Bowel Independence Day 2014 A survey on bowel management in multiple sclerosis Supported by July 2014 1
Contents Introduction... 3 Overview of views from people with MS... 5 Overview of views from specialist MS nurses... 9 Do clinical commissioning groups have referral pathways in place?... 12 Conclusion and summary of recommendations... 13 Appendix 1: Case study bowel management through anal irrigation... 14 Appendix 2: Declaration of Bowel Independence, July 2013... 15 2
Introduction In July 2013, Coloplast, along with a number of partners in the health and charity sectors, launched the Declaration of Bowel Independence, which outlined four key areas of focus to improve the quality of bowel management: Public awareness of bowel management problems and the impact they have on individuals and society must be raised. GPs need to offer a proactive approach to bowel management problems, particularly for those people with neurogenic disorders and chronic conditions. Guidelines and clinical pathways need to be in place to improve outcomes for people experiencing bowel management problems. People with bowel management needs should have access to specialist healthcare provision such as continence services. Following on from this, we have produced this report which looks specifically at bowel management in one condition - MS. The aim of this piece of work is to look more closely at a condition where proper bowel management is particularly important and provide an overview of what is happening on the ground, identifying where further work would help drive improvement. Many of the findings of this report continue to support the principles outlined in 2013, while also suggesting additional areas of focus which would help to improve the quality of bowel care. It is estimated that there are around 100,000 people living with MS in the UK, and that around half of these will experience constipation at some point with between 30-50% experiencing bowel incontinence 12 at some stage. Improving the way in which bowel problems are managed in those with MS could make a real difference to quality of life for thousands of people. Problems with the bowels can cause not only physical discomfort and ill-health, but also acute embarrassment and distress; they can also restrict a person s work and social life, as well as impacting on their other symptoms. Unfortunately, it is this sense of embarrassment which can often lead to problems not being dealt with early on. People are shy about raising problems with their GP or nurse and healthcare professionals often do not raise these issues proactively. While specialist healthcare professionals, such as specialist MS nurses, are often better able to raise the issue and identify problems, many patients have said that this problem was not discussed with them at all by any healthcare professional. Dealing proactively with bowel problems at an early stage can improve health outcomes, and also increase dignity for those with MS. We believe that GPs, general nurses, MS and continence specialist nurses and consultants all have a role to play in taking a more proactive approach to bowel management and working with patients to ensure that they receive the treatment they need. This approach is not only good for patients it can also help to save money for the health service. Analysis of Hospital Episode Statistic (HES) data showed that in 2013, 59 million was spent on non- 1 http://www.mstrust.org.uk/information/publications/bowel-managing-your-bowels/introduction.jsp 2 Pg. 2 MS Society: Managing the Bowel in MS, http://www.mssociety.org.uk/sites/default/files/documents/essentials/bowel%20in%20ms%20es25.1013%20- %20web.pdf 3
elective admissions to hospital for constipation, related to just five conditions MS, spinal cord injury, Parkinson s, spina bifida and stroke. Improving the quality of bowel services and ensuring that patients are able to access these services could deliver real savings for the NHS. To produce this report, we undertook a survey of people with MS, as well as a survey of specialist MS nurses, to get their views on the current quality of bowel care for those with MS. We also used Freedom of Information requests to access information on referral pathways across clinical commissioning groups (CCGs). 4
Overview of views from people with MS 1. When you were first diagnosed with MS, were you given information on how this condition can cause problems with your bowels, and advice on how to manage problems? 12% 88% Yes No From the responses we received to this question, it is evident that most people who are newly diagnosed with MS are not given information on how their condition can cause bowel problems, and how they should manage these problems. Given that around half of all people with MS will experience bowel problems at some stage in their illness, it would make sense to give people information at the time of diagnosis, so that they are prepared for problems which may arise and know how to address these issues. This would encourage earlier intervention, which can prevent problems becoming more complex and more costly further down the line. People should also be provided with more general information on wellness and bowel health, including the impact of diet, fluid intake and exercise. Recommendation: All people who are newly diagnosed with MS should be given specific information on how the condition could impact on their bowel and advice on what to do should problems arise. Bowel problems are more likely to occur later in MS, so healthcare professionals should ensure that the issue is raised periodically and that people know where to go for further information if problems arise. 2. During routine conversations with the healthcare professionals below, have they ever raised the issue of how MS may impact on your bowels without being prompted by yourself? (choose as many as apply) It has never been raised 43% Another healthcare professional 12% A specialist nurse 36% Your GP 10% 0% 5% 10% 15% 20% 25% 30% 35% 40% 45% 50% The responses to this question revealed that almost half of people with MS had never had the issue of how the condition may impact on their bowel management proactively raised by a healthcare professional this is concerning given the link between MS and bowel problems. This finding supports the call made in the 2013 Declaration of Bowel Independence that specific work is needed to encourage GPs and healthcare professionals to be proactive in raising bowel management with patients, particularly those in high risk groups. 5
