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?

Equality of toilet provision – The Equality Act 2010

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Whilst not a legal guide, information is provided here, and in our guides, to help you assess if your toilet provision is meeting the required standards and your Equality Act duties. Only a court can decide if you have failed to prevent or caused disability discrimination.  Similarly, toilets which do not comply with health and safety will be subject to further actions and investigation from relevant safety bodies.
Guide to Accessible Toilet Standards and Equality Act Requirements

The Equality Act 2010

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In the UK, the Equality Act protects the rights of all disabled people, as individuals – which includes sanitary facilities that are provided.

Facilities being offered must provide equal access to toilets for disabled customers / visitors and employees, to the same standard as non-disabled people.  This means meeting their Equality Act 2010 obligations. Public bodies such as councils, schools and hospitals have additional duties under human rights law and the Equality Act.

The Equality Act does not recognise ‘minimum standards’. An individual disabled person or carer could argue that there has been no ‘reasonable adjustments’, as required by law, as it relates to them.  Also, what is ‘reasonable’ changes over time and adjustment is an ongoing obligation.

Being Reasonable

A business should pay close attention to how ‘reasonable’ is judged in courts and described in the Equality Act. Many businesses underestimate the extent of their duty to make adjustments and do what is reasonable in all of the circumstances.  Citing ‘too expensive’ or ‘disruptive’ without evidence of a thorough assessment and providing strong reasoning would be unwise.

Making adjustments

Businesses must take positive steps to remove barriers to disabled people and make reasonable adjustments. They must think ahead and plan to remove barriers – not wait until a person has had difficulties or feels they have been discriminated against.

Listen to the experiences of disabled people and if a problem has occurred take reasonable action to prevent discrimination from re-occurring in a timely manner – the ongoing obligations of the Act.

If someone doesn’t cooperate with their duty to make adjustments, the Equality Act says it’s unlawful discrimination.

The duty to make reasonable adjustment, imposed by the Equality Act 2010, means that provisions beyond that in Approved Document M [AD M] of the building regulations are likely to be required to anticipate the needs of a range of disabled people so they have equal toilet access.

You may have to upgrade your toilets now rather then wait for a ‘refit’ or new toilet block to be built.

Reasonable adjustments may include:

  • Gaining a thorough understanding of the needs of a range of different people and understanding particular needs e.g. asking “what do we need to do specifically for people with profound and multiple learning difficulties” as opposed to ‘what facilities do disabled people need’ or ‘what is the minimum standard we have to meet’.
  • Auditing toilet facilities thoroughly – not just against minimum standards.
  • Consulting with disabled staff, customers or other organisations to ensure facilities meet a wide range of people with different hygiene needs.
  • Making physical adjustments / building new toilets.
  • Providing Changing Places toilets or hiring a mobile unit
  • Publishing access statements about toilet facilities.
  • Making people aware of the type of facilities you have (e.g. widths of doors, heights of toilets, layout of grab rails, type of lighting etc).

What do the building regulations say?

Although the guidance in this Approved Document, if followed, tends to demonstrate compliance with Part M of the Building Regulations, this does not necessarily equate to compliance with the obligations and duties set out in the EA [Equality Act].

This is because service providers and employers are required by the EA to make reasonable adjustment to any physical feature which might put a disabled person at a substantial disadvantage compared to a non-disabled person.

In some instances this will include designing features or making reasonable adjustments to features which are outside the scope of Approved Document M. It remains for the persons undertaking building works to consider if further provision, beyond that described in Approved Document M, is appropriate.

[http://www.planningportal.gov.uk/uploads/br/approved-documents-amends-list_2013.pdf]

How do I upgrade my existing toilets?

cp_doorTo provide good facilities the following types of venues (but not inclusively) should be looking at 1 or more Changing Place toilets alongside provision of toilets that meet the latest building regulations (October 2015) – these have diagrams of exactly how to fit out a toilet, what size it should be etc for maximum accessibility.

