Draft of BS 8300 -2 available for comment

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British standards are helping businesses thrive. Some of them define access for disabled people outside and inside public buildings.

What is a British Standard?

Standards define best practice in many different areas. They’re put together by groups of experts and come in a number of different kinds, from a set of definitions to a series of strict rules. 

… Standards are not the same thing as government regulations, but they’re often used in legislation to provide the technical detail.

(BSI, 2017)

Standard BS 8300 defines access requirements from ‘set down points’ in car parks to the distance to the toilet or width of lifts. There is a section about toilet access, dimensions, fixtures, fittings etc which is best practice. 
A new draft for BS 8300 is available to read and comment on. There are two parts – the toilet section is on 8300-2.

Link to draft BS 8300-1 and BS 8300-2 (enter 8300 in the search). 

Time for a Change?

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The campaign for toilets with an adult bench, hoist and space for 2 carers resulted in the Changing Places Consortium being formed 10 years ago.

Whilst significant campaigning (largely by individuals with varying styles and mostly by parents) has resulted in the provision of over 850 of these toilets, we wondered whether it’s time for a change? 

Campaign success?

There is no single campaign or campaign  strategy for changing places – individuals can do whatever they want. This makes the campaigns disjointed and dilutes or replicates efforts. You see this regularly across the multitude of social media accounts/Facebook Pages and private blogs identifying themselves as campaigners using the CP symbol. Whilst Aveso and the Consortium generate information sheets and ‘Selfie Kits’ etc … there is a blurring of who or what is the ‘official’ approach. 

Protecting young people

Take the recent episode of parents who collected and posted pictures on the Internet of children (and other people’s children and young adults) on the toilet floor, face showing and wearing incontinence pads. Young people unable to consent to this undignified use of their image. If a school or care business did this it would be a serious child protection and human rights issue. However, when I raised this as a concern the Consortium said parent campaigners are not affiliated with them and can do as they wish. This didn’t stop their official social media accounts from sharing the images.  Mixed messages ensued across multiple Internet forums. The rights of the child were lost amidst the the cause, angering many disabled people.

Would not the responsible approach be to support campaigners with training in methods and ideas which protect the privacy and dignity of children? Just because dignity was lost in being on the floor doesn’t mean the indignity should be extended by their image being shared.  Is this the sort of campaign that can only achieve success by using increasingly shocking images? Thankfully many people did indeed use their creativity and there has been a reduction in the use of children as dignity martyrs – and so individual efforts continue and the campaign actively promotes them. 

Pen v. sword?

Individuals can approach companies in any way they want ranging from polite letters and personal conversations to social media harassment. 

It is likely that as much harm as good has been done with these tactics which has divided campaigners for toilet equality.  How can you have a meaningful, positive conversation when the previous contact they had with a campaigner was focusesd on personal anger, emotion and frustration. 

It’s easy to get angry when you have struggled that day in a cramped toilet and are gathering up your evidence to make a complaint or have ‘that’ conversation. You want to throw the book at them, yell at them. You want to drag them into the toilet and make them see what you have to go through. You want them to empathise and make things right – but all you get is a ‘sorry you were unconvenienced’ letter to fuel the next stage of complaint. 

It’s hard not to let personal emotions damage your chances of negotiating an agreement to provide a toilet you and thousands of others can use. However, we have to remain polite, persistent, factual and professional. Unfortunately not all campaigners do – and that’s a big problem.

Time to rename and rebrand?

Many have kept their distance or tried to move things on locally. There have been issues with Changing Places being built that fall short of the recommended guidelines of 12 sq metres. That said it is a guideline. Some felt a smaller room was acceptable and out sprang the Space to Change campaign with its own logo. Then things became problematic with determining which ones were listed on the CP toilet map.

Recently a local campaign for a new branding of ‘Hoist Assisted Toilets’ has gathered momentum. In fact, one of the problems with the CP toilet was that they were very focused on the needs of people who used incontinence pads. This alienated (in name and focus) people who were continent but needed a hoist or those who needed a bit more space or other equipment. People didn’t like asking for a Changing Place due to the remaining stigma of incontinence. 


This has led to CP toilets being called other names including ‘high dependency unit’, ‘Space to Change’, ‘Adult Changing Room’ etc. It’s confusing and has resulted in staff and visitors talking cross purposes and toilets not being found.  If there was a single campaign with good leadership, one name, one symbol and one strategy then we might have more of these toilets.

