Written submission from World of Accessible Toilets Project (DBE0036)

Capacity: Volunteer Project Manager of ‘World of Accessible Toilets’, independent advocate for accessible sanitation provision for disabled people of all ages and across all impairment types.

Website: https://toiletaccess.wordpress.com/about/

Executive summary

Usable toilets are needed.

1. Disabled people, of all ages and across all impairment types and severity, require toilet facilities they can use to enable disabled people to maintain their health, safety and dignity.
2. Toilets are required across all environments including the home, health care facilities (e.g. hospitals, GP clinic, therapy clinics), workplaces, educational facilities, transport hubs, towns, leisure/tourist venues and places of cultural or spiritual significance.
3. Existing toilets labelled/designed as ‘accessible’  are not meeting people’s needs are often unusable. This is frequently reported as the biggest barrier and source of stress in daily life. It also has a severe impact on disabled people’s mental and physical health, work, education, family life and day-to-day independence.
4. Existing legislation and guidance (Equality Act 2010, Approved Document M [Sanitation] and British Standard 8300 (2009) are not ensuring provision of useable toilets for disabled people and require urgent change.
5. A usable toilet is one which is easily found, readily available, safe to use and does not cause individuals (or their assistants/carers) pain, ill health or injury. Very few meet this criteria. 
6. Existing (Document M) unisex wheelchair accessible toilets are not big enough for wheelchair and mobility aid users.  82% of powered wheelchairs and many popular manual chairs will not fit next to the pan in a ‘Doc M’ toilet. (See diagram 1).

7. Older buildings (prior to Document M guidelines) frequently have no usable toilets.
8. Current Document M standards are frequently being ignored in the majority of new and modified buildings which should be meeting the criteria. Most have no ‘ostomy’ shelf and many have the wrong height toilet, incorrectly positioned or missing support rails, broken emergency cords, all white colour schemes and items out of reach such as soap and toilet tissue for example.
9. Lack of awareness or maintenance (e.g. emergency cords tied up, broken or missing support rails, clutter in transfer spaces, inaccessible signage) makes many toilet spaces unsafe or unusable.
10. Changing Places and Space to Change toilets (those with wider spaces, an adult changing/undressing bench, hoist and often shower facilities) are the only way to use the toilet for hundreds of thousands of people who can not stand (or transfer from wheelchair to toilet using their arms). However, these are only ‘desirable’ under Document M for larger buildings. There are less than 900 of these toilets in the UK, severely restricting the lives of people who need these facilities.
11. Two out of three acute NHS hospitals do not provide Changing Places facilities for patients, visitors and staff who can’t use a standard Doc M toilet. This ensures inequality with regard to accessing healthcare. 
12. The British Standard for Changing Places toilets does not provide for people who are able to walk, but unable to go from a seated to standing position or reach the toilet seat. This impacts many people with restricted growth, coordination problems, lower limb weakness and stiffness (particularly affecting older people).  Individuals in this instance require an adjustable height/electronic toilet riser and this equipment needs urgent inclusion into the standard.

Without access to a toilet, people are unable to leave their homes for long periods, if at all, resulting in severe isolation. People miss health appointments, family days out, job interviews and other work opportunities.  The alternatives people are forced to do are undignified, damaging to physical and mental health, unhygienic and unsafe.

11.               Alternatives have included:

•      being afraid to leave their home - not going out at all.

•      taking medication to prevent urination and defecation,

•      holding onto urine for several hours causing kidney damage,

•      wearing continence pads when outside the house despite being continent,

•      avoiding food and drink for several hours on a daily basis,

•      having bladder and bowel surgery to remove the need to use the toilet - simply because it is so difficult finding a usable toilet.

•      defecating into their hands in a standing position due to no equipment to help them stand up from a sitting position.

•      family being expected to manually lift people out of wheelchairs and carry them to the toilet or lay them on the toilet floor to have a continence pad changed or clothing removed. This causes injury and mental distress to both the disabled person and carer which often requires medical treatment eg for long term back pain.

1. About “World of Accessible Toilets’

One of the biggest restrictions in daily life and source of mental distress and ill health, for disabled people and carers, focuses around the toilet.

The aim of this project is to provide helpful/useful information through:

•         Encouraging disabled people to share their experiences through being Guest Bloggers or contributors to our publications.

•         Reduce the stigma in making toilet needs known to others.

•         Information provision in forums and across social media.

•         Supporting campaigns and consultations across the UK

•         Providing news and reviews of equipment, Apps and accessible toilet rooms.

•         Research for publications around the usability of toilets outside the home.

•         Recognising the unmet toilet needs, outside the home, of people with impairments that don’t always affect mobility e.g. people with progressive impairments, bladder and bowel disease, autism, mental health illness and dementia.

2. What project contributors tells us.

We would like to share, through our volunteer’s experiences, how Part M of the Building Regulations, Sanitation Provision, does not meet the current needs of disabled people outside the home.

