BBUK October Newsletter 2018 by Disabled Living

Bladder & Bowel UK Newsletter October 2018

NEW BBUK JUST CAN'T WAIT CARDS Request your free cards

PSYCHOLOGICAL AND PHYSICAL ENVIRONMENTAL FACTORS IN THE DEVELOPMENT OF INCONTINENCE CHANGING PLACES FACILITIES IN THE UK

Charity number: 224742

Explore Our Key Features Just Can't Wait Cards by BBUK.................................................................................................................5 Bowel Education Day 2018 feedback........................................................................................................6 Changing Places facilities in the UK.........................................................................................................10 Psychological and Physical Environmental Factors in the Development of Incontinence in Adults and Children....................................................................................................................................................12 Browse the Continence Product section on Disabled Living's Supplier Directory....................................15 Visit BBUK's online shop..........................................................................................................................18 Free online course on continence care....................................................................................................20 See where our latest Loo of the Month is.................................................................................................21

Assessment and Treatment of Nocturnal Enuresis in Children and Young People

Nocturnal enuresis (bedwetting) is one of the most common chronic conditions affecting children and young people. Despite it affecting quality of life for children and their families and the fact that there are often comorbidities, which often resolve with successful treatment it is still not widely understood. Healthcare professional training rarely covers any childhood continence conditions. As a result families are often given conflicting advice or suggestions are made that are not evidence-based. The situation for many has deteriorated with the change in commissioning for school nursing, with clinics having been lost.

With so many pressures on time and resources, it is difficult for healthcare professionals to dedicate time to learning about a condition which remains largely hidden. However, there are resources available to help. With respect to bedwetting, Bladder and Bowel UK have several resources available in both the children and young people and professional’s section of the website at www.bbuk.co.uk. There is lots of information for children and families at www.stopbedwetting.org.

In addition, Davina Richardson has had a continuing professional development article published. ‘Assessment and Treatment of Nocturnal Enuresis in Children and Young People’ is available from the RCNi journal Nursing Children and Young People, September 2018 (volume 30, number 5 pages 40-46) and online at https://journals.rcni.com/nursingchildren-and-youngpeople/cpd/assessment-and-treatment-ofnocturnal-enuresis-in-children-and-youngpeople-ncyp.2018.e1073/abs

at ie nt s

NE W p Fo ry ou r

BBUK Just Can't Wait Cards

FREE pocket sized plastic card BBUK confidential helpline Available from BBUK - a charitable service Order your supply of cards from: bladderandboweluk@disabledliving.co.uk

www.bbuk.org.uk

Registered Charity No: 224742

Bowel Education Day Feedback

The Bowel Education Day in September has become a regular, well attended event in BBUK ‘s annual educational calendar. The day was well attended and brings together a variety of health care professionals, including General Nurses, Specialist Nurses, Pelvic Floor Specialist Physiotherapists. Delegates attended from the local NW area and further afield including NW and NE regions, The Midlands, Kent, London and Glasgow. • The aim of the day, was to improve knowledge to support our standards of practice and, continue (through learning and networking), to enhance the care we deliver to the people we all see or come into contact with, who either have, or look after someone with bowel problems. • BBUK are also supported at this event by many companies who exhibit, providing information, advice and updates on their products. We are very grateful to the companies for supporting Bladder and Bowel UK education events and it allows mutual networking or updating between clinicians and commercial colleagues.

• The exhibition and company representative s provides delegates an opportunity to looking at new products, reviewing current products and update knowledge on what is available to help treat and manage people with bowel and skin care problems. A final thank you goes to all the speakers who support this event and provide informative clinical updates. Joanne Hoyle, BBUK Specialist Nurse chaired the sessions and welcomed everyone to the day. The first speaker was Sandra Blythin (who works along side colleagues, Zoe Crook, Julie McAteer) Specialist Physiotherapists in the Healthy Bowel Clinic at Aintree.

The aim was to provide more effective, consistent management of patients presenting with a primary diagnosis of constipation and to promote a more cost effective way of managing these patients and avoiding unnecessary admission.