The future of toilets 

The result of the above could indicate that change is needed in many areas if we are to benefit from more Changing Places toilets in the UK.

When is a Changing Place not a Changing Place?

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A somewhat heated debate has begun regarding Changing Places – toilet spaces which include a hoist and a bench for disabled people.

Partly this is due to two things:

  1. A new type of toilet called Space to Change
  2. Changing Places being built which do not meet the British Standard for space requirements.

Toilet_scale.jpg

Space to Change

Space-to-Change-Closomat_360_360_int.png A campaign from Firefly, and supported by Clos-o-Mat, is promoting a toilet with a 7m square Space to Change (3m x 2.5m min). This space has a hoist, changing bench and many of the facilities you would find in a regular wheelchair accessible toilet.

The campaign has been going since 2014 and this minimum size and fixtures/equipment is a useful alternative for businesses who just don’t have the space for a Changing Place.

Clos-o-Mat provide more information on this section of their web-site.

They are to “bridge the gap between typical ‘Document M’ accessible toilets and the ultimate, a Changing Places facility”.

It is marketed as a ‘if you have to provide a wheelchair accessible toilet then you might as well add a bit of extra space for a bench and a hoist’.

Advantages

  • This seems very sensible as the reality is that small venues may simply not have space for a large CP toilet layout which has a minimum of 12 m square.
  • Might encourage more toilets to move from Doc M basics to Space to Change.
  • Costs may be less

Disadvantages

  • Not currently referenced in Doc M (will it be included in the future?) unlike CP toilets. CP toilets are mentioned as desirable.
  • Not included in the current British Standard like CP toilets are.
  • Hoist may be a portable hoist – which in this small space, might make it unusable for people with extra large powered wheelchairs and two carers, or moving between toilet and bench via hoist.
  • Large venues like stadiums and shopping centres/leisure complexes might drop down to this small format when they could easily accommodate a full CP toilet.
  • Should not be listed on the CP toilet map – but maybe the map should include CP and STC toilets? I personally don’t want to trawl through two separate toilet maps or lists of different ones held by two organisations to find a toilet.
  • Changing benches do not have to be height adjustable.
  • A large waste bin for pads is not specified aside the regular bin inclusion for sanitary waste and a ‘waste bin’ found in regular toilets.

It is important to note that neither a CP or STC toilet are required within the law for building regulations.

Further debate on the size of installation…

People are spotting toilets included on the CP toilet map which are smaller than the British Standard. It is worth noting that in the early days (prior to June 2013) of CP toilets, the standard was 7 m square – and are included on the map. Many people are getting these confused with ‘Space to Change’ toilets going on the map.

A more recent (2014) installation at Emirates Stadium is said to be smaller than the CP standard yet heavily promoted as a full CP toilet.  From the photos it does look a lot smaller than standard.

For other people, branding is a big issue – some toilets using the CP symbol where no hoist exists and other CP toilets calling them other things like ‘Adult Changing Room’ and ‘High Dependency Unit’.

I have been in small changing places fitted before 2013 – and space was an issue. However, often the layout is poor – space is more about location of equipment not just physical room size. My bathroom at home is fairly small yet I still have room to hoist with carers.

What we found out

So, the debate continues, meanwhile the new British Standards are being looked at and we had the opportunity to submit thoughts and recommendations from our readers and project contributors.

There was a clear need for a range of toilet spaces in size and equipment for small buildings. Also that in larger buildings such as cinemas, stadiums, shopping areas, hospitals, parks/tourist venues and large work places – then even a full CP toilet isn’t meeting people’s needs and that the Standard needs to be raised to support the large number of people who need adjustable toilet risers and washing/drying bidets.

 

 

 

 

 

 

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

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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.

Review: New Changing Places toilet map

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ToiletMap

Yesterday the new Changing Places Toilet Map came on-line at http://changingplaces.uktoiletmap.org so we thought we’d take a look and give a first impressions review.

What does the map offer?

I first viewed the new website on a desktop – but the mobile version is pretty much identical.

The layout is clean and simple – it does look rather good.

Visitors are offered 1 of three options.

  1. Find a Toilet
  2. Plan a Journey
  3. Create an account to save favourite locations and routes (or send them via e-mail to yourself).

Lets try option 1 – Find a Toilet.

Naturally I know all the CP toilets in my home county – so first I searched for ‘Kent’.

As I typed, options of places with the letters ‘kent’ popped up to select. I left it as ‘Kent’.

