BBUK's August Newsletter 2019

Bladder & Bowel UK Newsletter August 2019

THE COST OF CONSTIPATION New report now available

BBUK'S ADULT BOWEL EDUCATION DAY Last few places available

TOILET TRAINING CHILDREN WITH ADDITIONAL NEEDS Tips from our Children's Specialist Nurse

ACCESSIBLE TOILETS AND THE EQUALITY ACT IS A TOILET A PIECE OF ART? 100,000 + people think so

Charity number: 224742

Explore Our Key Features

Cost of Constipation report...………...………......…...………...…...……...…….........……..........................................4 BBUK's Adult and Paediatric Education Days...…………………...………...…………………......………...………………...6 Visit the Continence & Stoma Products section on the Supplier Directory...………………...………………...…......8 Accessible toilets and the Equality Act...…………………………………………………………...……………..……...…........10 Facebook group for parents of children with Down syndrome………………...…............………………..……...…….12 Toilet training children with additional needs......……...…...………………………......…...…...……...………….………..14 Blenheim Palace to welcome iconic artwork...………………….........…...…...…...…...………...………...…....…...…..17 Loo of the Month...…………………………………...………….........…...…...……………..................……...…...….............18

Highlighting Support of the BBUK Helpline

If you would like to support our helpline please call us on: 0161 607 8219 or email: bbuk@disabledliving.co.uk www.bbuk.org.uk/helpline-supporters

New Report Reveals the Cost of Constipation

Though most of us have experienced constipation at some point of our lives, it remains an issue that many are unwilling to discuss. To raise awareness about the scale of the impact of constipation on both patients and the Health Service, the Bowel Interest Group published its Cost of Constipation report this Summer, presenting eye-opening data that makes it clear more needs to be done to alleviate the problem.

GPs should be a first port of call for patients suffering with constipation; yet one in five are too embarrassed to talk to their GP. Highlighting the scale of stigma associated with constipation, an equal proportion said they would be embarrassed to discuss erectile dysfunction with their GP. As there is a lack of understanding about what constipation is, what is ‘normal’ when it comes to bowel health and how it should be treated, it is vital for sufferers to be able to speak comfortably to a medical professional as early on as possible.

Unfortunately, the stigma means that people are suffering in silence needlessly until the condition becomes too difficult to bear, necessitating more intensive treatment. In 2017/18, constipation was

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the cause of 71,430 hospital admissions, the equivalent of 196 people a day!

Constipation is a treatable and manageable condition, so earlier and improved treatment would alleviate an unnecessary burden on the NHS: in the same year, the total cost for treating unplanned admissions due to constipation was £71 million.

Even more importantly, there is a long-term impact on wellbeing and quality of life. Chronic constipation can cause debilitating physical and psychological distress, especially as it can cause other issues, such as chronic pain and urinary tract infections (UTIs). For some patients with existing health conditions, such as multiple sclerosis, constipation is yet one more complication that can amplify anxiety and depression. In fact, 40% of patients with constipation experience an anxiety disorder.

The perception that constipation is a minor health issue that can be easily treated at home without professional support can lead to avoidable aggravation of the problem.

Bowel habits are an important indicator of our health and any complaints in this area should be given the same attention and care as other ailments. Patients suffering from constipation may simply require advice about improved diet, exercise and laxatives – of course, good bowel health starts at home – but those with long-term conditions or immobility may need more intensive treatment.

Improved understanding about bowel health can therefore empower patients and help to prevent unnecessary suffering, while at the same time eliminating avoidable costs for the NHS. Please find the full report here.

Dr Benjamin Disney Consultant Gastroenterologist University Hospitals Coventry and Warwickshire NHS Trust

Visit Bladder & Bowel UK's Online Shop Visit: www.bbuk.org.uk/online-shop or call: 0161 607 8219

Over 250,000 in stock items at competitive prices

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.

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 & 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. www.bbuk.org.uk/online-shop

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Adult Bowel Education Day - 26th September 2019 Are you a Healthcare Professional who works with adults in bowel care?

Would it be beneficial to network with other professionals?

Would you like to join a group and attend an education event where you can share ideas and benchmark evidence based practice?

This interactive day offers Healthcare Professionals an opportunity to attend a variety of educational presentations and workshop sessions.

Date: Thursday 26th September 2019 Venue: Redbank House, St Chad’s Street, Manchester, M8 8QA Cost: £25 www.bbuk.org.uk/professionals/professionals-training/training-bowel-special-interest-group/

Paediatric Education Day - 17th October 2019 Are you a healthcare professional who is supporting children with bladder & bowel problems?

Would it be beneficial to network with other professionals?

Would you like to join a group where you can share ideas and benchmark evidence based practice?

