Bladder and Bowel UK August 2018 Newsletter

Bladder and Bowel UK Newsletter August 2018

RESOURCES TO SUPPORT SAFE BOWEL CARE A patient safety alert

RE-VALIDATION & CPD New course and final programmes announced

RAISING AWARENESS OF BLADDER AND BOWEL PROBLEMS IN TEENAGERS DO YOU KNOW WHAT THE APPG IS? Joanne Hoyle will tell you more

Charity number: 224742

Explore our key features Raising awareness of bladder and bowel problems in teenagers..........................................................4 Re-validation & CPD - new course and final programmes announced..................................................6 Resources to support safe bowel care...................................................................................................7 Workshop for healthcare professionals in the continence field..............................................................9 Urology Awareness Month....................................................................................................................10 BBUK Summer Reps Day at Burrows House.......................................................................................12 Excellence in Continence Care.............................................................................................................15 Do you know what APPG is?................................................................................................................17 Loo of the Month...................................................................................................................................19

Weatherwell Roofing Are Riding to Support Bladder & Bowel UK Weatherwell Roofing have kindly decided to raise money for Bladder & Bowel UK, who are part of Disabled Living. They will be cycling in the Tour de Mon event on Sunday 19th Aug 2018, around Holyhead, Isle of Anglesey. Please support Bladder & Bowel UK via the JustGiving page here.

Raising Awareness of Bladder and Bowel Problems in Teenagers

Bladder and bowel problems are common in people of all ages, but are rarely discussed. This increases embarrassment and anxiety and makes it more difficult for teenagers to ask for help.

For some, wetting or dribbling of urine during the day, bedwetting, constipation and soiling (leakage of poo into the pants) has been a problem throughout their childhood. If this is the case, there can be a feeling that nothing can be done to help.

We know that about 900 000 children and young people have problems with their bladder or bowel. Some teenagers try very hard to hide the problems from family and friends and some have been bullied because of their problems. This results in many feeling socially isolated, unhappy and many don’t seek help. One teenager described the problem in a new report published in March 2018 as “not life threatening, but life ruining” Is there anything I can do to help myself?

There are some things you can do that are good for you, but also might help the problem, although this can take time.

Drinking plenty of water based drinks helps by ensuring that urine (wee) remains dilute and pale. Concentrated urine irritates the lining of the bladder and makes wetting problems worse. Fizzy drinks and drinks that contain 4

Caffeine (tea, coffee, hot chocolate and energy drinks) also irritate the bladder and can make wetting worse, so should be avoided. A good fluid intake can also help prevent wee infections (also known as urinary tract infections or UTI).

Drinking well also helps poos to remain soft and prevents constipation. Constipation can cause bladder problems or make them worse.

Teenage girls should be drinking about 1.5 – 2 litres of water based drinks per day. Boys should be having about 2- 2.5 litres per day.

If you are taking plenty of exercise or the weather is very hot, you should have more than this.

Eating plenty of fruit and vegetables is not only good for health, but helps prevent constipation.

Going to the toilet as soon as you feel the need helps. You may need to ask your school nurse to help you arrange a toilet pass if your school does not let you go when you

need to. Many schools use a ‘time out’ card or ‘medical pass’ so others will not find out about the problem.

Can anything else be done?

Bladder and bowel problems rarely get better on their own, but with the right treatment most can be helped and many can get completely better. The first step is to talk to a health care professional who understands the issues and knows the best route for accessing treatment locally. School nurses usually have a drop-in clinic at school, which teenagers can go to for confidential advice, support and referral on if required. The GP is another person who should be able to provide help and referral. If you don’t understand or are not clear, then don’t be afraid to ask lots of questions. It can help to write down a list of things you want answering before you go to see someone.

When you see a health care professional they may ask you lots of questions about your bladder and bowel and should then be able to explain the problem to you. They should discuss the options with you, so that you are involved in decisions about which treatments to try. Sometimes they may suggest something you have tried before and which did not work then. However, we know that treatments can work that have not worked in the past, so try to keep an open mind.