What is interesting is that depending on the Zoom setting in your browser, depends on what information you get.

For example, on Safari, the address/location listings read:

Zoom

I expected all the listing to be in Kent but areas around the border were coming up and many outside of Kent were listed below Zoom setting 3.

Zoom 3 showed up 10 Kent addresses alongside a Google map of all locations and appears to be the one which keeps the format of the site intact.

This was the map that I saw (Click on the beneath image to enlarge it).

ToiletMap

Toilet details

I clicked on the icon in Maidstone Town Centre – the location was accurate and on clicking again it brought me to a page with a detailed close up street level map, phone number, facility features, opening hours and additional information.

I could not find any picture of the toilet area / entrance or similar for this toilet. There is a feedback button which you can click and it shows you this form:

 

ToiletMapFeedback

 

I like the form – quite simple and clean looking. However the options to ‘save’ or ‘cancel’ were confusing. If ‘Save’ actually sends the form then this should be made more understandable  – and it’s not clear were the feedback goes.

Pressing the back button on my browser, I thought I’d get back to the map of the toilets in Kent but I was returned after 3 clicks backwards to the home search page which was frustrating.

However, going through the same pattern for other toilets did return me to the list of Kent toilets – so perhaps a bug in the system?

Whitstable has a Changing Places that opened in August his year (shown here in the local news) but this is currently not listed (maybe not registered yet?). Any CP toilet that is not registered does not go on the map.

Pictures: Looking at other toilets on the map, some had pictures but the thumbnails didn’t seem to enlarge at all on my browser.

Plan a Journey

This function is also called ‘Plan a route’. Personally I’d have kept the language the same throughout the site as a matter of good practice.

So, let me plan a journey to my hospital in Oxford as the Oxford Radcliffe NHS Trust doesn’t have any place I can go to the toilet (no hoists/CP toilets).

First off, the route takes me pretty much the way we go, along the motorways.

It does indeed show me the toilets along the way – although each is a good hour detour and one would have me visiting the airport. This is not a map fault – just that there are are only around 2 CP toilets next to motorways at service stations in the whole of the UK.

Now, if I’ve been to the hospital and waited there for 4 hours and need the toilet – its a long drive to the nearest toilet: Buckinghamshire!!

 

ToiletMapOxford

 

The route system allows you to plan waypoint i.e. tell them you want to go via a certain town etc.

You need to check each toilet on route because depending on what time or day of the week that you travel, some toilets are only open certain times of the day or only on certain days.

It can also tell you walking and cycling routes. I found this rather funny considering this is me on a cycle and the distance you have to go to find a CP toilet in most parts of the UK would not be so pleasant for my husband!!

cycle

 

Other parts to the site

There is a Frequently Asked Questions section – not specific to the map but including things like how to install one, how much it costs, managing security and possible funding sources. The information is really good but not really aimed at ‘users’.

The front of the website shows you the current number of registered CP toilets – fingers crossed we see more and more every month.

Registration – extra functions.

Verified by e-mail, I registered my user name, e-mail address and signed up.

I clicked on the verification e-mail and logged in very quickly – took less than 10 seconds.

I could now save favourite toilets and routes and have details e-mailed over to me in seconds. My routes had a new ‘add route to favourites button’ and ‘e-mail info’ button.

Overall first impression

A much improved web site experience which is easy to use and clear to understand. Larger photos and a greater photo collection would be even better and perhaps users can enter extra information  to be added via the included form. Over time it would then get even better e.g. info such as the CP toilet in Dartford also serving the theatre (same venue building) but is accessed via a lift which needs to be working. I only know this because the day I went to the theatre the lift to the toilet block was out of order!!

So come on businesses – fill the map up with thousands more toilets because we really need them.

 

 

 

 

 

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. 

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!

 

 

 

 

 

 

Why don’t NHS hospitals have accessible toilets?

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Elderly man with a walking stick holding his hand up to his ear.

What’s that? Don’t talk rubbish. Of course the NHS have accessible toilets for disabled people in all of their hospitals. Don’t they?

You would think so, and yes they do have ‘accessible toilets’ that display the wheelchair symbol on them.  The problem is not many disabled people can easily use these toilets because of the nature of their impairment.

  1. some can’t use them at all
  2. many toilets don’t even meet the building regulations for sanitary provision known as Document M – and the basic regulations don’t cover people like me who have weakened arms and legs.