Where the issue had been raised, it was a most commonly done so by a specialist MS nurse demonstrating the value for patients of being able to access healthcare professionals with a specialist knowledge of their condition. However, further work needs to be done to raise awareness among more general healthcare professionals. It should not be left to the patient to bring up the topic but doctors and nurses should ask at consultations and discuss the options. These can be unwelcome to begin with but as the symptoms get worse these may be a great solution. Talking to someone that knows more about the products that can help and can give time to discuss it would be a help. Survey respondent At the time of writing this report, the National Institute for Health and Care Excellent (NICE) is in the process of updating its guidelines on MS, which were first published in 2003. The scope of the update for the guideline deliberately omitted symptoms and treatments covered by other NICE guidelines that are common to other conditions, and hence there is no mention of bowel management. This means that any non-specialist health professional or an NHS manager arranging overall services will need to cross-reference other NICE guidance (specifically NICE CG49 Faecal Incontinence (2007) www.nice.org.uk/cg49). The MS Trust has expressed concerns about omissions from the guideline and about how usable the document will be for many health professionals, particularly those who may not specialise in MS. We are concerned that, given the pressures on staff time within the NHS, non-specialist staff will not have the time to cross-reference guidance, resulting in a risk of poorer overall care for people with MS. There is a concern that those commissioning services will only focus on areas which are specifically mentioned in the MS guidance, and not additional problems which will occur for many people with MS, such as with bowel management. Recommendations: Healthcare professionals, including GPs, need to offer a proactive approach to bowel management problems, particularly for those people with neurogenic disorders and chronic conditions. Guidelines on MS need to include specific information on bowel management. 3. Would you feel confident in talking to your GP about any bowel problems which you experienced? 25% 75% Yes No We were encouraged by the response that 75% of those with MS would feel confident talking to their GP about any problems experienced embarrassment can be a real barrier to taking steps to treat and manage bowel problems. However, it is clear that a significant minority of patients do not feel able to raise the issue themselves. As well as undertaking work to encourage patients to feel more comfortable talking to their GP, work also needs to be Once I got over my embarrassment and discussed my bowel problems with a doctor I was referred and supported very well. However, before this no MS doctor or nurse told me it was a possible MS symptom or asked about it specifically, and I didn't know so I didn't get what I needed earlier. Survey respondent 6
done to help GPs feel more comfortable raising the issue with their patients GPs should not rely on patients to raise problems. Recommendations: Public awareness of bowel problems and the impact they have on individuals and society must be raised, with people encouraged to proactively seek help and advice. Healthcare professionals, including GPs, need to offer a proactive approach to bowel management problems, particularly for those people with neurogenic disorders and chronic conditions. 4. In general, have you found the quality of care provided for bowel problems in your area to be: 33% 4% 25% 8% 30% Very good Good Satisfactory Poor Very poor Recommendations: I now have a good regime to control my bowels, but it took quite a long time to get to this point. It would have been good if I could have been warned earlier how my MS could affect my bowels, as I didn't connect my alternating constipation and diarrhoea with my MS for some time. Survey respondent This question received a wide range of responses 34% of respondents rated care as poor or very poor, 38% rated care as good or very good, and 28% rated it as satisfactory. This suggests that there are significant variations in the quality of bowel care across the country. We do not find this surprising when considering the information we received on whether or not CCGs had referral pathways for bowel problems this also suggested a good deal of inconsistency. Guidelines and clinical pathways need to be in place to improve outcomes for people experiencing bowel management problems, and ensure better consistency across the country. Further research is needed to identify specific CCGs where bowel management care is considered to be poor; such areas need to be encouraged to develop specific strategies to improve the quality of care. 5. What do you think are the biggest barriers to raising the quality of bowel care for people with MS (choose more than one option if you wish)? Increasing the resources of services designed to treat bowel problems such as increased funding or staff? Providing more information and resources for doctors, nurses and healthcare professionals? Providing better advice to doctors and nurses as to who they can send patients to for specialist advice? Increasing the knowledge of patients? Improving the knowledge of doctors, nurses and healthcare professionals? 7