Benefits for patients and staff include: Sandra’s presentation was entitled “Innovations in Constipation Management”. Discussing how the Healthy Bowel Clinic (HBC) is a specialist clinic, that treats patients presenting with functional bowel problems (constipation, faecal incontinence and obstructed defecation) in an outpatient setting. The service offers specialist assessment, medication management, lifestyle advice, pelvic floor re-education, Biofeedback, Posterior Tibial Nerve Stimulation, rectal irrigation and cognitive behavioural therapy. The team won this year's Bowel Award, for the pilot study work they have undertaken “A pilot study to investigate the success of managing patients with constipation to prevent hospital admission. The aim of their study was to provide more effective, consistent management of patients presenting to AED with a primary diagnosis of constipation and to promote a more cost effective way of managing these patients and avoiding unnecessary admission. Sandra provided delegates with an out line of the project. Following data collection regarding admission to hospital, with a primary diagnosis of constipation, the team made a successful application internally, to support an 12 month pilot project, to develop and implement a new pathway, linking Accident and Emergency Department (AED) and the HBC specialist services to manage patients presenting to AED with a primary diagnosis of constipation.

• Patient’s dignity more easily maintained as they have support to manage their constipation in their own homes • After improvement in their constipation symptoms, patients will be assessed and managed to prevent further admissions with constipation. • Adequate management will improve quality of life. • AED staff will have a specialist outpatient clinic to refer these patients to appropriately • Patients will have a quicker journey through AED freeing up AED resources and reducing the burden on bed stay • Reduction of admissions will increase ward staff resources This type of care pathway is not available in any other trust. BBUK were thrilled to welcome Carol Adcock BSc (HONS) SCI Nurse Specialist and Gary Dawson, Peer Support Officer both from the NW, Spinal Injuries Association. Carol provided delegates with an over view and refresher of the different presentations of neurogenic bowel and informed us about the management approaches and interventions to take to manage neurogenic bowel dysfunction. Carol's lecture also covered an over view, current national guidelines, individual assessment and autonomic dysreflexia, a most valuable update for us all.

Gary gave an informative and thought provoking talk, sharing his personal story of his spinal injury and bowel / bladder management and explaining about his role as a peer support officer within the SIA. Jane Fenton Teaching Fellow in Nursing at Keele University and RCN Forum Committee member provided the group with an update on the Lower Bowel Dysfunction including DRE DRF guidelines 2012 that are currently being updated and expected publication early 2019 . Jane provided an overview regarding the current guidelines and updated on progress with the review of the current guidelines.

Jane also took the opportunity to canvas the group for their views on the guidance - Its use in practice - Its use as an educational resource - How it informs practice - Discussion changes to the document and final pointers before publication Discussion and sharing of ideas took place through the session and some valuable pointers were provided by delegates The final speakers of the day were James Waplington & Jane Spencer from South West Yorkshire Partnership Foundation Trust who gave an informative presentation on continence and mental health including constipation and dementia, providing the audience with helpful advice and information regarding the approaches they adopt in practice their assessment and the formula followed. Karen Irwin, Service Manager/Specialist Nurse

Dates for your diary Next year the Bowel Education Day will take place on: Thursday 26th September 2019

Changing Places Facilities in the UK

The Changing Places Consortium launched its campaign in 2006 on behalf of the over 1/4 of a million people who cannot use standard accessible toilets. This includes people with profound and multiple learning disabilities, motor neurone disease, multiple sclerosis, cerebral palsy, as well as older people. To use the toilet in safety and comfort, many people need to be able to access a Changing Places, which have more space and the right equipment, including a height adjustable changing bench and a hoist. Do you have any questions? Send an email to: changingplaces@musculardystrophy uk.org or visit www.changing-places.org for more information. 10

Tickets Now Available for Kidz to Adultz North

For full information about the event â&#x20AC;&#x201C; exhibitors, seminars, activities and much more please click here.

Psychological and Physical Environmental Factors in the Development of Incontinence in Adults and Children: A Comprehensive Review

Psychological and Physical Environmental Factors in the Development of Incontinence in Adults and Children: A comprehensive review. Von Gontard A, De Jong TPVM, Badawi JK, O’Connel KA, Hanna-Mitchell AT, Nieuwhof-Leppink A, Cardozo L (2017) Journal of Wound Ostomy and Continence Nursing 44, 2, 181-817 This article is interesting, because of the unusual approach of considering environmental influences on the development of incontinence, across the full spectrum of ages. Readers will be aware that the majority of research is focussed on the genetics and biology of incontinence, with little heed having been paid to environmental factors. However, von Gontard et al acknowledge the complex interaction of risk and protective factors that impact on the maintenance of continence or development of incontinence, but cite studies of twins, which suggest that the environment does have a role. The authors of this paper conducted a literature search using the terms ‘incontinence’, ‘environment’ and ‘children’ as well as ‘incontinence’, ‘environment’ and ‘adults’ and eliminated any studies that referred to surgical interventions. Studies from as early as the 1960s were included. Von Gontard et al found that for children and young people, the lack of access to toilets, especially in schools; ignorance; stigma; embarrassment; poverty and living away from a family environment (e.g. in residential

care, such as an orphanage) increased likelihood of incontinence. A link with obesity with incontinence in children has also been indicated. Continuation of incontinence or relapse were found to be linked to stressful life events, particularly parental separation or divorce, but also starting school or the arrival of a new baby in the family. No link was found between stress and primary nocturnal enuresis, although it was noted that treatment programmes for children with incontinence that persisted despite treatment were often more successful if they included techniques to reduce stress and improve relaxation.