What if you can’t use the toilet?

Without my husband being present (taking time off work to assist me), I am one of around an estimated 230,000 people who can not use any of these toilets.

I either don’t go out or in the case of my health care appointments/emergencies – my husband must be present lifting/dragging me from my chair, onto the toilet, and propping me up so I don’t fall off. I can not stand or use my arms. It’s very scary, often dangerous for us both and undignified.

Building_reg_toiletThis is a cropped picture provided by building regulations outlining suitable toilets.

It has the outline of a wheelchair (a small sized chair) marked.

How on earth are 1-2 carers and a portable hoist supposed to fit into that space!  The outline of the wheelchair is also a lot smaller than mine (and I’m only a small adult!).

Even if you can stand or use your arms  – you would have to be pretty agile to get from your chair to the toilet independently. Yet as you will see later – this is the ‘standard’. Pretty unusable hey?

Things could be better…. a solution exists.

There are only 23 NHS hospitals in the UK where I can use the toilet, with my assistants.

They have what are known as ‘Changing Places’* – a toilet which has lots more space, a hoist, a changing table for adults and children, privacy curtain and sometimes automated washing and drying /bidet facilities to manage continence in a dignified manner.

*updated list of hospitals providing CP toilets at the end of this blog.

There are no Changing Places toilets in the hospitals I attend.

Many disabled children have to be manually carried/lifted and changed on the floor of toilets or find a free bed – because they do not provide changing tables other than for babies.

Dawn Kelleher describes her recent visit to the newly built Hospital for Children in Cardiff.

Guess what…. Nowhere to change my daughter. All they could offer was a consultants room and a commode with a cardboard pot! They’d never even heard of a changing places toilet. I’m fuming.

Rachel George explains:

I will not change my son on the floor of a public toilet. So we have found other ways, painstaking ways which are really difficult for us but keep him clean and safe from the germs and filth on the floor of a public toilet. My son cannot sit unaided or stand at all but he needs the toilet just like the rest of us.

On our recent trip to a hospital 200miles away for our 8 year old son’s first spinal rod lengthening procedure we had no option but to put him on the toilet in the back of our car. It is a physically difficult experience for us and not really dignified for our beautiful boy either.

 

If venues like zoos, stadiums, leisure centres, shopping centres, council buildings, railway stations, museums and even a pub and a few supermarkets can afford these facilities – then the NHS has no excuse.  You can see the full register here.

Lack of toilet and hygiene facilities should not be a barrier to health care and emergency treatment. It should not be a barrier to being employed by the NHS, volunteering at an NHS venue or a barrier to visiting or accompanying someone in hospital. This is a social and human rights issue thats needs legislation to resolve.

My blog below, highlights, through my experiences, the problems many people face – and the solutions which exist to provide accessible sanitary facilities for disabled people.

For more information about Changing Places visit http://www.changing-places.org

For petitions to improve toilet facilities you may want to consider signing Sarah’s Petition or Samantha Buck’s Petition or Tony Clough’s Petition


Using the toilet requires a lot of ability – do you have what it takes?

Let’s think about the strengths you need to be able to use the accessible toilet. It requires many actions of pulling, pushing, bending, grasping, reaching, twisting, flexing arms and legs, using fine motor control, core balance skills, coordination – and energy!

These are just some of the things you need to be able to do for this ‘simple’ task.

Ability to:

  • see where the toilet room is – and get to the door.
  • raise an arm (or equivalent) and grasp and pull the door open (perhaps against a strong spring), manoeuvre through the door, close it and manage the lock.
  • see where the toilet/sink/light switch is.
  • turn and position yourself (especially if you use a wheelchair, frame, cane etc).
  • move waste bins and other objects out of the way.
  • bend, grasp, lean and balance to successfully remove trousers / pants, lift skirts.
  • lift yourself out of your wheelchair and onto the toilet (or lower yourself down in a controlled and stable fashion if standing).
  • onto a grab rail (balance, grasp, extending arms/raising limbs) [and be able to pull down the grab rail if in the upright position].
  • balance (often for extended periods of time) to urinate/defecate
  • reach and grasp toilet role and twist/reach to wipe thoroughly
  • stand up or transfer back into your wheelchair, if used or reach for cane/frame etc.
  • maintain menstrual hygiene or change a sanitary towel or a soiled pad
  • get clothes back on
  • reach and push on a flush handle/button
  • turn on a tap, reach the sink if you haven’t already washed your hands/equipment.
  • manipulate soap and water to cleanse hands properly
  • hold hands in the air under a dryer.
  • see the door, open the lock and exit the toilet.