Resources of services for bowel problems Information and resources 19% 19% Access to specialist advice 21% Patient knowledge 22% Professional knowledge 19% 17% 18% 19% 20% 21% 22% 23% The responses received to this question were almost evenly split among the different options for improving the quality of bowel care suggesting that all of these are areas to focus on. Recommendation: Action is needed across a range of areas to raise the quality of bowel care including improving the knowledge of healthcare professionals and patients; ensuring that healthcare professionals have useful information and resources to call on; making sure that all healthcare professionals know where to refer patients for specialist continence advice; and ensuring that continence services have sufficient funding and staff. 8
Overview of views from specialist MS nurses 1. How would you rate your knowledge of the impact of MS on bowel management? 17% 1% 26% 56% Very good Good Satisfactory Poor 2. How often do you actively raise bowel management with MS patients? 2% 98% Often Occasionally 86% of the specialist MS nurses responding to our survey rated their knowledge of bowel management as good or very good, with only 1% rating it as poor, and 0% as very poor. In addition, 98% of the MS nurses who responded to the report said that they frequently raise bowel management with MS patients. This is an encouraging finding, which fits in with the finding from patients that the issue was most frequently raised with them by specialist nurses. While we would note that 43% of the survey respondents with MS did state that the potential for bowel problems hadn t been mentioned to them by doctors or nurses specialising in MS (or indeed any healthcare professional), we find these results very encouraging. The local continence service has a limited understanding of bowel problems with MS and tends to focus a lot of its advice on fibre intake, which isn't always helpful. Survey respondent these resources should they need them. While maintaining and improving the knowledge of specialist staff is important, the responses to these questions suggest that the greatest gains could be made from focusing on improving knowledge of MS and its related problems among non-specialist doctors and nurses. For non-specialist staff, it is even more crucial to have access to referral pathways and resources which help them to manage problems which arise and to know where to find As an example, the MS Trust have produced a resource for non-specialists to help share specialist knowledge which can be found at: http://www.mstrust.org.uk/professionals/practicalguides/bladderbowel/default.jsp. Specific guidance is also available on management of neurogenic bowel dysfunction at http://www.spinal.co.uk/userfiles/pdf/publications/cv653n_neurogenic_guidelines_sept_2012_web _no_crops.pdf. 9
Recommendations: CCGs should take specific steps to improve awareness of bowel management among general staff. This includes bowel management as a general issue, but also specifically for at risk-groups such as people with MS and other neurological conditions. Where resources exist, such as with the MS Trust guide mentioned above, CCGs should ensure that healthcare professionals are aware of these resources and where they can access them. 3. How confident do you feel raising issues of bowel management with patients? 28% 2% 70% Very confident Somewhat confident Not very confident These figures are very encouraging, with 98% of nurses again noting that they feel very confident or somewhat confident in raising bowel issues. As with the questions above, this demonstrates a need to focus on improving the knowledge and skills of non-specialist staff. 4. Does your CCG have a specific referral pathway for MS patients who present with bowel problems? 40% 17% 43% Yes No Don t know 5. Does your CCG provide guidance on how to manage MS patients who present with bowel problems? 36% 28% 36% Yes No Don t know These answers are similar to those which we received through our Freedom of Information requests on referral pathways, the results of which are explored further below. While it is encouraging to see that many MS nurses are proactive in raising bowel problems with patients, and feel confident in doing so, it is concerning that only 28% know of a specific referral pathway and only 17% are aware of specific guidance on how to manage bowel problems in MS patients. It also concerning that a large number of nurses don t know if a referral pathway or guidance exists. 10
Once the issue of bowel management has been raised with patients, there is a need to ensure that healthcare professionals know the best way to follow up on the issue, and who to refer patients to for more specialist care if this is necessary. This will ensure that problems are dealt with as early as possible, that patients will receive any specialist treatment which they need, and that where possible patients can avoid their bowel problems becoming complex and costly to treat. There is a lot of variability in the interest and knowledge of continence advisors in our area. Also getting permission from my manager for my team and myself to attend study days & courses is really difficult. Survey respondent There is a need to ensure that guidelines and clinical pathways are in place to improve outcomes for people experiencing bowel management problems and ensure a consistent quality of care and those working with patients need to ensure that they know how to access these when needed. Recommendations: Guidelines and clinical pathways need to be in place to improve outcomes for people experiencing bowel management problems. All healthcare professionals but particularly non-specialists need to ensure that they are aware of where they can access guidelines and pathways should they need them. 6. What do you think are the biggest barriers to raising the quality of bowel management for MS patients? 0% 5% 10% 15% 20% 25% 30% Clinical knowledge Patient knowledge 20% 21% Lack of referral pathways 17% Lack of guidance 13% Lack of resources within services 24% Other 4% As with the responses to this question from patients, there was a fairly even split in the answers received with a lack of resources being highlighted as the single biggest concern. It is clear that priorities also include improving clinical and patient knowledge, as well as improving the quality and consistency of referral pathways and guidance. Recommendation: Action is needed across a range of areas to raise the quality of bowel care including improving the knowledge of healthcare professionals and patients; ensuring that healthcare professionals have useful information and resources to call on; making sure that all healthcare professionals know where to refer patients for specialist continence advice; and ensuring that continence services have sufficient funding and staff. 11