3. People who are particularly affected are:

•      Millions of people with a hearing and/or visual impairment

•      6.5 million people with a bowel problems 

•      2 million with sight loss

•      4/100 adults who live with urinary incontinence 

•      1.5 million adults and children with a learning disability

•      1.3 million children in England with special needs including those with autism and multiple sensory impairments.

•      1.2 million people living with stroke

•      70, 000 people living with muscular dystrophy

•      62,000 amputees

•      30,000 adults and children with cerebral palsy

•      13,000 people with acquired brain injuries

•      8,500 people with multiple sclerosis

•      8,000 people with spina bifida

•      6,000 people with restricted growth

•      500 people with motor neurone disease

•      People with obesity

•      Older people with decreased mobility, dementia, reduced strength to stand and sit independently of assistance.

1. Space

1.1.               Diagram 1.  This is the size of a current, Approved Document M, wheelchair accessible, unisex, toilet. Inside we have shown the average size of a powered and manual chair excluding the space required for a person’s knees, arms, feet or equipment overhang (RICA, 2016).

1.2.               This space becomes smaller when you add a toilet, support rails, sink, 2 waste bins, sanitary bin and ‘ostomy’ shelves. It becomes a place of anxiety, struggle, danger, pain and frustration.

1.3.               82 % of powered wheelchairs on the market (including most popular models) will not fit into the allocated transfer space in a document M toilet. Data extracted from (RICA, 2016).

1.4.               A UK Study (Hitchcock et al, 2005) and Australian Study (Caple, 2015) show that adult wheelchairs are getting longer and (in the Australian study) wider for the majority of users. The rise in obesity and increased independence of severely disabled people is also likely to increase the future size of powered wheelchairs and mobility equipment.

1.5.                 The types of wheelchairs, and accessories utilised, have changed a lot over the past ten years, since Doc M was written. Chairs now come in many heights, lengths, widths and styles to suit particular activities or terrains e.g a wheelchair that is used to travel down a rugged forest path will be vastly different from one used mainly in an office or around the home, or one designed for a particular sport. Toilets in specific locations, e.g in a park or sports centre, do not reflect these needs.

1.6.                 Many powered chairs have special postural seating or have recline, tilt or rise features which change their dimensions. There are also many attendent propelled chair users, cane and walker users who can not safely manoeuvre in the current space.

1.7.               Based on our findings and the experiences of those who use wheelchairs, the existing Doc M dimensions for transfer and turning space are no longer suitable. A space of 1000 mm to the side of the toilet (as opposed to the current 700mm) is required to make a toilet usable. 

1.8.               A further improvement would be an overall increase in the floor space of all ‘wheelchair accessible’ toilets to 3 x 2.5m.  This would allow an achievable and usable standard which would also be big enough for an adult hoist and bench. These are known as Space to Change toilets.

1.9.                 It would follow that in large public buildings (eg over 280 square metres which is the current defined size of a ‘large’ retailer), or across large sites there should be a requirement within Doc M to provide a Changing Places (as opposed to them being desirable) with height adjustable toilet and automated washing / drying (both essential for hygiene and infection control yet not currently part of the British Standard for Changing Places).

2. Diagram 2 - Toilet size comparison
   

3. Toilets facilities in older buildings.

3.1.               A building only needs to meet the building regulation requirements which were valid at the time the toilet was built. Older buildings continue to have limited or no adaptions/access.

3.2.               A person will not be able to be fully included in society if the only toilets they can use are in ‘new or future builds’.

3.3.               Currently toilet spaces larger than those described in Doc M (Changing Places) are in addition to Doc M toilets. This is because wheelchair users need a sink next to the toilet which is not possible in a Changing Places toilet. Businesses may not have the space for two toilets.

3.4.               However, it is possible to both have a sink next to the toilet, and room for a bench and hoist (if required) within a Space to Change toilet. We would like the Committee to request amendments to Document M to make Space to Change sizes the new standard for wheelchair accessible toilets.  This would meet the needs of many more people, using just one space. It would also make it easier for older buildings to meet the needs of their staff and customers/visitors where space is limited.

3.5.               We would like the Committee to request Government to consider amending the Equality Act to state that refusing to provide toilet facilities for disabled people across all impairments/ages would automatically be deemed unlawful in the case of large buildings/venues.

3.6.               People aged under 2 yrs have their toilet and hygiene needs met via nappy changing / spacious parent rooms. People aged over 2 are denied changing facilities resulting in age discrimination and inequality.

3.7.               We would like the Committee to request Government to specifically including the Right to Sanitation and use of a flushing toilet, by disabled people, in any future Bill of Rights or amendments to the Equality Act (Discrimination) 2010, supported by new guidance from Doc M.

4. Hospital facilities and impact on health.

4.1.               It should be mandatory for all acute NHS hospitals to have at least 1 Changing Places toilet for patients, staff, visitors and volunteers.

4.2.                 Only 5% of registered Changing Places toilets were located in NHS hospitals or clinics as of January 2016 (Two out of three acute hospitals have no Changing Places toilet or equivalent).

4.3.               Quotes from NHS patients: 

“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.”

[Anonymous, Medway, Kent]

“My husband has been in hospital for 6 months and I am so restricted to visit him due to my care needs ie a hoist in wc’s."

