BBUK February Newsletter

Bladder & Bowel UK Newsletter February 2019

BBUK SYMPOSIUM Last 5 places - book now!

GREAT NEWS FOR CHANGING PLACES £2million fund created

WORLD BEDWETTING DAY Time to take action

THE PROPEL PROJECT The findings

Charity number: 224742

Explore Our Key Features Great news for Changing Places...................................................................................................4 Limited places left for our BBUK Symposium................................................................................7 How to take action for World Bedwetting Day................................................................................8 ACA events..................................................................................................................................12 The PROPEL Project...................................................................................................................14 Loo of the Month..........................................................................................................................16

World Down Syndrome Day

Thursday 21st March 2019

Improving Advice and Information for Potty Training Children with Down Syndrome Following calls to our helpline and workshops with parents of children with Down syndrome (DS) we realised not only the lack of support available for parents thinking about toilet training but also how much misinformation is out there. Working with charity The Ups of Downs a Facebook page has been developed specifically to help support potty training children with DS and all health care professionals with a specific interest in this area are welcomed to join. It is a closed group and will be an opportunity to ask questions, share experiences and promote best practice.

To request to join the group please visit: www.facebook.com/groups/219984462212935/

Accessible Toilets

Being able to use a toilet is a basic human right and one many of us don’t need to think too hard about. However, for those affected by continence issues, availability of suitable, clean toilets makes a huge difference to quality of life. For people who also have mobility issues and who need to be hoisted and/or have access to changing beds to attend to their continence needs the lack of suitable facilities in our communities significantly reduces their ability to enjoy community facilities, events and amenities that most take for granted.

Changing Places Consortium launched their campaign for accessible toilets for the 250,000 people that they estimate cannot access universal or standard disabled toilets in 2006. By 2007 there were 140 Changing Places and there are now 1239 Changing Places toilets, which have been installed across the UK. These toilets are accessible to those who have a RADAR key and provide a height adjustable adult-sized changing bench, a hoist, adequate space for the disabled person and up to two carers, a centrally placed toilet, a screen or curtain, wide tear-off paper roll for the bench, a large

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waste bin for disposable pads and a nonslip floor.

The individual does require their own sling for the hoist.

Currently building regulations guidance only makes recommendations for the installation of Changing Places. However, just before Christmas the local Government Minister Rishi Sunak announced that there were proposals to legislate for Changing Places to be provided in all new large public buildings in England. There are plans to consult on the proposals this year (it is a legal requirement to consult on changes to building regulations).

Great News for Changing Places The consultation is expected to look at the specifications for the Changing Places as well as which buildings should be covered e.g. cinemas, shopping centres, sports and music venues and transport hubs.

At the same time Care Minister Caroline Dineage reported that a £2million fund had been created to help establish Changing Places in over one hundred NHS hospitals.

Trusts will be invited to bid for the funds to install a Changing Place this year, but this will be on a matched funding basis, with Trusts expected to contribute towards the estimated £27,000 to £35,000 installation expense.

There will also be £70,000 made available to provide an online map of the UK to help

people with disabilities and their carers locate Changing Places.

More information on Changing Places, including their current locations, is available at www.changing-places.org.

There is information on the government’s proposals at https://www.gov.uk/government/news/minis ters-act-to-increasse-changing-placestoilets-for-severely-disabled-people .

Radar keys (keys that open accessible toilets) are available to purchase by people with physical or learning disabilities.

Information on the keys is available from https://www.radarkey.org

Visit Bladder & Bowel UK's Online Shop

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

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BBUK's Symposium Programme 2019

LIMITED PLACES LEFT

The education programme for BBUK’s symposium has just been released and promises to provide excellent CPD and re-validation opportunities through 3 learning streams.

• Bladder

•Bowel

• Children & Young People

The diverse range of seminars and workshops delivered by experts in their field, will present the latest evidence based research and clinical data. There are 12 seminars including: • Continence & Sexual Relationships • Mental Health & Continence • Improving Continence for Children & Young People with Neuro-disability • Prolapse and Urinary Incontinence, a combined approach to the pelvic floor • The Law and the Children’s Nurse • Continence in Older People For the full programme visit the website. There will be a comprehensive exhibition providing the opportunity for you to update your knowledge on the latest products, equipment and treatments.

The annual symposium is relevant to all HCPs working in the field of continence, bladder and bowel care. Due to venue capacity numbers places are limited. The symposium is always oversubscribed with a waiting list, so early booking is essential.

Date: Wednesday 6th March 2019 Cost: £30 to cover administration charges (lunch is included) Venue: USN Bolton Arena, Arena Approach, Horwich, Bolton BL6 6LB For further information and to request a booking form please contact Bladder & Bowel UK on 0161 607 8219. Booking forms can be downloaded from the website www.bbuk.org.uk

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Summer's Story of Life with Spina Bifida

Summer was born with a hole in her spine. Her nerves were all exposed causing her to be paralysed from her chest down. This has resulted in her now being a full-time wheelchair user, double incontinent and very reliant on those around her for daily support.

On top of this she was also born with Hydrocephalus (extra fluid on the brain).

This is controlled by a ‘shunt’ which drains the fluid from her brain down to her belly. It is essentially a valve, which is programmed using magnets, to control the amount of fluid to be drained. Unfortunately this means she must avoid heavy magnetic fields, e.g. airport scanners, MRI scanners, as they can adjust the setting of the shunt.