This interactive day offers Healthcare Professionals working with children and young people with bladder and bowel problems an opportunity to attend a variety of educational presentations and workshop sessions.

Date: Thursday 17th October 2019 Venue: Redbank House, St Chad’s Street, Manchester, M8 8QA Cost: £25

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www.bbuk.org.uk/professionals/professionals-training/training-paediatric-continencepromotion-day/

STOP PRESS!

STOP PRESS!

2 BBUK Symposiums in 2020 bringing our CPD events near to you!

Ricoh Arena, Coventry Tuesday 3rd March 2020 & USN Bolton Arena, Horwich, Bolton Wednesday 30th September 2020 Health & Social Care Professionals have travelled from all corners of the UK to attend the BBUK Symposium in Bolton. Each year we are oversubscribed.

You have asked if we can organise a Symposium a little further 'south'. We are delighted this will happen in 2020.

We have gone one better, we are having 2!

Contact bbuk@disabledliving.co.uk for further information

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Sainsbury's trials new sunflower lanyard initiative to help customers with hidden disabilities Sainsbury’s has announced the extension of a new trial to help enhance the shopping experience for customers with hidden disabilities.

The trial enables customers with hidden disabilities to collect a lanyard which indicates to colleagues that extra support is needed Following a successful launch at Sainsbury’s Barnstaple store, the retailer will be rolling it out to further stores this month Sainsbury’s is the first supermarket to trial the initiative as it continues to build on its vision to be the UK’s most inclusive retailer www.about.sainsburys.co.uk/news/latest-news/2018/14-082018-lanyards-trial

Visit the Continence & Stoma Products Section on the 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.

You'll find the Supplier Directory on our website homepage: www.bbuk.org.uk

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An Interview with Margaret Ellis on Accessible Toilets

Deborah Bell, Enablement Team Manager at Disabled Living recently interviewed Margaret Ellis.

Maggie originally qualified with a Diploma and later graduating as an Occupational Therapist, working in a range of service provision including management of physical disability, mental health and learning disability services, sometimes combining NHS and Social Services.

Can you tell us a bit about yourself?

I qualified as an Occupational Therapist, working in a range of service provision including management of physical disability, mental health and learning disability services, sometimes combining NHS and Social Services. Now, I run an Independent OT practice, West Square Associates.

I have been Chairman of the British OT Association (now RCOT) and of the European OT Committee and I have also been a member of several university and research boards.

My membership of EU and ISO Technical Committee brought wider experience and the opportunity to link user needs with planners and

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policy makers, especially concerned with Appropriate Design and Practice for People with a Disability, including Accessible Transport.

I am currently a Member of some ISO Technical Committees for similar topics and also Coordinate the European Group for eTechnology which started at LSE in 2010.

Why are you interested in discussing accessible toilets?

I am part of the Cross Party group for Disability in Holyrood and the All Party group in Westminster which have recently been looking at the need for accessible toilets. Part of this involves gathering facts about existing and lacking facilities.

Part of this information gathering has emphasised a well known fact that in some parts of the country there are open facilities for men and women while the ‘accessible’ facilities provided are in fact inaccessible because they are locked.

In a remote village in Scotland, in the Highland Region, the ancient notice on the door of the “accessible toilet” tells potential users they can get the key to unlock the door from the Post Office.

The Post Office is about a mile away and is only open for twenty Hours a week. When I wrote to all the members of the council concerned about this a disabled council member wrote back to me to tell me it was wonderful because he had purchased a key (costing about £5) so he could always use a loo whenever he needed. Should he have to buy a key to have a wee?

The opportunity to visit Kidz to Adultz Wales & West presented itself and Disabled Living is one way we can get the message across that disabled access to toilets around the country is being looked at.

You say Councils are failing to comply with Equality Law, why do you think this is?

We discovered early on that Central Government does not force Local Government to provide Public toilets. In fact, in some parts of the country facilities are under threat as part of the general thrust for savings in our society.

One thing we have determined is that the Equality Laws require that providers offer similar or even the same facilities to all users. If a council only offers locked facilities to accessible toilets it could be inferred that they are failing to comply with Equality Law. There is the misconception that Accessible Toilets are locked to prevent them being defaced. What is your response to this claim?

There is also the theory that anybody might use them. Fortunately there is now more awareness about hidden disabilities with some supermarket chains adding the excellent slogan ‘not all disabilities are visible’.

What has happened so far?

The convener of the Cross-Party Committee in Holyrood was so concerned about the locked facilities that he has managed to get the Planning Laws changed in Scotland so that planning permission will prohibit locked facilities. It's a start but not the whole solution.