  • major transport terminals or interchanges such as airports, large railway and bus stations
  • motorway service stations
  • sport and leisure facilities, including entertainment arenas, stadiums, large hotels, large theatres and multiplex cinemas
  • cultural centres such as museums, concert halls and art galleries
  • shopping centres, large retail developments and Shopmobility centres
  • key public buildings within town centres such as town halls, civic centres and principal public libraries
  • educational establishments, including universities
  • health facilities such as hospitals, health clinics etc.
  • portable facility at outdoor events

There is also a British Standard for accessibility BS8300:2009.

Guides on our link/resources page will also help you.

Full details about Changing Places and are available from:

http://www.pamis.org.uk/cms/files/publications/Changing%20Places%20a%20Practical%20Guide.pdf

Smaller venues should look at recent building regulations below and also look at whether other facilities could be offered e.g. a hoist or a changing bench for disabled children if they can not provide a Changing Place.

http://www.planningportal.gov.uk/buildingregulations/approveddocuments/partm/adm/
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If toilet facilities are not meeting the needs of individual disabled people, organisations must change things to make sure there is suitable toilet provision. Not having useable toilet facilities would be a major barrier to using / visiting , or working for an organisation.

Having no usable toilet facilities is also highly likely to prevent substantial income generation from disabled people and their families because they would be unable to visit, or visit for the same length of time as non-disabled people might.

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.

Sanitation and the purple pound

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If disabled visitors can pee and poo, the purple pound will come to you.

It’s that simple.


Sanitation is possibly the most overlooked provision that can bring profits down and decrease the number of visitors you will attract.

When asked what is the biggest factor that would prevent or deter you from visiting an attraction – disabled people generally say it’s the toilet facilities that influence their decision the most.

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A toilet that fails disabled people

Let’s face it – would you visit somewhere for the day that had no toilets?

We need to remember that an ‘accessible toilet’ that is not usable (or doesn’t have the full compliment of access features for people with different needs) can be regarded as absent.

Your toilet is as good as absent if:

  • it is poorly signposted. If you can’t find it when you need to – it might as well not be there.
  • locked (aside NKS keys)
  • has the wrong fixtures and fittings
  • poorly maintained (dangerous, wrong flooring, poor illumination, wet etc)
  • cluttered or being used as storage space
  • Does not have the full range of access features needed by visitors – would you know what makes a toilet usable for all?

I have been to 14 places of interest in the past year (Museums, gardens, historical buildings, wildlife parks/zoos, heritage railways) for days out.  Being passionate about sanitation, I looked in every ‘accessible toilet’ on all but one site  – not a single one met the full access requirements as detailed in the current building regulations for a new toilet.

In other words, they all had elements which would have made them unusable for people with particular needs.

Only 2 had a hoist for people who can not raise themselves out of a wheelchair onto a toilet, and only 1 had an adult changing bench for those who need a pad change.

I have what is required by law.

This may be true in respect of building regulations – but the Equality Act 2010 requires equality of sanitation provision for disabled people. (See our free guides for information)

To fail to bring your facilities up to the most recent standards gives a strong message that disabled people and their friends and families are not welcome. You are not interested in supporting social inclusion and are not interested in taking your share of the purple pound.

What is the Purple Pound?

The purple pound is money that disabled people and those that come with them (e.g. family, friends etc) have to spend on tourism.

  • In 2013, 20% of all Tourism Day Visits in England included someone with a health condition/impairment. That’s a spend of £9.4 billion.
  • Over 500,000 people each year visit England from abroad, who also have a health condition or impairment – worth £341 million.

In total – disabled people and companions are spending £12.4 billion pounds a year within tourism.

Why would you not want some of this money?

The quality and standard of your toilet provision says a lot about you. Get it wrong and it’s going to cost you money and your reputation.

Written for World Tourism Day 2015:  http://wtd.unwto.org

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?