With all of these diagnoses, she has had to deal with much more than the average 6 year old. Currently she has had 4 brain surgeries, 1 major spinal surgery, multiple bladder surgeries and regular scans and check-ups, most of which are done in the Evelina Children’s Hospital in London. She also has many more operations planned for her future, including a full bladder reconstruction.

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Fighting for Summer’s needs As a family we often have to fight on Summer’s behalf, for equipment and services that she should be entitled to and should be receiving as standard. For example; when Summer was just 2 ½ years old, her consultant in Evelina recommended she have a wheelchair for her own independence and self esteem.

However, her local wheelchair service declined. This then bought our first big fight for her!

We were very lucky to come across a small local charity (Charity For Kids) who were able to fund a Quickie Youngster 3. This is a lightweight wheelchair that suited all of her needs. Since then the charity has assisted in the purchase of further equipment which was declined by the NHS, including physio equipment and her 2nd wheelchair, a Ti-Lite Twist. The local community also pulled together to raise money for a specialist bed for Summer, again cementing our faith in the community spirit of Hastings.

All of this obviously takes its toll on Summer and the whole family, however to meet Summer you would never guess! She is a very bright and cheery little girl, who loves unicorns, fairies and princesses. Summer has an extremely kind and caring nature. She is one of the most selfless people I know, regularly engaging in charity events to ‘give back what they have given’. She is currently training with her dad for her 1st half marathon! Summer is a big personality in the local community, spreading joy and smiles everyday.

Summer’s favourite hobbies and activities Despite her obvious challenges, Summer loves to join in playing with her peers and is involved with an inclusive cheer group, performing in shows and events. She has recently begun ballet, with the prospect of shows and dance exams in the near future and also involves herself with local charities attending events and raising funds to support others. To date, Summer has raised nearly £10,000 for charity and has more planned for future events.

When she isn’t dancing, Summer has a daredevil streak within her. Having discovered para-athlete Aaron Fotheringham on YouTube, Summer has been interested and involved in WCMX (wheelchair moto cross).

She has followed her older brothers and taken her wheelchair to skate parks and ramps and

also to BMX bump tracks.

Although she finds it rather daunting and scary to start, she loves the thrill of speed and pushing herself and her chair to its limits.

Her WCMX dreams came true in June 2016, when she got to meet Aaron. Nitro Circus (who Aaron performs with) were performing in Sussex. Aaron invited Summer to have VIP tickets to watch the show and meet with Aaron afterwards.

Here, Summer watched him do his back flip in his wheelchair, off a 50ft ramp!

Summer said to her mum and dad, “I want to do that!”

What we love the most about Summer Any parent would agree that, every achievement your child makes will make you proud. As a parent of a child with additional needs those achievements can be very different. With Summer’s paralysis and the challenges that come with that, her sheer determination and perseverance inspires us, her friends, peers and everyone she meets. This was recognised last year when Summer was awarded with the ‘Gold Award’ at the ‘2018 Child Of Sussex Awards’ in Brighton. Today, it’s still a huge highlight in her life. And it gives her the recognition of the brave, strong and amazing little girl she is.

In the six years of her life, we have become more than just parents. We have become carers and nurses to her, advocates for hers and all disabled rights.

We have become specialists in her conditions and a voice to stand up for her rights and needs. This is part of the ‘behind-the-scenes’ of parenting a child with extra needs, which no one ever tells you about. But we wouldn’t change a thing!

Shaun Finlay Summer's dad 11

PROPEL Project: The Findings I attended a fantastic event on Tuesday 12th February at the Mary Ward Conference Centre, London. The event was to update on and present preliminary findings in the PROPEL project that BBUK had actively been involved in. The clinicians who attended were mostly Specialist Physiotherapists, some Continence Specialist Nurses also attended. There was real positivity in the room to work together to improve care.

PROPEL is a project with the overall objective of the implementation of an evidence based pelvic floor muscle training intervention for women with pelvic organ prolapse (POP).

The project has been facilitated by a team at the University of Stirling in conjunction with NHS partners and BBUK, along with a lady who had experienced POP surgery. The NIHR, National Institute for Health Research, has funded the project therefore the data belongs to them.

The project started in 2016 after it was discovered that Pelvic Floor Muscle Therapy (PFMT) was still not widely available across the NHS as there was a limited number of specialist physiotherapists available. An aim was that more women with POP would receive PFMT as a first line treatment avoiding the need for surgery.

An objective was to understand how PFMT could be provided in the real world of the NHS and in the context of local services. The project initially involved three NHS sites which had variation in care pathways. Two other “lighter” sites became involved over time. Each site looked at how they could incorporate more proactive care in each area based upon the resources available, existing care pathways and management support.

All clinicians involved received training on pelvic floor muscle assessment, with the exception of specialist physiotherapists, and 14

support from a named clinician within their organisation prior to and during implementation.

Measurements were made in relation to the women’s perceptions of their prolapsed symptoms and how it affected their quality of life before and after PFMT; whether the severity of their prolapse changed; and whether they needed further prolapse treatment. Other measures involved the costs and benefits of the different delivery methods.

Findings are still to be produced but initial findings show: Women benefited from PFMT and the number needing to progress to surgery was reduced regardless of who the clinician was Women reported an overall improvement in their Quality of Life The services involved felt this was a cost effective way to manage women with POP. It may be a good time to benchmark services to see what services you offer to this group of women, who is trained to assess, provide management and support through PFMT and is there any opportunities to look at training that may enhance services and may, even, attract investment from commissioners.

The overall findings to include quantitative and qualitative data to be published at some point.

Joanne Hoyle Continence Specialist Nurse

Loo of the Month - Estes Park, Colorado The local WC at rock climbing area

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