Some work has been done about the development of Changing Places Toilets which offer a wider range of disabled facilities including hoists and changing plinths. The UK government has funded a £2 million review with the Multiple Sclerosis Society of some motorway Changing Places toilets.

There are many instances where the toilet facilities are inadequate and inaccessible preventing people from living the independent life they want to. We must continue to highlight the issues and push for equality in accessing facilities which are fit for purpose. The more information people have the louder we can shout.

We do now more greatly appreciate the requirements of the Equality Act www.gov.uk/guidance/equality-act-2010guidance. This requires that facilities should be equal for us all wherever they are provided.

So no place should be locked against anybody.

Margaret Ellis Lead Academic and Co-ordinator EKTG, Enterprises, London School of Economics

So far the All Party Group and All Party group have only had one report of such action in Disabled Facilities although many of us are faced with vandalised public toilets.

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Going Potty?!

Bladder & Bowel UK has joined up with Positive about Down syndrome (POD) to develop a Facebook page and a set of new resources. The aim is to help inform parents of children with Down syndrome regarding the best time and approach to use when starting potty training. From calls to our helpline and discussions with parents at workshops, we became aware that this was an area where parents of children with Down syndrome were often given no advice or any advice given was unhelpful or even incorrect.

A meeting with Nicola Payne, herself a parent of a child with Down syndrome and an active member of various related organisations, led to a discussion regarding how we could make things better. As most people use the internet to gain information and many are also active Facebook members the idea of developing a specific Facebook page was born. Nicola explains below how the idea started.

“Having run a local support group, The Ups of Downs in Warwickshire since January 2006 and been very actively involved with many Down syndrome related Facebook pages, I’d noticed how often parents would be expressing concern that their child wasn't ready to be potty trained and so more and more parents were delaying toilet training their child with Down syndrome.

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After organising a training day with June Rogers in 2018, I approached June to ask if she’d be interested in collaborating. I knew I could find the parents but needed an expert on hand to proffer their advice. And so in January 2019 we formed Going Potty?! a Facebook page for both parents & professionals to ask advice, share experiences and support each other through the joys of potty training. June & I are both passionate about promoting to parents to start young, from about 9 months of age and we have already seen many parents embarking on the step by step approach with great success! In just a few months we already have a very supportive community of more than 1,200 U.K. based members and welcome more professionals to both share their expertise and also perhaps be inspired by how well our little ones can do with high expectations, the right knowledge and support.”

Link to the Going Potty?! Facebook page www.facebook.com/groups/219984462212935/

https://www.bbuk.org.uk/wpcontent/uploads/2019/08/Toilet-rules-age-31.pdf

The Top Tips sheets for Potty training and Getting ready for toilet training can be found at: https://www.bbuk.org.uk/wpcontent/uploads/2019/08/Top-tips-for-gettingready-for-toilet-training.pdf https://www.bbuk.org.uk/wpcontent/uploads/2019/08/Top-tips-for-pottytraining.pdf The posters can be found at:

Other resources for toilet training children are available at:

https://www.bbuk.org.uk/wpcontent/uploads/2019/08/Toilet-rules-age-1-1.pdf https://www.bbuk.org.uk/wpcontent/uploads/2019/08/Toilet-rules-age-21.pdf

https://www.bbuk.org.uk/children-youngpeople/children-resources/ June Rogers Children's Specialist Nurse

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BBUK Just Can't Wait Cards

s nt tie pa 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

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Toilet Training Children with Additional Needs

June talks about toilet training children with additional needs. Becoming toilet trained is a milestone all parents strive for with their child, particularly if that child has additional needs. For some parents, this seems an unachievable goal. However, experience has shown us that for the majority of children this clearly is not the case.

I always explain to parents that becoming toilet trained is like climbing a ladder.

At the bottom of the ladder is the fully dependent nappy-wearing infant. And at the top of the ladder is the fully independent, bottom wiping, toilet flushing, hand washing, toilet trained child. What we aim to do during the whole toilet training process is to enable the child to get as high up the ladder as we can. Some children we only get half way up. So, although they are clean and dry and wearing normal underwear, they will always need some help and support regarding toileting.

However children always surprise us and, as we do not have a magic wand, the fact that some of these children reach far higher up the ladder than we would ever have thought possible, means that they had that unrecognised potential to do so. We clearly have a duty of care to support families to enable every child to reach their full potential.

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Many parents say they have not started toilet training their child as they have been told they were not ’ready’. I have been toilet training children for nearly 30 years and never in that time has a child put their hand up and told me they were ‘ready’ to be toilet trained!