As you can see, vast numbers of people would find many of these tasks challenging.

So few people speak out.

old_manOver 12 million people in the UK have an impairment(s) which affect the senses, coordination, dexterity, grasp, mobility, strength, balance, cognitive understanding, continence and energy levels.

4 out of 100 adults (1 in 5 of women over the age of 40) have urinary incontinence and 1 in 10 people will experience bowel incontinence at some point in their lives.

Many of my friends with epilepsy, autism and mental health conditions also need to use these toilets – especially for the emergency cord provision.

Women in their last months of pregnancy also benefit from improved toilet provision.

A ‘standard’ accessible toilet is simply not suitable for so many people – but being about toilets and that taboo that still surrounds the need to pee, poo and menstruate, few people speak out about their dissatisfaction or difficulties – so things really need to change.

How I mange to use the toilet

So, here is what I need (and have at home) – is this too much to ask for?

  • I can’t walk – so I need a toilet space that is accessible in a powered wheelchair. 
  • I can’t stand up and my arms are weak – so I need to use a hoist to lift me out of my chair and onto the toilet.
  • I need space for an assistant to come in with me and help me use the equipment.
  • Also I don’t have much grip or body movement and have bowel incontinence – so ideally an automatic wash and dry toilet would be available for maximum dignity and cleanliness.

Such facilities exists – they are called ‘Changing Places’. They also have privacy screens, changing tables (useful for pad changes, self catheterisation,  or if you need to sit or lay somewhere else to remove clothing) and some have shower/cleaning facilities. Changing Places  shared this photo of an excellent facility at London Gatwick airport with automated toilet/washing/drying facilities.

Julie Clough and her mother Margaret at a CP toilet in London Gatwick.

 

How many NHS hospitals have these toilets facilities?

As of today, there are only 23 buildings in the UK which have changing places toilets for NHS patients, staff, volunteers and visitors who need these types of facilities on the register.

None of the hospitals or clinics I attend have any toilets I can use. I have listed NHS hospital who do have a CP toilet at the bottom of this blog.

Hospital Response

Accessible_Toilet_Sign-2I mailed each of the hospitals I attend and asked their PALS team what I should do if I need the loo, explaining my predicament.

This was their response, in summary.

  • Guys and St Thomas’, London

At first they didn’t understand and suggested my GP refer me to OT services, then when I further explained I had these facilities at home but needed to know what to do at the hospital. They contacted the Head of Buildings and Maintenance and thought that the staff caring for me at the hospital were responsible. They kept in touch and a few days later said they currently have no CP toilets but some are planned for in St Thomas’s. They offered to liaise with staff at Guys to make them aware of my needs.

  • Maidstone & Tunbridge Wells NHS Trust

Estates and Facilities were very unhelpful. They told me “power chair access to the toilet is permitted” and manual wheelchairs are on site to use. Toilets with regular seats (I asked for a toilet and not a commode) are situated in toilets compliant with the building regulations. Hoists are used on site but no offer of where they are, how to use them and what toilet they would fit into safely.

They felt that the standard accessible toilet was big enough for carers to assist in. They have no bidet/washing facilities to manage incontinence.

This response clearly shows a total lack of understanding about the needs of disabled people. I was appalled and dismayed as this is also my local A&E – if I am ill or injured, or my family are, I don’t want to have to be describing my toilet needs to someone and have to wait whilst they figure out a solution for every visit.

  • Royal Brompton & Harefield NHS Foundation Trust, London

Waiting for a more detailed response but they have been in touch and will look into arrangements for my appointment next year.

  • Oxford University Hospital Trust – no reply yet.

My current strategy

Currently, my husband has to take a day off work to come with me to all my hospital appointments. Many of them he would come to anyway – but not all. If he became ill or injured I could not attend any appointments because I would need the toilet – and there would be nowhere to go.

Currently we have to locate a toilet with enough space (not all accessible toilets have the same amount of space), and he has to lift me out of my chair and onto the toilet (stepping around sinks and other obstacles we can’t move out of the way).

I go to the Royal Brompton Hospital in London – for my respiratory check ups because I use a ventilator to breathe for me a lot of the time.

The toilets are a nightmare. There are lots of clinics with very sick or immobile people who desperately feed back to staff about the lack of shower and toilet facilities – only to be told (according to the notice board in the corridor) that the building is too old to change.