It’s finally arrived – the Aquarius Porta Bidet

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I’ve been waiting a few years now for this product – and had given up all hope – then today I noticed it had arrived and was ready to purchase ….. so here it is – the Aquarius Porta-Bidet.

Aquarius

Retailing for the VAT exempt price of £195 (free carry case if you order now worth £25) this might be just what you are looking for – (Pre-order price secured with a £50 deposit until March and free entry into a draw to win one for the deposit price).

I’m excited because the chances of finding a toilet that a) I can get on to and b) has a bidet feature, on holiday, is almost nil.  However, It’s the thing I love about coming back from holiday – oh how I miss my bidet!

So what has this to offer. Well, it’s battery operated which claims a powerful pushing wash nozzle and it gets the water from a reservoir container you place on the floor (so no plumbing or tampering needed).

Let’s look more carefully.

The_All_New_Aquarius_Porta_Bidet_-_Aquarius_Hygiene

This is a screen shot from their video on: http://www.aquariushygiene.com/2014/11/14/the-all-new-aquarius-porta-bidet/

I have a portable spray unit like this that fixes just under the lid – which I bought to make my own portable bidet. My unit came from South Korea and cost about £25 …. but pumping water through it was going to be the difficult part … so let’s see how Aquarius Hygiene do it. Interestingly (and somewhat annoying for me) they can bulk by I assume and offer this part as a replacement ‘spray arm’ for only £9.95.

The_All_New_Aquarius_Porta_Bidet_-_Aquarius_Hygiene

Again, I have taken a screen shot – you fill the unit with water and it has a built in pump and an on/off switch on a tethered handset (which has a hook if you want to hand it nearby). The nozzle retracts after use (and whilst I couldn’t find details on the nozzle spray unit they used – I assume it has a hygiene ‘rinse through’ to keep the nozzle clean?

The unit is a pleasing aqua green and white colour – no information on how big but here are further details:

  • It uses rechargeable batteries
  • 1.5 Litre capacity
  • Minimum of 50 wash cycles per charge
  • 4 wash cycles per reservoir
  • Under 2kg in weight.

The nozzle is not adjustable – so you get the spray wherever it lands (I know this will be problematic for me because of the way my pelvis ‘sits’ – so if you can’t sit right back on the loo or have pelvic deformity where you don’t sit ‘evenly’ you may just get a wet thigh instead. For me, some water is better than no water!

I’m pretty sure to be getting one – so I’ll give it a full review in the summer when I’m on holiday.

Until then…

What’s it like to have assistance to use the toilet?

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Guest Blogger Carl Tilson talks about toilet access and assistance.

carl tilsonCarl can be found on the web on his  Facebook page

This article is available for use by DMD Pathfinders  [http://www.dmdpathfinders.org.uk] – an organisation which promotes choice and control and quality of life for teenagers and adults with Duchenne Muscular Dystrophy (DMD) in the UK.

Carl tells us…

As if being in a wheelchair is not dignified enough not being able to find a suitable accessible toilet or shall we say bathroom when you feel desperate to go is most unpleasant and embarrassing not to say the least. A lot of places are not wheelchair accessible however the places that are and have been made accessible by having a ramp to enter the building don’t tend to consider making toilets accessible.  Do they think that being in a wheelchair means we don’t need to use the toilet? Funny how people consider one thing then completely forget the other very important thing connected to the first thing.

A convenient solution

I have found a solution due to the many times I’ve been somewhere with my carers and the venue has no accessible toilet, that solution is a latex sheave which is like a condom that goes on the penis that is attached to a leg bag under clothing. Sitting on the toilet is impossible and the places where it is accessible, they have accessible toilets but they don’t have hoists or toilet frames so if you are a woman it’s even harder to find an accessible toilet. Having a sheave what I like to call a ‘Convene’ short for convenience makes life trying to find a toilet much more convenient. All the carer has to do, to empty the convene via the leg bag is to flip the valve down and put it into a bottle, however the bottle I use is called a urine bag, its discreet and can also stretch like an elastic balloon. Once finished my carer will then take the bottle to the ordinary toilet to empty out its contents and clean the urine bag out while I wait outside the toilet.

