Launching our new campaign

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Today we launch our new campaign #BiggerIsBetter [Bigger Is Better].

We hear over and over again how much people struggle with the size of wheelchair accessible toilets.

Unfortunately, the size suggested by building regulation guidance is far too small for the types of wheelchairs and scooters that people use today.

We need to raise awareness and explain why meeting  building regulations does not mean they are meeting their legal duties to provide usable toilets under the Equality Act [Disability Discrimination]. Very few businesses are aware of this.

Wheelchair users can often not get into these toilet spaces, turn around or transfer safely. They become unusable. An unusable toilet might as well not be built.

Every toilet that gets built to this size could mean decades of  being unable to use that toilet. If nothing happens now – the future will remain bleak.

If the standards are not going to change, then the only way forward is to reach out to as many businesses and new developments as possible and encourage them to see that bigger is better.

 

We need to encourage larger spaces and where possible Space to Change or Changing Places. Without larger spaces, wheelchair and scooter users will continue to struggle to live as equal citizens in the UK.

Please join the campaign and help spread the word. Share our posters, pictures and your experiences.

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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

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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.

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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.

New report: Toilet access within the NHS

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Disabled people of all ages, and those who support them, are putting their health at risk because of lack of usable toilets within NHS hospitals and clinics.

Inaccessible toilets at UK hospitals and clinics are also having an impact on the health and recovery of people who may not identify themselves as a disabled person. People with dementia, bowel/bladder disorders, those receiving treatments for cancer or heart/lung disease, rehabilitation therapies or mental health illness for example.

Our 43 page report with a summary of key findings (below), brings together the experiences of patients and families.  

Contributors all have a long term health condition or illness which makes it difficult or impossible to use the toilets currently provided. 

Download the report from the link below.

NHS Accessible Toilet Report 2016

We a very grateful to everyone who participated, providing much needed insight of the urgent need for equality of toilet provision, within the NHS, to support physical and mental wellbeing.

 

Key findings 2015-2016

Stigma

  • Due to stigma, embarrassment and sometimes cultural or gender reasons, patients and visitors rarely complain about difficulties accessing/using the toilet or sharing their experiences.

Rights and Equality

  • Provision of toilets are the most overlooked Human Right contained in the European Convention on Human Rights and the UK Human Rights Act.
  • Access to sanitation is a Human Right being ignored within the NHS.
  • Equality Act duties are not being met because a worse standard of toilet provision is provided for disabled people with no reasonable adjustment.
  • Patients who do not meet the Equality Act definition of ‘disabled’ are also affected by lack of facilities due to short term illness, injury etc.
  • NHS buildings are failing to meet building regulations or strive for British Standards. 
  • Standard wheelchair (Approved Document M ) accessible toilets are not meeting the health and sanitation needs of a wide range of people, particularly those with:
    • Obesity
    • Muscle weakness / neurological impairments
    • Spinal injury
    • Stroke related difficulties 
    • Limb loss
    • Shortened limbs
    • Arthritis  / joint immobility
    • Dementia
    • Diabetes
    • Urinary Incontinence including urgency needs
    • Bowel Incontinence  
    • Learning Difficulties
    • Brain injury and balance disorders.

Safety concerns 

  • Some toilets have been found to be unsafe e.g. by not using non-slip flooring, no emergency cords / unreachable cords or not having the right type and placement of support rails. 
  • Hospitals are failing to ensure dignity, safety and well being of patients, staff and carers by offering unsuitable alternatives to standard toilets.
  • There are 155 acute NHS trusts plus 56 mental health trusts as of October 2015.  Many having multiple buildings across several locations.   Out of all these buildings, only 42 provide a basic Changing Places toilet with hoist, extra space and bench access.
  • NHS staff, for the safety of themselves and patients, can not assist by lifting people from wheelchair to toilet or from a seated to standing position. Where Changing Places are not provided or other suitable equipment such as adjustable height toilets, patients must take a family member to do manual lifting/assisting. This has caused long term back pain for many carers and is painful and dangerous for those being lifted.

Poor signposting

  • NHS staff are not familiar with the needs of patients regarding sanitation which results in poor signposting to toilets / inability to locate a toilet and unsuitable ‘alternatives’ being offered.
  • Not all toilets are shown on hospital maps/signs – and the facilities in each are variable, resulting in difficulty locating a suitable toilet.
  • Very few NHS websites detail information about where toilets are located and the facilities in each – making planning for an appointment difficult.
  • Toilet signs are often difficult to understant, see or follow.

