%
No	22	34%
Prefer not to say	1	1%

Impact on Daily Activities (n=64)

Response	n	%
Yes, a lot	32	50%
Yes, a little	17	27%
No	13	20%
Prefer not to say	2	3%

Caring Responsibilities (n=63)

Response	n	%
No	54	86%
Paid carer	5	8%
Unpaid carer	4	6%

Employment Status (n=65)

Status	n	%
Retired	47	72%
Long-term sick/disabled	8	12%
Employee	7	11%
Other	3	5%

7.3 Appendix 3: Themes from survey responses

This appendix provides a summary of the key themes identified from the free-text survey responses. Responses have been grouped into common themes and representative quotations included to illustrate the views expressed by respondents. Minor edits have been made to some quotations to improve readability and remove potentially identifying information. The meaning of responses has not been altered.

7.3.1 What Works Well About Your Current Care?

7.3.2  Positive relationships with staff

The most frequently reported positive aspect of care related to healthcare professionals, particularly district nurses, community teams and hospital specialists.

Example comments:

“The district nurse team seem very helpful and try to overcome any difficulties.”

“I am well looked after and have good rapport with the nurses I see.”

“The nurses are very experienced.”

“Everyone has been brilliant.”

7.3.3 Home-based care

Many respondents valued receiving care at home, whether from healthcare professionals or family members.

“My family do my changes at home and that works for me.”

“I am managed at home.”

“The nurses coming to me.”

7.3.4 Flexible and convenient care

Respondents appreciated flexibility, reliable appointments and support that fitted around their daily lives.

“Very easy to book times of bag changes in advance.”

“The district nurse arranged times around my activities.”

“I could continue to work effectively.”

7.3.5 Family and carer support

Several respondents highlighted the role of spouses, relatives and carers.

“My husband changes my bag.”

“My daughter and husband take care of my changes.”

“My wife takes care of changing the guard.”

7.3.6 Equipment supplies

Some respondents reported positive experiences obtaining supplies and equipment.

“Supplies of equipment are easy to order.”

“The delivery of supplies.”

“NAMS order line is efficient and helpful.”

7.3.7 What Matters Most to You When Receiving Care?

Several recurring themes emerged from responses relating to what matters most when receiving nephrostomy care.

7.3.8 Care close to home

Many respondents reported that receiving care at home or locally was important. Benefits described included reduced travel, convenience, maintaining independence and avoiding lengthy hospital visits.

“Being close to home.”

“I am housebound.”

“At home where possible.”

7.3.9 Experienced staff

Respondents frequently highlighted the importance of receiving care from staff who were knowledgeable and experienced in nephrostomy management.

“Seeing experienced staff.”

“Safe and experienced staff and routines.”

7.3.10 Quick access to help

Many respondents valued being able to access support quickly if a problem occurred.

“Quick access if there is a problem.”

“Knowing help is available if something goes wrong.”

7.3.11 Continuity of care

Several respondents highlighted the benefits of seeing the same staff or service regularly.

“Consistency of seeing the same service.”

“Having people who know my situation.”

7.3.12 What Doesn’t Work Well About Your Current Care?

7.3.13  Unclear responsibilities and coordination

Some respondents described confusion about which service was responsible for their care or where to seek help.

“I don’t really know where I should go.”

“I was sent between services.”

“Nobody could tell me who was responsible.”

7.3.14 Equipment and supply issues

Problems obtaining supplies, receiving incorrect items or ordering equipment were frequently reported.

“Had recently experienced shortage of equipment.”

“Wrong orders.”

“No supplies.”

“The ordering system.”

7.3.15 Accessing help and emergency support

Several respondents felt escalation pathways were unclear.

“No emergency contact in case of emergency.”

“I have to ring multiple people.”

“I would have to wait hours if I had a problem.”

7.3.16 Hospital appointments and travel

Respondents reported difficulties attending hospital appointments, particularly older people and those with mobility concerns.

“Hospital visits are a nightmare.”

“A very long day for people with dementia.”

“Having to go to Nottingham if there is a problem.”

7.3.17 Unpredictable home visits

Several respondents highlighted uncertainty around appointment times.

“I never know when anyone is coming.”

“I don’t know what time a nurse is coming.”

7.3.18 Clinical complications

Leakage, infections, skin problems and blockages were recurring concerns.

“Leakages are a continuing problem.”

“Treatment of blocked tubes.”

“Problems with infection.”

7.3.19 Impact on family and carers

A number of respondents described the burden placed on carers.

“It puts extra work on my husband.”

“My wife worries about leaving me.”

7.3.20 What Concerns Would You Have About Less Frequent System Changes?

Infection

The most common concern was an increased risk of infection.

“Risk of infection.”

“The chance of infection.”

“Urinary sepsis.”

7.3.21Leakage and blockage

Many respondents worried that longer intervals between changes could increase leakage or blockage.

“More potential for leakages.”

“Risk of blockage.”

“The system becoming more vulnerable.”

7.3.22 Skin health and monitoring

Respondents expressed concern about reduced opportunities to monitor skin integrity and identify concerns early.

“Checking of my skin.”

“Skin soreness.”

“Redness around the site.”

7.3.23 Hygiene

Some respondents raised concerns about maintaining hygiene standards.

“Maintaining hygiene.”

“Keeping everything clean.”

7.3.24 Reduced professional oversight

A number of respondents valued regular professional contact.

“Less regular monitoring.”

“Missing problems before they become serious.”

7.3.25 Support or Help Needed to Manage a Nephrostomy

7.3.26  Access to advice and support

Many respondents wanted a clear point of contact for advice and reassurance.

“District nurse number for advice.”

“Phone number of support.”

“Someone to contact if things go wrong.”

7.3.27 Support with complications

Commonly identified support needs related to leakage, blockages and infection.

“Quick support when the tube is blocked.”

“Help with leakage.”

“Help if the nephrostomy stops draining.”

7.3.28 Training and information

Some respondents indicated that additional information would increase confidence.

“Knowledge base would be useful.”

“Information about what to do.”

“Training for carers.”

7.3.29 Equipment and supplies

Access to appropriate supplies was identified as a support requirement.

“Help with ordering supplies.”

“Making sure equipment is correct.”

7.3.30 Support if family carers are unavailable

Several respondents relied heavily on a spouse or relative.

“If my husband was unable to provide care.”

“If my daughter wasn’t available.”