Well, I go to a clinic held in the shell of an old fire station – the inside was gutted and turned into a sleep clinic with an accessible toilet.

IMG_5290This is a modern building interior but still a very small space. I could barely turn around without hitting the wall or the sink and there is no horizontal grab rail on the left hand side. Luckily I lean to the right to prop myself up on the rails. In the other building the lack of grab rails on the right means we can’t use them at all. I have virtually no balance – sometimes I have had to lean over sanity towel bins to stay upright. Pretty disgusting.

You can also see the emergency cord is tied up – which is inconvenient if you have to then go out of the loo and find a member of staff to untie it. This is a common problem lots of people tell me about. We have to take off my tray, footplates and some clothing – there is no space to place it so I have to sit them on top of the bins or on the floor. Yuck.

 

 

IMG_6043As you can see, I can’t get right along side or 90 degrees to the toilet – popular positions for wheelchair users to do safe self-transfers.

My chair is as far back as I can go, blocking off the grab rail on the right hand side from coming down from the wall – so I have to lean on my wheelchair. My ventilator is also getting a bit squashed hanging on the back of my chair. My chair is only 2/3rd of the size of most power chairs – so they probably wouldn’t fit in at all.

As my husband lifts me, he has to drag me sideways and backwards to the toilet seat because of this layout – avoiding the sink that sticks out in front of the toilet (which he often hits his back on).

This is how we manage when outside of the house.

 

In the other building they do have a wash/shower room with space for a portable hoist – but the toilet is located between two walls (rather like a cubicle) so no room for assistants to get along side to help with positioning. You also have to go and find a hoist – it isn’t kept in the room so in theory someone else on the ward could be using it.  It’s also the only toilet room,  of this type, to serve many wards.  When each toilet trip can last 20-40 minutes – this can mean a long wait for other people – not good if you have urge incontinence or a dicky tummy!

We tried another toilet once – but the floor surface was very smooth, slippery and dangerous and we were told for health and safety reasons they couldn’t provide a non-slip mat to stand on!!!

Night from Hell

Basic_Commode_ChairI had to stay the night once and do a sleep study. I had explained that I couldn’t sit on a flat seat commode in advance  – but they provided no alternative. Because of my lack of muscle, my entire upper body rests on two bony ‘bits’  – part of my pelvic bones. The equivalent would be to get to you balance your body on your elbow points – on a hard surface. You would probably pass out after about 30 seconds as the nerve and bone pain is excruciating – so much so it is a method of torture in some countries. That is what I had to endure – twice, because the first time the pain was so bad I couldn’t empty my bladder. There I was, in agony, with my legs balanced on a suitcase for stability, torso hunched over my lap trying to pee. It was hell. I had pressure sore pain for weeks after.

Locally

Seeing my GP is also tricky – they were running over an hour late once and I was desperate for the loo by the time I got home. I nearly had to abandon my appointment as the urge was too much. Holding your bladder can give you pain, nausea, vomiting and heart palpitations and push urine back up into your kidneys. So, going to the GP could make me sick!

Essentially, without access to a toilet with a hoist in it, I can’t visit any NHS building with my assistants – unless I hold myself.

Solution

Disabled people have the right to be able to use the toilet in the manner that other people do – as and when the need arises, in a way that is hygienic, safe, dignified and as pain free as possible.

Not having suitable toilet facilities denies people access to routine and emergency healthcare.

We need legislation so that all NHS hospitals and treatment clinics can have a Changing Places Toilet with hygiene / cleaning facilities for anyone who can’t manage in a standard ‘accessible’ toilet.


If you found this blog insightful or helpful, please comment, like or let me know – thank you.


Locations of current toilets:

In England, the first hospital to have one was the Royal Hallamshire in Sheffield for patients, staff and visitors.