General Health and Wellbeing 

  • Women are worst affected due to the need to be seated on the toilet, menstrual hygiene needs, increased risk of urinary infections and being more likely to have bladder problems such as urgency.
  • Patients say they would rather miss appointments because of fear of not having toilet access.
  • Families are prevented from visiting their spouses/children or friends in hospital because they can’t access a suitable toilet.
  • Patients are choosing to stay at home rather than go to A&E where long waits and no usable toilets are normal.
  • Patients are having surgery to remove the need to sit on a toilet (ostomy or suprapubic catheters)  because of access reasons not because of a medical need.
  • A healthy adult empties their bladder every 2-3 hours, yet many disabled patients are avoiding food and liquids for several hours because they know they can not use toilets at hospitals and clinics.
  • Avoidance / withholding urination and defecation has caused kidney, bowel and bladder damage.
  • Patients are taking extra medication to prevent urination or defecation when outside their homes for several hours impacting work, leisure and attending health appointments/treatments.

Difficulties specific to wheelchair and Scooter users

  • Wheelchair and Scooter users can not get close enough to the toilet for safe transfer. (People with a wide gait, obesity, users of frames/walkers or crutches are also affected by this space restriction).
    • 82% of powered wheelchairs will not fit into the transfer space at the side of a toilet that meets current building regulations.
  • Out of 613 models of scooter and powered wheelchairs – only 140 can turn around in the turning circle recommended in the current building regulations.
  • Severely disabled patients are spending several hours in soiled pads whilst they attend hospital appointments because of no hoist or changing bench facilities.

 

The NHS, by its very nature, will serve a higher percentage of people who need very specific facilities to use the toilet. Therefore, adapted toilets need to be of a higher quality to maximise independent toilet use and maintain a high standard of dignity, safety and hygiene compared to other ‘away from home’ facilities.

Due the nature of a persons’s impairment, illness, injury or medical condition, they may:

  • need the toilet more urgently
  • spend longer on the toilet (and getting on and off the toilet). 30 – 40 minutes is an average time.
  • go more frequently
  • require furniture/equipment to aid removal of clothes e.g. bench/chair
  • need toilet provision beyond what is required within building regulations e.g. extra space, access to bidet facilities/washrooms, access to a hoist and changing bench, access to a height adjustable toilet or other equipment.

To substitute a dedicated room (that non-disabled people are provided with) which has a flushing toilet, sink, waste bins, toilet paper, privacy (locked door/single person use) and space for any of the following (which are common practice alternatives) is not appropriate and probably unlawful.

  • offering no support or equipment – no usable toilet.
  • offer of a commode, spare bed / cubicle (often with a wait) alternative for people who could use a toilet room if one was provided.
  • suggesting patients pre-arrange hoist and nursing support (where space exists to safely use these as a hoist can not be used in a standard wheelchair accessible toilet space). Few people know exactly when they will need the toilet to plan days in advance.

Many alternatives cause pain, embarrassment, and mental distress. Solutions exist because people are able to use the toilet in their own homes – so why not in hospitals and clinics?

The future of public accessible toilets

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Further improvements are needed if we really want to make ‘away from home’ toilets truly usable for all disabled people. 

The best we have in the UK are those in new buildings which have followed guidance (Approved Document M) on meeting building regulations for access/features etc.

Most places provide single room, wheelchair accessible toilets to the UK wide specified design. A small percentage also provide Changing Places toilets (which take usability a step further by providing a high/low adjustable changing bench, hoist, toilet, sink and larger space). Changing Places are encouraged but not required in buildings. 

However, I feel we need to aim higher – because even these toilets aren’t always usable by a large number of people. It’s not just a case of whether someone can urinate or deficate – it’s about comfort for different body shapes, it’s about safety, dignity and hygiene. All these support people’s physical and mental health.

What might the future look like?

Changes in the law and building regulations.

  • Improved British Standards which would feed into
  • improved design within building regulations, for new buildings (e.g. more space)

Most importantly:

  • New laws on sanitation and equality for public toilets (both around access for disabled people and access for many other users).
  • Laws that make buildings older than 2004 upgrade their toilet facilities to the current specifications to meet duties under the Equality Act (2010) around disability.

*Currently buildings only have to provide disabled access to the level that was specified in the building regulation at the time of the build. Therefore, older buildings will not have the same level of access required today or may have no access at all.

Clear signage

There are so many different symbols, signs and words – which can be confusing for people looking for a toilet. A clear system of symbols would be helpful.

