Guest Blog. It meant I could have a drink.

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This month we are focusing on the needs of people who need help or equipment to stand up from the toilet.

Find out more about our topic and people who might experience difficulties in this post.

Our first guest blogger shares their enlightening story …

(Guest blogger has chosen to remain anonymous, South UK)

I live with a muscle wasting disease. It is progressive and over the years I have had to adjust to my declining physical state. I have come to terms with the loss of dignity and independence and I am accustomed to family, friends, carers and strangers assisting with the most intimate of tasks. The times I got stuck on toilets and had to be helped up by strangers of either sex was no fault of mine. This disease progresses as it will it seems; one day I could get off a regular water closet with a great struggle, the next I could not get off even with the knowledge that I was about to invite a stranger to rescue me from the most embarrassing of positions.

You would think that a hospital would have the facilities and knowledge to ensure that all people who use it could use the toilet. It is the most basic of needs! I have had surgeries when I would not be allowed to leave until I had used the toilet. Now, even with the help of carers, there is hardly any toilet in my local hospital that is accessible to me. I have had to resort to even more creative solutions when enduring any of my frequent hospital visits. There is no point wearing a diaper as there appears to be no toilet that has a hoist or a changing table. I try not to drink before most hospital visits but sometimes the appointment is for a scan and the instructions are to drink 2 litres of water before the procedure. 

For now, I can just about manage to pass urine into a bottle. I cannot sit on the toilets as even if I wanted to attempt a side transfer my carer could not fit into most toilets with me and my bulky wheelchair. Even when we do fit in a toilet the toilet is too low for a transfer and there isn’t enough space to park parallel to the toilet. So, whenever I need to go to hospital I use Imodium and Desmomelt when I want to avoid the toilet. Yes, it is drug abuse, but I consider it a pre-emptive strike so I do not have the indignity of needing the toilet and not being able to use it. 

More space to transfer helps. If there could be height adjustable toilets that would be great. 

I remember my excitement when I visited the Essex Coalition for Disabled People and saw a raised toilet seat in the toilet. It meant I could have a drink.

[Thank you to ‘anonymous’ for sharing this story for our project)

Unable to stand up from the toilet?

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Our topic for this month looks at what people do if they can not stand up from a toilet (sitting to standing) – yet may be able to walk or get in and out of a modern powered wheelchair, unaided. How do people manage inside and outside their home?

We will be adding links below to our guest bloggers and hearing about this dilemma which affects hundreds of thousands of people in the UK.

Building Robots

robot

More to the point – what has it got to do with accessible toilets?

Well, we need to understand the complexity of normal body movement and posture – to learn about what can go wrong.

Only then can we see why so many people might not be able to use even the best of accessible toilets outside their home, such as Changing Places.

Human movement is amazing – when it works.

Because humans have a complex body to replicate, even the best robotic designers find it a major challenge to reproduce our abilities.

 

In a very simple form, humans need:

  • A solid framework to attach muscles to (skeleton of the right shape and material)
  • Muscles, tendons, connective tissues (allowing us to push, pull, bend, rotate etc)
  • Nerves and brain function to co-ordinate / activate muscles (for tone, balance etc)
  • Feedback and fine tuning network 
  • Fuel to ‘use up’ when performing the actions (nutrients, oxygen and a range of chemical exchanges to make electrical impulses for example).

Can you imagine how a problem with just one element of the above might prevent people form being able to remove clothing, sit on a toilet, clean themselves, stand up again etc.

Standing up from the toilet

From the muscles in your toes right through to the muscles in your head and neck (and all the electrical and chemical activity between your brain/spine/muscle) that’s a lot of things that need to be functioning well to go from a sitting to standing position.

So what type of impairments might someone have that could cause difficulty or an inability to stand up from a regular toilet?

The key problem areas are medical conditions which affect balance, muscle strength and co-ordination.