The biggest overall issue is sitting on the toilet most people think everyone who uses a wheelchair has upper body strength which is not the case for many who use wheelchairs people tend to not consider people who have nerve and muscle tissue deficiencies not everyone has lost feeling in their legs or had spinal injuries.

 

New potential duty to provide public toilet in Wales

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New draft laws, for Wales, would make local authorities responsible for public toilet provision to improve public health – but how accessible will they be if this goes ahead?

The Welsh Government Health Minister acknowledged the impact that lack of toilet provision has on people’s lives. However,  if this law is passed, Wales perhaps needs to think about what accessible actually means – an inaccessible toilet is as good as no toilet.

 

AMs heard evidence that often public toilets were difficult to find or not open when needed, and that facilities did not meet their needs and were unclean and unsafe.

Health minister Mark Drakeford told the BBC’s Sunday Politics Wales: “We know that if people are not confident that they will have the facilities they need then it has a distorting effect on their lives.

“They stay at home when they would like to go out. They don’t take tablets that they need to take in order to be able to go out.

“And for older people, people with some mental health conditions, people with young families and children, the fact that they need to be confident that there are proper facilities that they can use if they want to be out in our society is a genuine public health issue.”

“In an age of austerity the answer simply cannot be find more money for it. what we have to do is be more imaginative.”

[Source and full article from BBC News Wales: http://www.bbc.co.uk/news/uk-wales-26788560

Dignity down the pan – does it have to be this way?

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It might be a quaint way to describe a lavatory but how I wish bathrooms weren’t the ‘smallest’ room in the house. You can hardly swing a cat in most of them and if you have restricted mobility, then what are you supposed to do….

Time to do some myth-busting and explore the nemesis for wheelchair users that is The Loo.

 

1. Wheelchair users don’t need to pee (or poop).

They probably have catheters or something and pee into a bag or wear incontinence pads? Do people really think that is what happens – and they don’t need to provide accessible toilets? I was once approached by a complete stranger and asked ‘do you use a catheter’. It is bizarre, rude and ignorant – but it happens.

Yes some people do but not everyone – most of us pee and poop the way nature intended and need to get to the loo. Even people with catheters and bags that hold the urine have to be emptied – so we all need a toilet.

2. Disabled people poses super powers to hold themselves for several hours at a time and don’t need a toilet.

Daniel Baker

My friend Daniel Baker at MCM Comic Con – so maybe people do have super powers?

I certainly don’t poses this power and I doubt anyone else does.

If I drink, inevitably I will need the loo at some point. If I drink tea then you’d better have either a toilet or a mop to hand – your choice.

Seriously though, I can’t visit anyone’s house without resorting to only having a sip of water before I go, and nothing until I get home. I can’t risk needing the non-existent loo so my favourite cup of tea has to go on hold.

I use a small adult power chair – but bathrooms in people’s houses are either upstairs or too small to get into (or close enough the loo to transfer).

You know those times when you just know you will be up and down to the loo all day – they are the worst days. I don’t know if I will be able to wait half an hour, an hour or three hours before having to dash home. You sure do feel those pot holes – in fact the number of potholes you bump over directly correlates with the urgency of need.

3. All public places have a disabled toilet, don’t they?

Where do I start with this one! Some don’t have any accessible toilets – going out usually involves using the internet or phoning places to ask for specific details. Often staff do not know what type of accessible toilet they have and provide the wrong information – or leaflets do not specify. Very annoying.

In England the law doesn’t say the public have to have access to a toilet – so councils are not obliged to provide them to anyone!! [Public Health Act 1936].  Generally though, there are good practice standards that should be incorporated into the design of buildings to include flushing toilet facilities that are accessible to disabled people.