Usage

Promote the proper use of accessible toilets – many people need the facilities but don’t go in because of the words ‘disabled toilet’ or a picture of a person with specific, visual, impairment (e.g. wheelchair symbol/person with a stick). We need more public awareness that toilet like these are for anyone who needs the more specialised facilities inside.

Clearly stating that baby changing should be in an accessible parent/child location would make them more easily available to those with urgency needs.

Use of technology / equipment provision to open up accessibility to more people

Significantly high numbers of people need more than just a standard toilet, shelf and sink to meet their hygiene/toilet needs.

  1. Automatic washing and drying toilets

There are hundreds of thousands of people that are unable to clean themselves easily, or where it causes them great pain or puts them at risk of falls.

  • People with upper body limb loss
  • People with muscle weakness or paralysis
  • People with back problems who can not bend or twist.
  • People with severe arthritis 
  • People with obesity
  • People with dexterity/grip difficulties
  • People with balance and coordination difficulties.
  • People with bladder/bowel disorders/ incontinence
  • People with shortened arms
  • Disabled women particularly during menstruation.

2. Toilets which can be adjusted in height

These are essential for wheelchair users where modern chairs come in a range of heights (and people generally need to be at the same height to manually transfer from chair to toilet etc). Also, people with muscle weakness, neurological impairments or those who have difficulty moving their joints may not be able to stand up from the toilet unless it can be raised up to a height which suits them.

Variable height toilets also suit many lower limb amputees and people with short legs. Adjustability is key to prevent falls and enable people to sit/stand safely and more easily.

3. Sinks which can be adjusted in height

These facilities are only ‘desirable’ and not necessary within current guidance.

Safety

Toilets do not always have none-slip floors or alarm cords. Shouldn’t these be standard in every accessible/adapted toilet?

Space

Did you know that 82% of powered wheelchairs for sale will not fit into the transfer space inside an ‘accessible’ toilet and their is not enough room for assistance (or ambulance staff to get in to help if you fall)?

Increased number of toilets

Large venues like a shopping centre or stadium may have several visitors who need highly adapted toilets – providing one Changing Places is not enough.

What about the cost?

When someone pays for a new building – an office block, hospital, cinema/shopping mall, airport, train station … there is never a question of ‘do we need to put any toilets in the building – because we might not be able to afford it’. It is a ‘given’ that for public health, toilets must be provided. So if a place is going to provide toilets – they need to be usable by everyone (or they are as good as no provision). 

Of course, accessible toilets may have additional costs to ensure the space, technology, maintenance, security etc of the above. Those with an adult changing bench and shower need even more space.

Well, how much do you value disabled people as part of your community or workforce? How much do you want their custom (and their friends/carers/family etc)? How do you put a price on doing the right thing and enabling people to leave their homes and participate in life? What about complying with the Equality Act regarding Disability Discrimination?

Let’s be blunt – how much money are you making in your business – because most of the technology and space adaptations could be done for around £10,000 – £15,000 for the full works and is very affordable.

In my own home I have space, a ceiling hoist and a height adjustable toilet that also washes and dries – for around £5000. 

 

 

 

 

 

 

Novamed’s unique bed hygiene / toilet system

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Novamed_Europe_-_Better_SolutionsNovamed Europe are our guest bloggers this week with their innovative hygiene / toilet solution – Solaticare .

For full information and a brochure visit: http://novamedeurope.com/products

or you can chat with them, about their product directly or over on our Toilet Talk   Face Book group.

Solaticare

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Solaticare is an exciting new solution for those who are unable to access toileting facilities independently, once in bed.

It promotes dignity by allowing the user an independent solution to the need to eliminate, although a carer may also assist in the process.

There are two options – an automatic version located in the workings of an electric bed, and a community version, which uses a specially adapted mattress placed on a standard bed, with the help of a carer.

How you use it

To use the hospital bed model, the user needs to be lying supine, without pants, sheets may remain in situ. Using the remote control, the process is initiated with the press of one button. The mattress infill moves down and away, the Solaticare suction head then rises through the mattress to its working position, in very close contact with the body. When the user urinates and/or defecates into the suction head, the sensors within the suction head will remove the waste into a hermetically sealed unit next to the bed, once this has finished, rinsing with warm water follows, and the process finishes with warm air to dry the skin. The in-built catalytic deodorizer neutralizes any unpleasant odours. Then the suction head returns to its original location, and the mattress infill returns to give a comfortable feel to the bed.