  1. Cancer (weakness, balance, thinking – varied effects on the body depending on severity/location)
  2. Stroke (balance and muscle weakness)
  3. Cerebral Palsy (affecting movement and co-ordination)
  4. Lower limb amputation(s) (balance, movement range)
  5. Spina Bifida (nerve damage with varying affects)
  6. Spinal Cord Injury (nerve damage with varying affects)
  7. Fibromyalgia (chronic pain condition)
  8. Osteoporosis (can cause limbs to twist, pain, joint movement problems)
  9. Chronic Fatigue conditions
  10. Chronic Arthritis and Rheumatoid Arthritis (range of movement, deformity, pain, balance)
  11. Multiple Sclerosis (can affect strength, balance, memory, thinking, vision)
  12. Neuromuscular Disease (hundreds of different types and sub-types causing muscle weakness  e.g. Muscular Dystrophy, Motor Neurone disease, Spinal Muscular Atrophy, Guillain-Barre Syndrome, Polymyositis)
  13. Weakness caused by old age
  14. Brain disorders
  15. Medications (medication to lower cholesterol can cause limb weakness for example)
  16. Parkinson disorders (stiffness, balance, movement, thinking, co-ordination, fatigue)
  17. Leg trauma (fractures, sprains, strains)
  18. Spinal degeneration, abscess or tumour

 

Solutions at home

riserSome people manage at home by have a toilet seat riser – making a standard toilet seat 4-5 inches higher. Riser frames and other types are also available to provide a fixed height.

All wheelchair accessible toilets in the UK must be able to take the addition of a raised toilet seat (but are almost never provided probably because if you have that level of impairment you’re unlikely to be able to fit one without help).

Many people still find these too low or it leaves them dangerously high with their legs dangling in the air, unable to touch the floor for balance whilst seated.  These people require the use of a toilet seat or toilet pan that can be electronically raised and lowered to suit their requirements.

Clos-o-Mat_-_Toilet_Lifters1.jpgClos-o-Mat_-_Toilet_Lifters2.jpg

Above, Aerolet vertical and tilt from Clos-o-Mat [Source: Clos-o-Mat.com]

Often people ‘drop down’ onto a lower toilet (and to be able to sit with feet on the floor for balance) then raise the toilet very high, so they can slide down onto their feet, to get off. Changing Places and ‘wheelchair accessible’ toilets do not provide a removable raised toilet seat nor height adjustable toilets as part of their standard of provision.

People who are unable to stand at all, or push up with their arms, will use a hoist to get to and from the toilet.

No solution outside the home

There are hundreds of thousands of people who can walk (or raise their wheelchairs up to help them stand) and don’t have full time carers or assistants with them, yet can not stand up unaided from the toilet.

Clinics might provide perch stools or extra high seats in hospital waiting rooms for example, yet provide only toilets with low seat heights. Hospital staff won’t help pull you to your feet because of policies which forbid lifting/assisting in this way.  If that’s the level of support you get in a hospital – what about generally out and about?

Public venues could easily provide a raised toilet seat and staff to secure it, if they wanted to help people – but they don’t. Outside the home, if you can’t stand up from a toilet your can’t use it.

In one instance, this meant a disabled lady had to deficate into her hands in a standing position. We should be ashamed at not providing proper facilities in the UK. 

This month, we are publishing the stories of individuals who have the dilemma of not being able to use toilets outside their home – and why Changing Places are not meeting the needs of people who need height adjustable / higher toilets.

No toilet = No inclusion

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A simple message for International Day of Disabled People.

I’ll say it again and again and again until the day I die.

How are we (disabled people) supposed to be included and have opportunities to do the regular stuff (work, education, leisure, travel, family life) and stay healthy if we can’t go out because there are no usable toilets we can access.

No toilet = no inclusion = a message ‘we don’t give a &*£@’.

We need things to change NOW please.

Yours Sincerely, a person who can rarely find a usable toilet.


 

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This toilet needs your help

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What if toilets had feelings?

Toilets need your help, today.

Today we bring you a toilet and a sink which have not been treated equally like the other toilets.

Left neglected and abandoned by their owners. No toilet should have to be this way.

They have been incapacitated by the lack of care and maintenance given to the ‘regular’ toilets and if they could ask for your help – they would. They are crying out in desperation.

All they want to do is provide a safe, hygienic place to go to the toilet. A place of comfort and dignity. Many will see only pain, tears and distress. Wrong fittings, missing support rails, cramped spaces … the list is long. All they can do is watch helplessly.

Today a frail elderly man fell because there was no support rail – and no emergency cord to get help.  I felt responsible.