Although soiling has been reported where children have experienced abuse, the prevalence was similar to that occurring in children who had behavioural disorders. Von Gontard et al acknowledge that the relationship between trauma and incontinence is poorly understood, with more research required.

One study cited reports that families where children experience daytime urinary incontinence, especially as a result of voiding postponement, are more likely to have dysfunctional relationships. Other studies indicate that mothers of children with incontinence have poorer quality of life and higher anxiety than mothers whose children are continent. Furthermore, a study by Joinson et al (2008) found maternal depression and anxiety increased the risk of later daytime wetting and soiling in their children. There is also evidence that early, active toilet training has no influence on attainment of continence by age of five (Largo et al, 1996), but late toilet training may increase likelihood of lower urinary tract symptoms (Joinson et al 2009; Yang et al, 2011) .

Some environmental issues associated with incontinence were common to adults as well as children. These included restricted access to clean, safe toilets and reduced opportunities to void, resulting in poor voiding postures (e.g. women not sitting correctly), premature or infrequent voiding and bladder distension. Nguyen et al (2011) are cited as concluding that stress incontinence in women was more likely to be due to environmental risks, than genetic influences. However, another study by Buchsbaum et al (2005) concluded that vaginal birth was not related to incontinence, but genetic influences were more important than environmental ones.

However, Buchsbaum et al only included 101 women and is controversial, as there is evidence of pelvic floor damage following vaginal birth resulting in incontinence. A literature search that included ‘environment’ and excluded surgical treatments may not have produced a complete picture, which should be considered when evaluating its conclusions. Night or shift working was considered a factor as it changes the secretion of melatonin and this was thought to impact on detrusor muscle dysfunction. Furthermore a study by Dumont and Paquet (2014) suggested that melatonin production reduced progressively with night working and another by Morrissette (2013) suggested that shift workers ‘...develop desynchronisation of their molecular clock influencing smooth muscle function, mood and alertness.’ Furthermore, it is suggested that night work and change in exposure to light with increased time indoors and use of energy efficient lighting and electronic devices may accelerate development of bladder problems by distorting circadian rhythms (Bonmati-Carrion et al, 2014). Lifestyle influences on incontinence included obesity, constipation, high impact sports and eating disorders. While post traumatic stress disorder was not found to be an influence on incontinence in children, the prevalence of LUTS was higher in war veterans and in survivors of abuse in childhood. There was also found to be a link between anxiety, depression and incontinence. Von Gontard et al highlight that most of the research to date has focussed on risk factors for incontinence in adults and children. More work is needed on environmental contributors to incontinence in all ages, but also on the factors that may increase resilience and protection against incontinence.

Continence services should routinely consider environmental impacts on clients and make suggestions on how these can be mediated. In addition, we need to continue to raise awareness of the importance of good toileting and drinking habits, particularly in schools and work places and highlight the impact of lack of exercise and unhealthy weight.

Davina Richardson, Children's Specialist Nurse References Bonmati-Carrion MA (2014) et al Protecting the melatonin rhythm through circadian healthy light exposure Int J Mol Sci 15 23448 -23500 Buchsbaum G (2005) Urinary incontinence in nulliparous women and their parous sisters Obstet Gynaecol 106 1253 – 1258 Dumont M & Paquet J (2014) Progressive decrease of melatonin production over consecutive days of stimulated night work Chronobiol Int 10 1231 – 1238 Joinson C et al (2008) Early childhood risk factors associated with day-time wetting and soiling in school-age children. Journal Pediatric Psychology 33 739 – 750 Joinson C et al (2009) A prospective study of age at initiation of toilet training and subsequent daytime bladder control in school-age children J Dev Behav Pediatr 30 385 – 393 Largo RH et al (1996) Does a profound change in toilet training affect development of bladder and bladder control? Deve Med Child Neurol 38 1106 – 1116 Morrissette DA (2013) Twisting the night away: a review of the neurobiology genetics, diagnosis, and treatment of shift work disorder CNS Spectr 18 (suppl 1) 45- 53 Nguyen A et al (2011) Nongenetic factors associated with stress urinary incontinence Obstet Gynecol 117 251 – 255 Yang S et al (2011) Early initiation of toilet training for urine was associated with early urinary continence and does not appear to be associated with bladder dysfunction. Neurourol Urodynam 30 1253 – 1257