The community model requires the help of a carer to positon the suction head with its hoses in a specially designed mattress cut-out, prior to use, and then it needs removing at the end of the process. There are infill pieces to restore the mattress integrity.

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Hospital bed model

The extraction unit is located by the bed stores the clean water and waste, emptying/refilling is needed usually just once a day. The process can also be controlled from the control panel on the extraction unit. This also includes controls to personalise settings, as times and temperature can be altered to suit personal preference. There is also a voice prompt option which tells which process is in function. It also comes with an optional shower hose which helps patient shower whilst in bed.

What do you think?

Disabled people made to cross their legs and choose between the toilet or eating.

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This week is nutrition and hydration week (nutritionandhydrationweek.co.uk). Its a global movement to reinforce ideas about the importance of good nutrition and hydration in health and social care settings.  Lack of usable toilets in health service venues (e.g. no toilets for hoist users in the majority of hospitals and clinics etc), people’s homes and communities is having serious health consequences. We highlight these in the article. 


Care and assistance at home

Back in the 90’s I was starved after an operation – simply because the nurses didn’t have time to feed me. I am unable to move my arms to feed myself and couldn’t even reach a drink… so at home, you would think people would have easy access to food and drink – and of course the toilet afterwards? 

The indignity of poor social care at home – starving and dehydrated, then left to wet yourself.

The reality is that disabled people (including older people of course) are forced into terrible situations and decisions with regards to eating, drinking and using the toilet.

1) Poor equipment provision resulting in unnecessary surgery

A few years ago someone who couldn’t move their limbs, needed 24 hour home care and could only eat and drink sitting upright. However, because the NHS Wheelchair Service failed to provide a chair that was suitable, they couldn’t sit up properly – and had to be fed/hydrated by a feeding tube.  I find this shocking.  Lack of funding and specialist skills to provided posture related equipment like seating systems can lead to disabled people having limited control over IF they eat and drink orally.

2) Lack of timely equipment and ‘cost’ is forcing people to use incontinence pads.

Secondly, if people don’t have the right equipment to use the toilet or a commode – at a time which they need it, they can be forced to wet themselves if left for long periods.   

Several families I was involved with when I worked in Adult Services were trying to adjust to a family member leaving hospital and returning home with reduced mobility. Some were ‘bed blocking’ because toilet equipment not being available. In one case, because a commode couldn’t be provided for the day they left, they were told to go home and use continence products.  It is disgusting that, lack of equipment can force people to sit all day and night on continence pads. It was deemed cheaper than ‘home care’ to help the person use the toilet and that is one of the reasons they gave.  This is both undignified and stressful  – and can lead to other problems, increased clothes washing and infections waiting for someone to change pads.

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3) Lack of home care forcing people to choose between eating / drinking or using the loo.

Many disabled people only get allocated a few hours of home care at critical times such as getting up, going to bed and using the loo once or twice inbetween. I experienced that for many years. The result is that you become frightened of wetting yourself or not being ready to go when the carer arrives – so you don’t drink (and many damage their kidneys) You definitely stay off any spicy foods which might require a sudden trip to the loo! It’s not a very nice way to live and can damage your health. Social services just reply with ‘use incontinence pads’ or ‘get a catheter’ – they have said that to me personally and told me to tell that to others.

4) Short, 15 minute home care visits – choose between having help to eat OR using the loo (and quickly at that).

There is nothing humane about social care allowing 15 minute home care visits. To find out more about the campaign to end this visit  http://www.leonardcheshire.org/campaign-us/take-action/make-care-fair#.Uyc1wXnO90h

5) Lastly, lack of large, usable, accessible toilet facilities for the disabled and older public to use, can lead to poor nutrition and hydration. This then causes serious medical problems.

So many ‘accessible’ toilets are simply not accessible. E.g. an accessible toilet inside the Ladies WC facilities is useless if you need the assistance of a male carer/assistant. A wheelchair accessible toilet that is only big enough for manual chair users is no use to a powered chair user. An accessible toilet without a hoist or changing bench, if you need one of these, is equally of no use. A toilet which isn’t height adjustable will block your use if you can’t stand up from a sitting position (but can walk).  

I’m not talking about ‘struggling’, I’m talking about not being able to use the toilet at all. 

The only option is again, not to drink, watch what you eat or stay at home. Even people who don’t use wheelchairs might not have the right facilities they need in an ‘accessible’ toilet or find it abused, dirty, used for drugs or a range of other purposes (other than a toilet!). 

Women are usually more severely effected because they physically need to sit on the toilet and can’t use a bottle.