Further information and getting in touch Bladder and Bowel UK have developed a range of information leaflets about various continence problems and these are all available on our website. The leaflets are in our Children and Young People Resources section.

Davina Richardson, Children's Specialist Nurse

Visit Bladder and Bowel UK's Online Shop

Visit: www.bbuk.org.uk/online-shop/ or call: 0161 607 8219

We are delighted to be working in partnership with Complete Care Shop to provide you with a comprehensive online shopping facility for equipment and products to make life easier.

Complete Care Shop has over 250,000 in stock items at competitive prices offering you choice from a wide range of manufacturers including disposable pads, pants, urinals, bedding protection, disposal and reusable bed and chair pads, wipes, gloves and a whole lot more.

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.

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BBUK Annual Bowel Education Day Tuesday 25th September 2018 Manchester Price: £25 BBUK's Annual Adult Bowel Education Day attracts multi-disciplinary healthcare professionals who work throughout the UK. Attendance at this subsidised training event will support re-validation & CPD. 2018 programme: We are pleased to welcome Specialist Nurse Carol Adcock and Peer Support Officer Gary Dawson, from the Spinal Injuries Association ( SCI) who will be talking about bowel management in SCI and patient experience.

Jane Fenton, Teaching Fellow at Keele University and RCN Continence Forum Committee member will be updating on the RCN guidance lower bowel dysfunction document relating to DRE and DRF. Both these lectures will include discussion regarding the recent publication form NHS improvement, regarding resources that are available to support safer bowel care for patients at risk of autonomic dysreflexia.

James Waplington and Jane Spencer from South West Yorkshire Partnership NHS Trust will be presenting on constipation and dementia, a subject area that has been requested by delegates in previous BBUK study day evaluations and will cover assessment , treatment and management approaches.

A Physio Perspective on Bowel Management – the team form Aintree University Hospitals, NHS FT, are this years BBUK Bowel Award Winners.

Supported by company exhibition

What did last years delegates say?

97%

of last years delegates rated the Bowel Education Day as 'excellent'. This what they said:

"I'm fairly new to my role in continence services and wanted to widen my knowledge."

Staff nurse

"Range of topics very relevant to my practice."

"An informative day.

It was good to network with nurses from other areas."

Clinical Nurse Specialist

Women's Health Physiotherapist "It was an amazing learning curve."

Pelvic Floor Specialist

The cost is £25 payable at the time of booking. If you would like to join us or become a member of our Adult Bowel Education group please email bladderandbowel@disabledliving.co.uk

NHS Improvement Publication - Bowel Care

Resources to support safer bowel care for patients at risk of autonomic dysreflexia

A Patient Safety Alert has recently been issued in July 2018, signposting providers to a number of resources, to support safer provision of bowel care, for patients at risk of autonomic dysreflexia (AD).

Patients with spinal cord injury or neurological conditions may experience neurogenic bowel dysfunction, which often means they depend on routine interventional bowel care, including the digital (manual) removal of faeces (DRF). Some of these patients, especially those with spinal cord injury above T6, are particularly susceptible to the potentially life-threatening condition, autonomic dysreflexia. This can also affect a small number of patients who have sever forms of stroke, Parkinsons, multiples sclerosis, cerebral palsy or spina bifida.

For more information please visit the NHS improvement page.

BBUK have organised an Adult Bowel Education Day with multi-disciplinary speakers. The aim of the day is to provide delegates with a varied clinically bowel focused program of lectures along with expert patient perspective. The day will also provide delegates with an opportunity to update their skills and knowledge, along with confirming good practice. The event will be an opportunity to discuss, share and support each other, regarding what’s happening in practice.

See opposite page for full details.