[Anonymous, Midlands]

“ My husband takes my shoes and socks off so my feet don’t slip under his, then he lifts and drags me out of my chair and to the toilet.  It’s very unpleasant touching a toilet floor that’s got fluids on it. We often have to wipe the floor and my feet after.

I can’t even explain how difficult it is to wipe but it resembles a game of Twister with my husband holding me with one hand and using the other to hold my hand down the toilet as I have no balance and limited dexterity in my hands. At home I have a hoist and toilet which washes and drys me. I have my dignity and I feel safe and clean.

I am told by two of my hospitals ‘we have no funds or space for accessible toilets’ at the same time as I’m seeing new departments being built or altered. Toilets just aren’t considered essential.

In one hospital toilet, at Guy’s London, I had to lean over a sanitary waste bin because there was no grab rail. I was so frightened of falling I couldn’t relax to go properly. I made a formal complaint as I couldn’t find a safe and usable toilet.

There is nothing ‘standard’ about standard accessible toilets.

I have to be dragged to the toilet at all the hospitals I attend because they have no hoists or space - and my husband has to take time off work sometimes simply to ensure I can use the toilet. My local hospital told me they have ‘Doc M toilets’ and therefore have provided accessible toilets.  There is a lot of ignorance.

I use a ventilator and a small adult powered wheelchair.  It’s vital I attend my respiratory clinic at the Royal Brompton hospital.  In this new building,  I had to go in backwards as there was little room to turn.  The emergency cord was tied up and the position of my chair, next to the toilet, was so tight it stopped the grab rail from coming down. It was also missing a support rail on the other side and the radiator protruded into the turning space which you could tell had been hit a number of times by all the scrape marks. I’m shocked considering the number of people with severe mobility impairments who attend these clinics“

[Louise Watch, Kent]

“On visiting the new 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.

[Dawn Kelleher, Cardiff]

“We spend 90% of our life in hospital at outpatient appointments because my son is severely disabled with cerebral palsy, severe dystonia and epilepsy. We have to change him on the dirty floor [of the accessible toilet]. OTs and Physios know the risk to the care giver’s back and all NHS staff should know about the risk of infection control.”

[Samantha Buck ,West Sussex]

4.4.               Impact on health

4.4.1.         Disabled women are choosing to have surgery because they can’t find toilets with adjustable height or find the spaces too small. [Anonymous] has a type of Muscular Dystrophy. She told the project how she had found a doctor who was willing to let her have surgery for a suprapubic catheter. Despite the pain and infections, she says it is the only way to leave the house because there are no toilets she can use or assistance to use them.

4.4.2.         Another lady explained how she wasn’t able to stand up from the toilet if she sat down [too low]. The only option was to remain standing, lay toilet paper in her knickers, more across her fingers and defecate into her hands.

4.4.3.         Obesity can bring about the need for bigger toilet spaces and provision of automatic washing and drying toilets can prevent poor hygiene and infection. “ One of the worse, if not the worst thing about being this obese is dealing with toilet hygiene.... when outside the house I go without wiping.” [Anonymous]

4.4.4.         Most wheelchairs users tell us they frequently withhold food and drink for several hours before going out, for fear of needing to go. Long term this can cause people to have infections, dehydration, constipation and kidney problems amongst other health issues.

4.4.5.           Women are particularly prone to urinary and vaginal infections, pressure sores, pain and discomfort due to having to remain in soiled pads for several hours (urine, faeces or menstrual blood).

4.5.               Stigma and mental distress

4.5.1.           Many people are afraid to speak out about their toilet needs because they find it embarrassing or shameful. Stigma prevails and people continue to struggle, often in the most inhumane way.

4.5.2.           Complaints are rare and awareness about the true toilet and hygiene needs of people remains low.

4.5.3.         People report feeling isolated and depressed and fearful to go out in case they get ‘caught short’.

5. Toilets at home

5.1.               Toilet spaces in properties designed to be homes for life - are not big enough for the needs of wheelchair users who need hoists or those who need equipment to help them get up from / use the toilet. People are likely to be forced into nursing/home care residences simply because of lack of toilet access.

October 2016

References

Caple D, Morris N et al (2014).  Research on spatial dimensions for occupied manual and powered wheelchairs project, final report. December 2014, David Caple & Associates Pty Ltd. Victoria.

Hitchcock D, M Hussey, S Burchill and M Galley (2006) A Survey of Occupied Wheelchairs and Scooters Conducted in 2005 CEDS for The Mobility and Inclusion Unit, Department for Transport, London.

RICA (Research Institute for Consumer Affairs) database of powered wheelchairs and scooters 2016.

Supplemental information detailing the experiences of disabled people are available in the following project publications:

Details of our 45 Page report on Accessible Toilet Provision in the NHS (2016)

[https://toiletaccess.wordpress.com/2016/01/21/new-report-toilet-access-within-the-nhs/]

Download pdf version Guide to Accessible Toilet Standards and Equality Act requirements

Download pdf version What makes a toilet accessible

Download pdf version Going beyond the standards_