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?

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?