Yesterday a severely disabled little boy had to be changed on the floor, right next to me and the bin. He was too heavy for the baby changing table.  I kept willing him to try not to wave his arms around and touch me because of all the germs. Of course he couldn’t help it. My heart was breaking. I wanted to help. There was nothing I could do. My room didn’t have anything better to offer.

[Anonymous Toilet in Kent, UK]

Isolated

People stay at home more where they have fully accessible bathrooms – leaving toilets like these isolated and lonely.


We can change things

Act now and together we can change things. You can do something to help toilets like this.

Customers – tell people what is wrong. It costs you nothing and provides businesses with an opportunity to put things right.

Managers and architects –  offer hope to these poor toilets.  No toilet should have to suffer this way.

Just £67 could buy this toilet room a new tap or fix the existing one.  £100 could enabling local people to fix the flush and understand why it needs to be reachable from the space beside the toilet.

 

 

You could use ‘Euan’s Guide’ cards to remind people not to tie up the emergency cord and take away help from people who might desperately need it.

[We took the opportunity to provide one for the ‘accessible’ toilet at the Fairway pub, Ickenham, Middlesex featured in our video]

Save a life

You could save a life and help toilets provide a safer, cleaner and more dignified experience for their users.

Thank You.


World Toilet Day 2015

World Toilet Day is THE day for action. It is the day to raise awareness about all the people who do not have access to a toilet, and the urgent need to end the sanitation crisis. And it is the day to stand up (or sit down or squat if you prefer) to do something about it.

The bare foot challenge…

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Take a photo (of your feet) standing bare foot on your toilet floor – then share it on social media and add the hashtag #barefootchallenge to join in.

Petition and challenge information 
Nominate friends or do it yourself…. Find out why below.

Why?

Ever stood bare foot on your toilet floor? How about in a public toilet? Not quite so appealing is it? 

I have to be bare foot to be lifted onto a public toilet – so my shoes don’t create more drag. In a public toilet it’s pretty yucky.

Other disabled people have to lie down on the toilet floor for pad changes. 

Floor changing
 This challenge creates awareness and opportunity to sign a petition of support for change – in the form of more Changing Places toilets. These are toilets with a hoist, changing bench and space. They offer hygiene, dignity, safety and equality.

There are very few of these yet they are needed by hundreds of thousands of disabled people. 

Unpicking the news: Paul Vice, amputee, refused access to the toilet

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So, a few days ago, this story appeared in the Plymouth Herald.

http://www.plymouthherald.co.uk/Disabled-Plymouth-war-hero-refused-access-toilets/story-28054407-detail/story.html?

Summary of the story

Mr Vice went into a sports centre and requested to use the toilet. He was refused because staff said members of the public could not use it. He then requested use of the disabled toilet, receiving the same answer.

In the news article we are told that he lost his leg and experienced several wounds whilst serving in Afghanistan.

So this raised some questions in the comments section which we can look at below.

  1. Rules are rules

The majority of responses indicated that, disabled or not, if the rule is that toilets are only for people using the sports centre, then the refusal is appropriate. This is a valid point – but sometimes rules need to be broken for the sake of compassion – a human being was in desperate need of the toilet!

2. Disclosing impairment 

Staff did not know if a) he was disabled or b) what the nature of his impairment was. They had no way of knowing because the majority of impairments/medical conditions are not visible.

If they had asked ‘are you disabled’ or ‘why do you need to use our toilet’, that would also have been rather insulting and embarrassing – but lots of people do fake impairments just to get quick access to a toilet.

Staff are stuck in a no win situation – unable to ‘determine if he genuinely needs the accessible toilet on compassionate grounds and the need to keep toilets free for use by disabled customers using the sports centre.

Should he have explained he was disabled?

Mr Vice felt they didn’t need to know about his leg. If he had explained he was disabled, would that have got a different response? Well, possibly not – if we stick to the ‘our customers only’ rule. However, in terms of disability equality and human kindness – a disabled person might have very few toilets they can use compared to other people and have to resort to such requests. Others may have impairments which cause them to suddenly need the toilet without warning – and it would be inhumane to make someone pee in the street.

We know that Mr Vice can use toilets without adaptations – as these were the toilets he originally requested. Therefore he will have the same access to toilets in other locations as non-disabled people if refused entry.