Becoming toilet trained is a developmental skill, similar to learning to walk and talk, yet we seem to treat delayed toilet training differently. For example if we are aware of a child who has speech and language delay then we would automatically refer them on to a speech and language therapist. Similarly if we had a child who was struggling to learn to walk then we would refer them for an assessment, to try and identify the underlying cause, with a referral on to a physiotherapist if necessary. We definitely would not say that as the child shows no interest in walking we would wait until he was ’ready’ to walk and only then we would refer them on.

Neither would we ignore a child with delayed speech saying that when they showed an interest in talking only then would we do anything about it.

So why is it that, in the vast majority of cases, when a child is clearly struggling to become toilet trained at an appropriate age, parents are told that the child is ‘not ready’ and nothing is done about it?

All activities of daily living, such as washing your face and cleaning your teeth, have to be taught in an appropriate timely way. We don’t, for example, wait until a child has a full set of milk teeth at age 3 before we present them with a tooth brush and a tube of tooth paste, without them ever seeing them before, and expect them to independently start brushing their teeth. We introduce the toothbrush when their teeth start to come through and also spend time showing them what to do. So, by the time they are 3 years old most toddlers can make a decent attempt of tooth brushing.

Why then do we suddenly present a toddler with a potty, sit them on and expect them to happily sit there and produces a wee or a poo when they have really no idea what it is all about!

Becoming toilet trained is the interaction of two processes. The first is physical maturity of the bladder and bowel. This improves with toilet training, but develops in most children from about two years old. The second is social awareness and motivation of the child. We can therefore clearly see why some children with additional needs may struggle with the toilet training process; they often have no social awareness and are not at all motivated to use the toilet, because their nappies keep them warm, feeling dry and comfortable!

That said children with additional needs are just as likely as their typically developing peers, if not more so in some cases, to have an underlying problem with their bladder and bowel. This may be the cause of the delay in them achieving bladder and bowel control. For that reason all children, who are struggling or delayed with toilet training (not toilet trained by their third birthday) should undergo a comprehensive assessment to exclude and address any underlying problems such as constipation.

The potty should be introduced at around six months of age. After, weaning the poos usually become more predictable and most children have developed a good sitting balance by then.

By gradually introducing the potty at set times during the day, it quickly becomes part of the child’s daily routine.

Along the way, more by good luck than expectation, you may be able to ‘catch’ a wee or a poo. This should be responded to with lots of praise so that the child understands that this is a good thing to do!

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Once a routine has been established, the child has some awareness and understanding regarding wees and poos and of what is expected and there are no major disruptions, such as starting nursery, moving house etc, then that is the time to remove the nappy and put a formal toilet training programme in place. This ideally should be when they are two to two and a half and no later than about age 3 years.

Parents should ask for help, sooner rather than later, if things are not going according to plan. The formal toilet training process should only take a couple of weeks at the very most.

All the background work, such as potty/toilet sitting, awareness of wee and poos etc, would have been done previously.

More information about toilet training children with additional needs For further information and advice regarding all aspects of toilet training look at the Bladder & Bowel UK website resources page or contact us via our confidential helpline 0161 607 8219 or on email bbuk@disabledliving.co.uk.

June Rogers Children's Specialist Nurse

Spotlight on BBUK Services: Helpline How do we contact you?

The helpline is available Monday to Friday, 9.00am - 4.00pm. We are also contactable by email: bbuk@disabledliving.co.uk

So who contacts us?

General public and their relatives/carers. Health and Social Care Professionals and other groups such as teachers/assistants, nursing and residential homes. We may also be contacted by other organisations such as charities and support groups.

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Blenheim Palace to Welcome Iconic Artwork

Thursday 12th September - Sunday 27th October 2019 This autumn, Blenheim Palace will welcome iconic artworks by famed Italian Conceptual artist Maurizio Cattelan throughout its interiors, engaging with the site’s recent history and unique setting. This is Cattelan’s first solo exhibition in the UK in twenty years and will feature new works displayed for Image source: www.pixabay.com the first time in this exhibition.

'America' is a solid 18-Karat gold toilet which will be in a secret location within the Palace. Over 100,000 people famously queued up at New York's Guggenheim Museum in 2016 to see this piece.

Three minute time slots are available to book ahead or on the day of your visit.

For more information please visit: www.blenheimpalace.com/whats-on/events/maurizio -cattelan/

Information provided by Blenheim Palace

One-percent art for the ninety-nine percent.

- Maurizio Cattelan 17

Loo of the Month - The Shard, London, UK

Tourist toilets at summit base camp of mount Kilimanjaro at sunset, Africa

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 Email: bladderandboweluk@disabledliving.co.uk Tel: 0161 607 8219

Part of Disabled Living Website: www.disabledliving.co.uk Email: info@disabledliving.co.uk Tel: 0161 607 8200