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BBUK Annual Paediatric Continence Promotion Day Tuesday 16th October 2018 Manchester Price: £25 BBUK's Annual Paediatric Continence Promotion Day attracts multi-disciplinary healthcare professionals who work throughout the UK. Attendance at this subsidised training event will support re-validation & CPD. 2018 topics include: Constipation The Psychological impact of incontinence Working with schools in Durham Enuresis Award winners Using data to support service development This day has a company exhibition with all the latest Children’s and Young People continence products

99%

What did last years delegates say?

of delegates stated attendance at last years event had increased their knowledge This is what they said: "Passionate speakers, breath of fresh air."

"Apart from the actual learning on the day, I have also found out more about other resources to access."

Paediatric Continence Advisor "Excellent day as always, good value, enjoyable interesting speakers & topics ."

Staff nurse

Children's Continence Nurse

Staff Nurse

"This study day was inspiring & will change any practice."

Paediatric Nurse Continence Advisor

Pelvic Floor The cost is £25 payable at the time of booking. If you would like to join us or become a member of Specialist our Adult Bowel Education group please email bladderandbowel@disabledliving.co.uk

NEW COURSE!

In the Dock: A Workshop for Healthcare Professionals

Your competency is under question Your record keeping is being scrutinised Healthcare professionals in the continence field - this includes you!

There are different scenarios which could end up with someone being summonsed as a witness.

Whether it is a coroner's court or a civil negligence case this workshop will help you to understand what will be required and how to improve your practice so that a court appearance will be less intimidating. Using real life scenarios, expert witnesses and solicitors will lead you through the process and highlight areas you can improve and share good practice in.

On this interactive day you will work on a project which culminates in you appearing in the dock in front of a Judge and Jury. Find out how to protect yourself in your reporting and recording at work, what your responsibilities are and how to be confident in your work and not be afraid of being taken to court.

Please visit our website to book your place and for more information.

If you require more information please email: training@disabledliving.co.uk.

Date: Wednesday 13th February 2019 Venue: Manchester Price: Cost: ÂŁ35 + VAT (includes light lunch and refreshments) 9

This September Is...

Do You Know About the Urological Health Campaign 2018?

We are supporting MediaplanetUK’s Urological Health campaign, which is launching on the 24th September for Urology Awareness Month. The campaign will have editorial insights from EAU, BAUN, BAUS, the Urology Foundation and TalkHealth.

The aim of the campaign is to raise awareness around urological conditions, the innovations in treatment, the importance of diagnosis and prevention of all urological conditions.

This will be launching in the Guardian as a 12 page report and also online at healthawareness.co.uk.

10,000 people are diagnosed each year with Bladder

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Cancer, and it is the 5th most prominent cancer in the western world.

Thus, the campaign wants to raise awareness of symptoms and the innovations in treatments to educate those suffering but also, help the general public when looking for signs and symptoms.

If you want to learn more about the campaign and the opportunities for inclusion, then you can reach out to the project manager, Roz Boldy on roz.boldy@mediplanet.com. Keep an eye out for the report and feel free to share the message.

Summer Reps Day at Burrows House

The BBUK team were delighted to host a successful Summer Company Representatives day in July to catch up with colleagues from industry, looking at new products, services and innovations. Likewise it gave the company personnel a chance to update on what is happening at BBUK and Disabled Living, alongside understanding services and support available from the organisation.

By hosting the day at Burrows House the team were able to show off the product and literature area that has a wide display from many companies. It was a great opportunity to explore areas of partnership working between BBUK and industry. Really positive conversations and discussions took place in an informal setting with tempting refreshments, cupcakes and strawberries to mention but a few.

We are always looking for new ways of working with partners, updating our services and supporting developments within continence care and products.

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We, also, welcome visitors to our continence centre at Burrows House in Worsley to look at the wide range of products and product literature we have access too. Also, to understand how as a team we can support healthcare professionals in their day to day jobs. Please feel free to ring us on 0161 607 8219 to book an appointment.

Thank you to all the companies who managed to attend and make the day a great success.