We do not know whether his injuries have also caused bladder problems – but there are ’emergency’ cards which can be carried to discretely show to people to explain the need to quickly use a toilet.  People can then offer toilets on compassionate/medical grounds to those with urgency problems or similar.

Conclusion

The story highlights the dilemma of staff who have toilets for ‘customer use only’.  However, on compassionate grounds for human beings in need of the toilet, perhaps they should have let him go – because he is human and not because he is disabled.

Not what it said on the tin

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Signage is part of a toilet being ‘accessible’. Regular readers will know that generally I don’t seem to be having the best of experiences at zoo’s lately! I came across a problem which, like my recent trip to Bluewater shopping mall, highlighted the barrier that is signage.

Here is a good example of how poor signage can turn a good day into a frustrating one.

I’ll start with Colchester Zoo in Essex.

I saw on their map they had an Adult Changing facility (with a wheelchair logo). This is what their website says: 

* All 13 sets of toilets around the zoo and at our cafes have disabled toilet facilities.

* An adult changing area for those with additional needs is provided at the toilet facilities near the meerkat enclosure. Please ask for a key at the Guest Services office or the nearby Meerkat Hangout cafe.

Whoopee – easy toilet access. The map didn’t indicate a key was needed so initially we found the toilet block and discovered it to be locked. To cut a long story short, we asked for the key, the key had been lost and another was brought over. 20 minutes later…

We opened the door expecting to see an adult changing table a toilet and a hoist. What we found was entirely different – a bed, a small sink and just enough space to go into forward and out backwards in a wheelchair.

child_changing

The definition of an adult suggests a person aged 18 or older – someone who, if they need a pad changing, is likely to need carers and a hoist to get onto the bed (and space etc).

This space is a step up from laying a child on the floor (where they are too heavy/long for a baby changing unit) but is really not suitable for changing adults. When staff said the room hadn’t been used that day – I can see why.

So we were left with the regular accessible toilet – which wasn’t accessible because the toilet was in the centre of the wall and with my chair at the side – no space to transfer or sit on the loo. Fail.

colchester_loo

Eventually we wandered around and found a toilet that was usable (I say usable, if you class a very steep ramp to the toilet area that I wasn’t happy going up even in a powered chair as ‘accessible’).  Inside the toilet was better – and thankfully we made it.

Bluewater 

Signage fail number two comes courtesy of Bluewater Shopping Centre in Kent.  I knew they had a toilet with a hoist – but I couldn’t remember where. I looked at the maps and they all just had the generic wheelchair toilet symbol on. I was looking for the Changing Places symbol.

Eventually, after doing a lap of the lower floor, I resorted to asking management to tell me where it was – and we found it with a little label outside the toilet saying ‘HDU’ as in High Dependency Unit. I know some people prefer this term as opposed to ‘Changing Places’ (it is a registered CP toilet here) but it confused me.

I thought it was key operated (a sign mentions getting a key) but today the push button door opening switch was half working.

It wouldn’t let you in but once in, the internal button did close and auto lock the door. To gain entry you could force slide the door open (no handle of course!).

The problem was, inside there was no curtain, so I sat on the toilet, opposite the door, whilst my assistant went outside to give me some privacy – only we didn’t realise the door was so slow ….. the 40 seconds it took for the door to open and close felt like an hr.  Not the best experience!

 

 

 

 

 

 

Guide 3 – Going beyond the minimum requirements

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Our third guide can be downloaded from: Links and resources page.

Beyond_standards

Going beyond the minimum requirements

Our 26 page guide looks at why going beyond the standards is often required to avoid discrimination, promote social inclusion and welcome all disabled employees, visitors, customers and volunteers.

We hope you will find the information useful if you:

  • Are passionate about improving the accessibility and usefulness of toilets for disabled people through campaigns and personal discussions.
  • Wish to raise discussions with a business concerning a difficulty you have had accessing or using provided toilets.
  • Are designing or submitting planning applications involving a new accessible toilet or altering existing ones.
  • Are responsible for the maintenance of sanitation facilities.
  • Are planning an event or function and assessing the sanitary needs of potential visitors.
  • Are a business, who provides toilets for disabled staff, visitors, customers and volunteers – and wishes to provide the highest possible standard of ‘away from home’ toilets.
  • Are committed to the welcoming provision of a truly accessible toilet to demonstrate your commitment to social inclusion and equality.