World Toilet Day Monday 19th November

Taking action to ensure that everyone has a safe toilet by 2030

For more information visit: www.worldtoiletday.info/wtd2018/

Continence Product Section of Disabled Living's Supplier Directory

There is a section on the Disabled Living Supplier Directory dedicated to continence and stoma products. In addition there are a wide range of categories providing information about companies and organisations that provide equipment, products and services to support disabled children, adults and older people.

Access to the Supplier Directory is via the right hand side of the BBUK website.

This month we welcome the following companies to the directory:

https://supplierdirectory.disabledliving.co.uk/category/continence-stoma-products/

Stakeholder Invitation: Public Involvement: Opportunity to Take Part in Research

Does your child experience constipation or did you personally experience childhood constipation? If so, then we would really like to hear from you. We want to bring together as much information as we can about the best ways to manage childhood constipation. This will help us make sure that health professionals and parents know what treatments might work best for a child with constipation.

We will bring this information together by doing a â&#x20AC;&#x153;systematic reviewâ&#x20AC;?. A systematic review is a type of research study which finds and brings together published evidence to answer a question. To make sure that our systematic review answers questions which are important to carers/family of all children with constipation and to young people who had childhood constipation, we want to involve people with lived experience in our project. If you live anywhere in the UK, and have experience of childhood constipation, then your experiences are important to us.

What will I have to do if I take part? You will need to speak to us or alternatively, you could write to us. You can do this by either: Coming to a meeting at Glasgow Caledonian University on 8th November 2018, 11:00 to 13:00. Arranging to speak to us by telephone or Skype. Sending an e-mail to us. We would really like to know about your experience, and how you dealt with constipation and what was important to you.

We would also like to get your ideas and opinions about what information we should include in our systematic review, and what you think might be the most useful way to bring this information together. We might ask you if you would read and comment on our plans for our review, but you would not have to do this if you did not want to. Will you pay my expenses if I come to the meeting? Yes; we would pay your travel expenses and/or childcare costs to come to the meeting. We would ask you to keep any receipts. For any phone calls that need to take place, we would call you so that you did not incur any call charges. What happens after the initial meeting/chat? We are going to write a short plan and apply for some money to fund our project. We are going to submit this to the National Institute for Health Research (NIHR), who have asked for research plans on this topic. You can find more information by clicking on the following link: NIHRlink.

If our project is chosen to be funded, then we will carry out the planned systematic review. If our project is not chosen to be funded, then we will not do any more on this. What happens if your systematic review is funded? Having people with experience of constipation involved in our review is very important to us. If our planned systematic review is funded, we plan to set up a group of around 10-12 people who can give us guidance, and help us produce the review. You could choose to be part of that group if you wanted to. We would give you information about what people in that group would do to help you make your decision. This would include information about meeting dates, and payment of expenses, as well as what the group would do to help produce the review. How do I get in contact? If you are interested in speaking to us about our project, or would like to find out more information, then please contact Lorna Booth by telephone: 0141 273 1358 or by email: success@gcu.ac.uk. We look forward to hearing from you.

Shop online with Bladder and Bowel UK for continence products and equipment to make life easier ...in partnership with

What's the advantage? The main advantage of purchasing via the Bladder and Bowel UK website, is the opportunity for you or your clients to speak to Continence Specialists for free impartial help and advice, ensuring unnecessary purchases are not made.

With over 250,000 items in stock at competitive prices, we are offering you choice from a wide range of manufacturers including mobility aids, daily living products, and continence suppliers together with telecare and telehealth equipment

Web: www.bbuk.org.uk/online-shop Tel: 0161 607 8219 Charity number: 224742

Joanne Hoyle's First Experience at Disabled Living's Annual Meeting

Joanne had the pleasure of attending Disabled Living's Annual Meeting on Friday 12th October. BBUK is an active part of Disabled Living, therefore I was very happy to attend this year's Annual Meeting at the Yang Sing Cathay, Trafford Centre. This event gave an overview of the last 12 months work and recognition of the charity's achievements.