The reality, however, is that not even my local or national hospitals meet these standards – never mind the pub down the road or the multi million pound cinema and bowling complex in town!

4. What types of toilets are there and what’s the problem with them?

Well, let us say someone has looked at the building regulations (known as Part M) and chosen to have an accessible toilet on site.  What could possibly go wrong!

Ignore regulations…

10155072_10201673897397303_1686122137207154089_nMy friend Carole found a great example from the New Inn in Durham – the door has no handle. The metal part is for a Radar Key. Some have a step up to them or  display the wheelchair symbol yet are not big enough for many modern day wheelchairs! Others use strong sprung hinges so you can’t open the door … the list goes on and on and the regulations might as well not exist.

Did you know there are 3 types of accessible toilets?

Yes – three! However – this doesn’t make them automatically comply with UK equality legislation or mean they are accessible to everyone.

Type 1 – Accessible to people who can walk.

The first is a slightly larger cubicle with some grab rails or a higher seat for example – these are for people with restricted mobility but who can walk a few steps – ambulant disabled people.

Some venues say they have a disabled toilet – but don’t say it’s only for those who can walk.  Some of these wrongly display the wheelchair symbol. This happened to me at work once and I had to cross my legs for 8 hours! The venue then went and built a new toilet block with two ‘wheelchair’ accessible toilets – but still these were not big enough for even a manual chair. Sometimes you just give up and I refused to go to that venue again. Not having toilets within reach can prevent disabled people from working – this is what happened to Boots Opticians when they failed to provide a nearby accessible toilet for a member of staff.

 

Type 2 – Accessible to some athletic wheelchair users who can perform acrobatics.

The second type displays the wheelchair symbol and is a toilet that should meet building regulations for wheelchair access.  The sticking point with these is that the recommended space is only big enough for the length of a compact /short length chair – and not everyone has one of those.

WC_dimensionsHere is a scaled picture of a wheelchair accessible toilet according to building regulations. The green rectangle is the footprint of my NHS power chair. Next to it is the recommended (same scale) turning area the regulations use for ‘enough space’. As you can see it’s based on a manual chair, it’s a tight fit and it doesn’t mean there is available floor space by the toilet where you actually need it!

 

Throw in the difficulty caused by the addition of a baby changing unit on the wall and baby nappy bin on the floor – no floor space or room at all to turn!

To deny someone appropriate toilet facilities is a huge black mark in the book of human dignity and rights.

 

My husband has to stand me up and then hold me to try and swing round and move me backwards between the gap of the sink and my chair, to sit on the loo! You have to be a circus performer to pull that one off without falling and banging into things. Not to mention trying to maneuver your clothes off …. that’s when you say ‘sod it’ and stay at home.

Type 3 – Accessible to all and includes an adult changing bench and hoist. They are known as Changing Places toilets.

These are few and far between – only 600 in the UK – if you need to change a pad without these facilities you might have to lay on the floor of a public toilet like this child has to do.

5. So what do you do then?

Stay at home, don’t visit family for long periods or spend lots of time finding out about the exact nature of the toilet facilities on offer – then decide whether to go or not.

Even more degrading for women.

Some men have the options of using a portable urine bottle – but women experience the most difficulty having to transfer to the loo every time and also deal with menstruation. Give yourself pins and needles so you can’t move your legs much, wear mittens and then try and change a pad or try asking your husband to help …. now try it in a cramped toilet on the first day of your period with the nauseating smell of baby poo lingering in the air. Not so nice is it?

Welcome to my world and hundreds of thousands of women like me – a part of our lives that goes unspoken about, unnoticed  – but it doesn’t have to be this way.

With proper facilities, assistance and good information, we can make informed choices and retain a level of dignity and hygiene that might otherwise be flushed down the pan.

Louise Watch, writing for Blogging Against Disablism Day 2014.  BADD2013

Blogging Against Disablism Day, May 1st 2014