 

Contents

Current types of accessible toilets
Legal requirements
Be aware of ‘Compliant Doc M toilet packs’
Difficulties people have using accessible toilets
How AD M introduces barriers to using the toilet 
Toilet height
Support / grab / hold rails
Barriers relating to support rails
Privacy
Space considerations 
Space is needed to do a range of activities in the toilet.
Space requirements in the Building Regulations. 
People who are unable to stand or balance on a toilet.
Barriers to using the toilet, in the minimum provided space.
What research tells us about the size of wheelchairs.
Inadequate space to transfer from the side of the toilet.
Space needs of Carers / Assistants.
Turning circle space inadequacy
Baby Changing and Odour sensitivity.
Emergency cords tied up or not present.
Ensuring the toilet is available.
Assistance with hygiene.
Thank you to: 

 

Guide 2 – What makes a toilet accessible?

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Our second guide can be downloaded from: links and resources page.

What_makesWhat makes a toilet accessible? An introduction to the needs of disabled people and assistants/carers.

A 30 page guide providing a brief introduction into the facilities that should be provided in a public accessible toilet to ensure dignity, safety and equality of toilet and hygiene provision.

We hope you will find the information useful if you:

  • Are passionate about improving the accessibility and usefulness of toilets for disabled people.
  • Wish to raise discussions with a business concerning a difficulty you have had accessing or using provided toilets.
  • Are building a new toilet or upgrading your existing facilities.
  • Are responsible for the maintenance or cleaning of sanitation facilities.
  • Are designing or submitting planning applications involving a new accessible toilet or altering existing ones.

 

Contents

About this Guide
Contents
Toilet types and signage
Three types of toilet
Legal requirements
Disability Equality
Building Regulations and British Standards
Health and inclusion
What should I find in a new accessible toilet?
Unisex, individual accessible toilets.
Changing Places toilets using BS 8300 (2009)
Accessibility features
Door entry and locking
Lights and accessories
Toilet height and seat type
Washing / drying toilets
Other accessibility features
Examples of a stylish toilet that is not accessible
Sinks and their function
Use of toilet paper
Facilities for people with bladder and bowel disorders
Availability – an important part of accessibility
Provision for people to manage their bladder/bowel
People who have an ostomy
Using the toilet whilst standing, or sitting in a wheelchair.
People who use a hoist
Needs of Carers / Assistants
People with other needs
Privacy
Stigma
Thank you to…

 

*AD M = Approved Document M.  This is available from the official planning portal web-site [http://www.planningportal.gov.uk] for the most up to date information and documents.

Launching 3 exciting publications

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Today we launch the first of 3 new publications that you can download from our links/resources page

Legal_requirements

Guide to Accessible Toilet Standards and Equality Act Requirements.

This 17 page guide is to help raise awareness about the standards, guidelines and equality laws surrounding the provision of toilets for use by disabled people and their carers/assistants.

We hope you will find the information useful if you:

  • Are passionate about improving the accessibility and usefulness of toilets for disabled people through campaigns and personal discussions.
  • Wish to raise discussions with a business concerning a difficulty you have had accessing or using provided toilets.
  • Provide toilets for disabled staff, visitors, customers and volunteers – and wish to provide the highest possible standard of ‘away from home’ toilets.
  • Are committed to the welcoming provision of a truly accessible toilet to demonstrate your commitment to social inclusion and equality.

 

Content

British Standards and AD M 
When do AD M requirements apply?
What if a new toilet does not follow these standards?
Types of accessible toilets 
Equality of toilet provision – what the law says. 
Be aware of ‘compliant’ suppliers
The duty to make reasonable adjustment and AD M
Do I have to follow the solutions in AD M?
Employment law
Human rights
UN Convention on the Rights of Persons with Disabilities
Making adjustments 
What reasonable adjustments might include.
Auxiliary aids or services
Attracting customers and improving community inclusion
Facilities on request.
Thank you to:

*AD M = Approved Document M.  This is available from the official planning portal web-site [http://www.planningportal.gov.uk] for the most up to date information and documents.