There are now toilets in (updated 22 May 2015):

Hospitals with a CP toilet

1 Barrhead Health and Medical Centre
2 Harold Wood Polyclinic
3 Ninewells Hospital and Medical School

4 Preston SMRC Specialist Mobility Rehabilitation Centre
5 Aberdeen Community Health and Care Village
6 Aberdeen Royal Infirmary
7 Addenbrookes Hospital
8 Blaydon Leisure and Primary Care Centre
9 Broadgreen University Hospital
10 Chorley & South Ribble District Hospital
11 Darlington Memorial Hospital
12 Dr Grays hospital
13 Finchley Memorial Hospital
14 Glen loch Centre, Whitehills Hospital
15 Great Ormond Street NHS Trust
16 Hornsea Cottage Hospital
17 James Cook University Hospital (The)
18 Leighton Hospital 
19 Lynebank wheelchair clinic, Lynebank Hospital
20 Norfolk and Norwich University Hospital NHS Foundation Trust
21 Northampton General Hospital
22 Nottingham University Hospitals NHS Trust, City Hospital
23 Nottingham University Hospitals NHS Trust, Queen’s Medical Centre
24 Royal Hallamshire Hospital
25 Royal Liverpool University Hospital
26 Sheffield Northern General hospital
27 South Bristol NHS Community Hospital
28 South Liverpool NHS Treatment Centre
29 Stafford Hospital
30 Trelawney Wing, Royal Cornwall Hospital
31 University Hospital Wales
32 Victoria Hospital, Fife
33 Woodend Hospital
34 York Hospital
 
Not a full CP toilet but either a hoist or bench provided.
 
  1. Diana Princess of Wales Hospital, Grimsby (Bench and hoist) in Assisted Living Project
  2. Sheffield Children’s Hospital (Bench and hoist)
  3. London Everlina Children’s Hospital (Bench and hoist)
  4. West Kent Wheelchair Clinic, Cox Heath (portable hoist and large space)
  5. South mead Hospital, Bristol (is this the same as South Bristol?) (Bench and hoist)
Due in the next year or future
  1. St Thomas’, London
  2. Cardiff Heath Hospital
  3. Norton Hospital, Swansea
Discontinued or plans fell through
  1. Wrexham Maelor, North Wales?

The back stage tour at the 02 – aka where is the loo

Standard

IMG_4417

On Thursday we went to the O2 Arena in London for the first time to see a concert. All we knew was that doors opened at 6.30 so we arrived extra early to go for a meal.

The dome has eating venues inside it, which circle the central arena (which also has it’s own food hall for event ticket holders).

The plan was to use the Changing Places (CP) toilet. Whilst the location of the loo is given (both on the 02 and CP website), it became meaningless as it said Block 106 Level 1. We couldn’t find ‘blocks’ mentioned on the maps inside the venue or where this was in relation to our accessible seating in the actual arena.

We also didn’t realise that the loo is just for the Arena (and not for the cinema or restaurants within the dome, but outside of the central arena).  This means it’s only really available from door opening times if you have event tickets and request an access key card.

As the doors were closed we asked a few people who seemed to be ‘sign-posters’ and they didn’t know what a CP toilet was and tried to send us to the cinema accessible toilet area. Eventually, we found a desk of some sorts tucked back out of view to the left of the arena doors.  The person did say they were on level one and that we would be shown up to it because people weren’t allowed in yet and their was security about every 20 metres.  So we waited about 10 minutes for our security escort.

Then we went on a backstage tour with our guide … to a standard loo. We explained we wanted the CP one and the guy said oh the ones on level 1 – follow me. *sigh

So we had to do the backstage tour in reverse, into a staff lift, and up to level 1. Entry to the loo was by key card and the security guy loitered in the lobby to escort us back down.

The toilet was slightly bigger than the regular accessible toilets – but one of the smallest CP toilets we have used,  There was  only just enough room to place my chair to the side of the toilet for a transfer (we were using manual not hoist transfers that night). So, it was a little disappointing on space available for my particular needs.

There is also a speaker system in the loo for public and staff announcements and they pipe music in which makes it hard to communicate with assistants during the moves/lifts etc.

The toilet is a regular one (no bidet / auto cleaning)

However, it was much better than the none CP one we glimpsed on the way in.

We then had to be escorted down in the public lift to the entrance to have our tickets scanned (doors were now open). We had now done a full loop which had taken 40 minutes of walking time all in all.

We then did the back stage tour again – this time to get to our accessible seating on the ground floor. We had a good view – but would have needed a full escort again to take the staff lift to level 1 if we needed the loo again. That is exactly what we had to do at the end of the evening.  We had done so many laps of the back corridors that security staff now greeted us with a ‘hello again’.

All in all, regarding toilet facilities, it is great they have CP facilities but a shame they are not easily accessible from outside the central Arena, and are not easily and quickly accessible from the ground floor accessible arena seating.

Now that we know what to expect, we won’t go so early next time, so that we can time the loo for door opening times.