A couple of films and a photo presentation discovering the charity's archive were displayed on the screen The films were linked to the charity's heritage project 'From Donkeys to Innovators: 120 Years of Disabled Living' showcasing the history of the charity including experiences of people who were children who remembered the charity many years ago when they were inpatients at the Children's Orthopaedic Hospital in Marple. The films show the progress made in the opportunities and treatment over the years of individuals with disabilities and how society has changed its approach to individuals. Visit Disabled Living's YouTube channel to view the different films that have been created. The meeting gave me the opportunity to discuss BBUK's work on a day to day basis.

It was great to meet a few of the trustees who support the charity and understand their roles.It was also interesting to see their reasons behind making the decision to support the charity. It was great to explain how individuals benefit from our helpline, training and our representation on national groups. Also, it was beneficial to help those not directly involved in healthcare to understand the work of specialist continence services and how we link with others for the good of excellence in patient care. Always flying the flag for the speciality! Learn more about Disabled Living's heritage and plans for the future here. Joanne Hoyle, Continence Specialist Nurse

Association for Continence Advice Launches a Free Online Course on Continence Care

The Association for Continence Advice (ACA) is a multi-professional organisation, whose membership consists of health and allied care professionals who are working in, or have an interest in bladder and bowel management. The ACA’s key objectives are leading educational activity, maximising evidence-based continence care and promoting safe, effective continence services. These objectives are achieved in a number of ways, including an annual national conference, local branch meetings and study days, a newsletter that is disseminated to members four times a year, a website and other publications. The latest project from the ACA is a Massive Open Online Course (MOOC). A MOOC is a course that is made available, free of charge, via the internet, so it is available internationally to a large number of people. The course, alongside many others on a wide variety of subjects, is provided from an internet based platform called FutureLearn. It is expected that the ACA MOOC, ‘Understanding Continence Promotion: Effective Management of Bladder and Bowel Dysfunction in Adults’ will run at least twice a year and registration for the first course is

now open. The course will begin on 15th October. Free registration with FutureLearn will be required for people to be able to access the course materials. Anyone can register for the MOOC and they can then work through it, at any time convenient for them, day or night. The course materials will remain available for nine weeks. For those who choose, there is the option to upgrade, to have permanent access to course materials. In addition, those who upgrade receive a Certificate of Completion. Upgrade costs £52. Members of the ACA will be able to upgrade free of charge – information on how to do this is provided on the Course Information Webpage below. www.futurelearn.com/courses/understandin g-continence-promotion#sectionrequirements

Loo of the Month - Austria

Old wooden shepherd toilet on a highland pasture with Alpine mountain landscape in Western Carinthia, Austria. 21

Disabled Living's Services Bladder and Bowel UK is a service of the charity, Disabled Living a charity which provides impartial information and advice about products, equipment (assistive technology) and services for disabled children, adults, older people, carers and the professionals who support them. We have a range of services which you can access via our helpline, through the website or at our Kidz to Adultz Exhibitions.

Watch Our Donkeys to Innovators Film

Equipz The team comprise occupational therapists, trusted assessors, moving and handling specialists, physiotherapists, nurses, continence specialists who together with knowledgeable information co-ordinators offer practical solutions to what may seem like unmanageable problems. The staff, respond to enquiries throughout the UK, primarily via our helpline and website, with some people opting to make an appointment to visit the Disabled Living Centre based in Manchester for a free equipment assessment. Helpline: 0161 607 8200 Bladder and Bowel UK The team provide information and advice for children, young people and adults with Bladder and Bowel problems. We provide a confidential helpline managed by a team of specialist nurses and knowledgeable information staff. In addition, the website offers a wide range of downloadable free resources. Helpline: 0161 607 8219 Kidz to Adultz Exhibitions Disabled Living organise the largest FREE UK exhibitions totally dedicated to disabled children, young adults, their families, carers and the professionals who support them. With over 100 exhibitors at each event, offering a ’One Stop Shop’ for equipment products and services to enhance the quality of life. We deliver 5 events throughout the UK in: Farnborough, Bristol, Coventry, Manchester and Edinburgh. Training Disabled Living provides a comprehensive training programme for professionals and carers. Most of our courses are accredited by Open Awards and others provide CPD opportunities. Our training courses can be ‘tailor made’ to suit your organisations requirements and can be delivered throughout the UK for more detailed information on the courses we provide please visit the Disabled Living website.

www.disabledliving.co.uk

0161 607 8200

Get in Touch with Us

For more information please visit: www.bbuk.org.uk

Bladder & Bowel UK Head Office - Disabled Living, Burrows House, 10 Priestley Road, Wardley Industrial Estate, Worsley, Manchester M28 2LY Tel: 0161 607 8200 Email: info@disabledliving.co.uk Website: www.disabledliving.co.uk