Do clinical commissioning groups have referral pathways in place? Alongside the survey results, we used Freedom of Information requests to CCGs to find out the answer to the following questions: Does a specific referral pathway exist for patients presenting to their GP with faecal incontinence? Does a specific referral pathway exist for patients presenting to their GP with chronic constipation? Does a specific referral pathway exist for patients presenting to their GP with urinary incontinence? Are GPs within your CCG are given specific guidance on bowel management for patients with (a) Multiple Sclerosis (b) other neurological conditions? We sent FOI requests to 212 CCGs, of which 132 responded. Of these: 29 CCGs (22%) had all the specific referral pathways which we asked about. 38 CCGs (29%) had some of the pathways which we asked about, but not all of them. 65 CCGs (49%) had no specific referral pathways. Only 18 (13%) stated that GPs are given specific guidance on bowel management for patients with Multiple Sclerosis or other neurological conditions. So almost half of CCGs who responded have no specific referral pathways, and the vast majority do not have referral pathways covering faecal incontinence, chronic constipation, and urinary incontinence. Only 13% of CCGs provide GPs with specific guidance on bowel management for patients with neurological conditions. It is essential that clear and effective referral pathways and clinical guidelines are available for GPs and nurses, so that once they have been able to discuss bowel management with patients they know where to refer them for the best quality care. 12
Conclusion and summary of recommendations The findings of our survey provided some encouragement in relation to bowel management for MS patients with most patients saying that they would feel comfortable raising bowel management with healthcare professionals, and the majority of MS nurses saying that they had a good knowledge of bowel management and would be comfortable raising the topic with patients. Nevertheless, the research has identified a number of areas where further work is needed to ensure that people with MS who experience bowel problems can consistently access good quality care, with specialist bowel management advice available where needed. In particular, there needs to be a focus on improving the knowledge and skills of non-specialist healthcare professionals who will be coming into contact with MS patients and other patients who are experiencing problems with their bowels. We need to ensure that healthcare professionals feel comfortable raising the topic particularly with at-risk groups and that once they have done so they can access advice on how to treat patients, as well as knowing where best to refer patients for further care. In summary, we would make the following recommendations: Action is needed across a range of areas to raise the quality of bowel care including improving the knowledge of healthcare professionals and patients; ensuring that healthcare professionals have useful information and resources to call on; making sure that all healthcare professionals know where to refer patients for specialist continence advice; and ensuring that continence services have sufficient funding and staff. All people who are newly diagnosed with MS should be given specific information on how the condition could impact on their bowel and advice on what to do should problems arise. Bowel problems are more likely to occur later in MS, so healthcare professionals should ensure that the issue is raised periodically and that people know where to go for further information if problems arise. Healthcare professionals, including GPs, need to offer a proactive approach to bowel management problems, particularly for those people with neurogenic disorders and chronic conditions. Guidelines on MS need to include specific information on bowel management. Public awareness of bowel problems and the impact they have on individuals and society must be raised, with people encouraged to proactively seek help and advice. Healthcare professionals, including GPs, need to offer a proactive approach to bowel management problems, particularly for those people with neurogenic disorders and chronic conditions. Guidelines and clinical pathways need to be in place to improve outcomes for people experiencing bowel management problems, and ensure better consistency across the country. Further research is needed to identify specific CCGs where bowel management care is considered to be poor; such areas need to be encouraged to develop specific strategies to improve the quality of care. CCGs should take specific steps to improve awareness of bowel management among general staff. This includes bowel management as a general issue, but also specifically for at risk-groups such as people with MS and other neurological conditions. Where resources exist, such as with the MS Trust guide mentioned above, CCGs should ensure that healthcare professionals are aware of these resources and where they can access them. All healthcare professionals but particularly non-specialists need to ensure that they are aware of where they can access guidelines and pathways should they need them. 13