We will be hosting another company day later in the year, watch this space!

Joanne Hoyle, Continence Specialist Nurse

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:

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An Antimicrobial Urinary Catheter for Long-Term Catheter Users

Dr. Katherine Belfield (University of Nottingham, Professor Roger Bayston (University of Nottingham), Mr. Richard Parkinson (Nottingham University Hospitals NHS Trust) Those with spinal cord injury, multiple sclerosis, chronic urinary retention or severe incontinence may rely on long-term (≼28 days) indwelling catheterisation to manage their bladder. Indwelling urinary catheter users, particularly long-term users, are at increased risk of repeated infections and catheter blockages. This results in repeated courses of antibiotics and their side effects including development of antimicrobial resistance.

At the University of Nottingham we have developed a urinary catheter in which three antimicrobials are embedded throughout the catheter material, including the balloon. The unique method of impregnation and the use of the three drugs protect against bacteria for 12 weeks, including resistant bacteria such as MRSA and carbapenemase-producing E. coli in the laboratory.

We are now applying for funding for a clinical trial with trial centres throughout the UK to understand the ability of the antimicrobial impregnated catheter to prevent symptomatic CAUTI. We need the help of long-term indwelling urinary catheter users to share their experiences with infection through an anonymous online survey.

The link is here:

The catheter also prevents colonisation by Proteus mirabilis, the common cause of mineral encrustation and catheter blockage. By using a combination of three antimicrobials the bacteria are less likely to develop resistance. A singlecentre study of this antimicrobial urinary catheter users at Nottingham University Hospitals NHS Trust showed that it was safe and well-liked by patients.

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https://nottingham.onlinesurveys.ac.uk/anti microbial-urinary-catheter-user-survey We are pleased to be working with Bladder and Bowel UK and hope to deliver a catheter that reduces CAUTI and blockage.

Dr Katie Belfield, Research Assistant

Excellence in Continence Care - Practical Guidance for Commissioners, and Leaders in Health and Social Care

This guidance is a refreshed and updated e-resource that builds on an earlier publication from November 2015. It is intended to assist commissioning discussions for those developing high quality community continence services and provides a valuable supporting resource for the wider Sustainability and Transformational (STP) planning process.

The key recommendations also fit within the RightCare model of service provision and the ‘Leading change – adding value’ service framework.

To mitigate the risk of poor care and inappropriate referrals the commissioning of integrated care pathways is strongly recommended.

The guidance covers children, young people and adults and includes a section on transition. Providing appropriate services for children with bladder and bowel problems is of extreme importance. Managing and resolving these problems in a timely manner can go a long way in preventing these problems having an impact into adulthood.

The development of integrated care pathways for children and young people, as part of supporting service developing, is something that Bladder and Bowel UK is currently involved with. If any areas feel they would like any extra support in developing their service, in line with current recommendations, then please do not hesitate to get in touch and we would be happy to see what we can do to help.

As well as recommending the commissioning of appropriate services the document also looks at the cost of poor continence care – not only in terms of the detrimental effect on the individual but also the financial cost.

For more information please visit england.nhs.uk/commissioning/continence June Rogers MBE, Children's Specialist Nurse

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Standardising Urine Collection and Testing

1 in 4 people in the UK will not receive an accurate diagnosis or correct treatment from their doctor because the urine sample - clinically known as a specimen - they provided was unreliable or contaminated. Please use the link below to find out more about the campaign for standardising clinical practice around the collection and testing of urine. For more information please visit: https://www.mustcampaign.org/

Good Morning Britain Launch Cards for the Birth of Premature Babies Just for info

Good Morning Britain's weather presenter, Laura Tobin has a daughter who was born three months early. She along with many other parents across the UK have inspired GMB and Hallmark to team up with the premature baby charity, Bliss. Four different designs have been created and 20p from each sale will go to Bliss. The cards are available today from Amazon, Selected Tesco stores, Morrisons and specialist card and gift shops. Read more here.