Appendix 1: Case study bowel management through anal irrigation Eleven years ago, Kerry Lloyd was diagnosed with Multiple Sclerosis. One of the symptoms was a serious bowel condition which threatened to over-shadow her family life with partner David and daughter Bethany. After trying several treatments without success, Kerry discovered the anal irrigation system Peristeen, which is particularly suitable for those with neurogenic bowel dysfunction caused by conditions such as MS. Adapting to the unpredictability MS brings was a real challenge. We all have goals and aspirations especially for our children. Once I was diagnosed, those aspirations seemed to disappear and the goalposts were changed. Mental and physical fatigue just meant I couldn t keep pace with family life. On top of that, I received no useful advice on my bowel condition. The consultant would ask how s the water works never how s the poo? It was very frustrating. Even my Continence Advisor would just say let s try this now and offer yet more medication. Some treatments really didn t suit me and even compounded my condition. This went on for almost two years. Thankfully I discovered Peristeen quite accidentally when I attended a conference for the MS Society. After talking to the advisor on the Peristeen stand I took the information to my GP and Continence Advisor, neither of whom knew much about the product. I wasn t going to take no for an answer, however, as nothing else was working. So they agreed I should give it a go. When my Peristeen kit first came through the door it was quite daunting, as there seems to be so many parts to it. So what I would say to anyone else is read the laminated instruction mat first, it gives really clear instructions. The kit covers a lot of diverse needs, so some items you may not even need. After a visit from my Peristeen Advisor, it took about a week before I got into the routine of it all. It made such a difference. Within a couple of weeks I was able to go out for my first family meal in absolutely ages. It was astounding how quickly life became easier with Peristeen and without the constant worry of where the nearest loo was. I m a different person with Peristeen. My confidence is back, my social life is better, we have people round and the family can go on holiday. In fact, Peristeen is packed before the sun lotion. It means I can eat what I want without worry and still fit in my bikini come the second week of the holiday! All I do is take a spare water bag just in case and always use bottled water. When it comes to cleaning, we have Peristeen days in our house so everyone knows what s happening. It adds about 20minutes to my normal bathroom routine. That s it. If I was to advise anyone in my situation I would say give Peristeen a go. It s just warm water, not drug based and you ll know very quickly whether it s right for you. 14
Appendix 2: Declaration of Bowel Independence, July 2013 An estimated one in ten British people are affected by some form of bowel problem. This Declaration, launched to mark Bowel Independence Day on the 4 th July 2013, sets out some practical steps designed to help improve the quality of life, independence, and wellbeing of people who live with a bowel problem. Bowel problems can affect men and women of all ages, and embarrassment means that many people struggle to speak about these problems even to their GPs. We are working to bring about changes in policy which will help people regain their independence and improve their dignity and quality of life. This Declaration highlights areas where improvement is needed and suggests some practical steps which could help achieve this. Public awareness of bowel management problems and the impact they have on individuals and society must be raised Unsurprisingly, most people don t like to discuss their bowels. But when up to one in ten British people have to deal with some form of bowel dysfunction, there is a need to break down the taboos which stand in the way of people taking back control. Through Bowel Independence Day, Coloplast and the individuals and organisations we are working with hope to raise public awareness about this issue and encourage people to discuss problems with their GP, nurse or another healthcare professional, and find solutions which allow them to live a more independent life. GPs need to offer a proactive approach to bowel management problems, particularly for those people with neurogenic disorders and chronic conditions While everyone can be affected by bowel problems, it is a more common problem for those with spinal injuries or other neurological conditions such as MS, Parkinson's disease, spina bifida, etc. GPs need to actively raise bowel management with at-risk groups, and encourage people to be open and honest about any problems they are facing. We are keen to work with professional bodies to look at how GPs could be encouraged to be proactive on this issue for example by sharing best practice or through the inclusion of incentives in the Quality and Outcomes Framework. Guidelines and clinical pathways need to be in place to improve outcomes for people experiencing bowel management problems Once people have discussed their bowel problems with GPs or nurses, it is essential that comprehensive and up-to-date referral pathways and clinical guidelines are available. We want to work with stakeholders such as the National Institute of Health and Care Excellence (NICE) to ensure that information on all available options for bowel management are included in the clinical guidance and quality standard on faecal incontinence. We are also keen to work with professional bodies and clinical commissioning groups to ensure that the referral pathway for patients with bowel problems is clear and effective. People with bowel management needs should have access to specialist healthcare provision such as continence services While increasing conversations with GPs and practice nurses is an excellent starting point, ultimately many people will need access to specialist continence advice services to ensure that they can regain their independence. As well as improving and simplifying referral pathways it will also be important to raise people s awareness of the fact that they can self-refer to continence services if they would find this helpful. 15