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All Party Parliamentary Group (APPG) for Continence Care

I recently attended, on behalf of BBUK, the APPG meeting held in London. This group has a voice in government to look at developing continence care and attracting investment to the specialty to improve outcomes for individuals who have bladder and bowel problems. The group has been involved previously in developing guidance on commissioning a continence service showing examples of how a continence service should function.

In 2007 a survey* was conducted to establish an overview of continence care in the UK. The results painted a bleak picture for clinical staff and patients alike. In addition to existing concerns expressed by clinicians, politicians, patients and industry alike, this further demonstrated the need for Continence Care to be discussed at the highest level.

Subsequently the All Party Parliamentary Group (APPG) for Continence Care was formed, chaired

by Baroness Sally Greengross. In 2011 the APPG launched its report 'Cost-effective Commissioning for Continence Care.' This was written as a guide for GP commissioners by continence care professionals, and is available at www.appgcontinence.org.

I have been an active member for nearly eight years and continued to be part of the invited group since joining BBUK still as an expert clinician but also to be a patient representative to

ensure individual needs and clinical requirements are considered. It is essential that patients have a voice and representation from BBUK on this group facilitates this at the highest level.

The agenda in July included discussions around the reviewed and updated Excellence in Continence Care document, the NHS National Procurement Programme, NMC standards of continence education for nurses, midwives and nursing associates and a review of facilities in men’s washrooms.

There was representation from the healthcare continence industry companies, specialist nurses and medics from the NHS, third sector and government.

Baroness Sally Greengross continues to be the chair of the group passionately leading the group to lobby for investment in continence care, standardising standards of care and 17

accessibility to services for all. Rosie Cooper, MP, was unable to attend but continues to strongly support the group as co-chair.

It was noted from the discussion that continence care still is not warranting the profile the speciality

deserves although there is so much passion and drive from those involved in caring for individuals who have bladder and bowel problems.

Good to know there is a group that can pose questions via members of parliament for clarity around this speciality. This helps to empower clinicians in the work they do and the patient in the services they access.

Study Day Overview Break the Taboo - Let's Talk about Poo!

I recently attended a study day at Alfreton to promote Bladder and Bowel UK to a wider audience.

It was a great pleasure to be part of this study day as there were over 130 delegates who attended to all talk everything continence.

The agenda covered dementia and continence, urine testing and UTIs, frailty and sepsis to name a few. I was able to attend some of the clinical sessions and take part in the learning and discussions taking place which was a good experience.

During registration, coffee break and the lunch break there was a great opportunity to promote BBUK services such as the confidential helpline, Just Can’t Wait and Adult Resources available on the website for downloading and reference.

Helen, one of the Continence Service nurses, also, put out service leaflets on all the tables in

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the conference hall helping to promote the organisation.

Overall the day was excellent, the organisation of the event was very professional and the opportunity to network with healthcare professionals and company representatives was fantastic.

Thank you to Helen Greaves and colleagues for the kind invitation to take part.

I'm looking forward to attending other similar events. If you and your organisation are organising a similar event please do not forget to invite BBUK to attend!

Joanne Hoyle, Continence Specialist Nurse

Loo of the Month - Portable Toilet Stationed at the Top of Pantokrator Mountain Corfu Greece

For anyone travelling to Corfu for their summer hols this year , you may like to venture up Pantokrarot mountain, to see for yourself this months loo of the month , which also provides rather stunning views.

Connect with Us on Social Media As you know Bladder and Bowel UK is active on the Twitter, LinkedIn and Facebook social media networks, if you have anything that you wish us to share for you just get in touch, or tag us in.

Please follow us, like us and connect with us!

@Bladder-and-Bowel-UK

@BladderBowelUK

Bladder and Bowel UK

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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.

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www.disabledliving.co.uk

0161 607 8200

Get in Touch with Us

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

Bladder and 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