Guest blog: Rising to the toilet challenge.

Standard

 

Fiona very kindly agreed to be our guest blogger this week. Find out about her experiences accessing the toilet inside her home, at work and when out and about.

We discussed lots of toilet challenges – which we’ll be popping in another blog post around April. 

What was your earlier method of using the toilet?

From a very early age my gran and mother was of the “hover” at public loos brigade. I now find myself 33 with MD, a muscle wasting disease, and no longer able to “hover” or stand up from sitting on a toilet.

Which kind of adaptations have worked well for you at home and work?

Everyone is different. But in general I need a loo that rises to either stand me up or line up with a chair.
12583972_218142658521301_335436409_n12584175_218142641854636_606909718_n

At home I have a purpose built wet room which includes a Riser (adjustable height)Lima Lift, Clos-o-Mat wash/dry WC. Riser Sink (adjustable height) so I can access sitting or standing dependent on task or energy that day.

I have an open level floor wheel-in shower with Body Dryer and multi positioned grab bars in shower and beside sink and WC.

I also have full length mirrors to suit me sitting or standing. My shower is mounted at a height suitable to operate from my wheelchair or standing.

12596416_218142648521302_1974794328_n

In my (original) upstairs bathroom (and workplace) I still use a Mount-way riser seat. For me this is great as space in my small bathroom is an issue, I can only access the WC and have different solutions for hand washing as my chair doesn’t fit in the room.  The Mount-way is great for me as I can still weight load but for some the angle of tilt is not suitable due to weak legs. The tiles are also a little more dangerous in a bathroom that is used for washing when the floor may become slippery.

It’s worth noting that their can be a problem with my Mount-way riser loo batteries running out. I’ve  been left well.. sitting duck on the potty comes to mind when there is simply no “up” left in me.

12575884_218142651854635_1200200393_n

All of the above along with my riser wheelchair are priceless to me as it gives me total independence and privacy when at home.

What about outside the house – that must be difficult?

Now in an ideal world I would have my home loo set up every time but sadly not.

So for many people like myself have to resort to withholding fluid. This is a gradual thing done over many years that you dont notice it happening. I am at the point when I can’t sit to stand unaided without grab bars, riser toilet/chairs or helpers.  So as well as being denied access to the WC, the restriction in toileting,  bars me from eating out, cinemas, visiting friends, key social activities everyone else takes for granted.  

I can’t eat or drink socially as I cannot independently toilet and it is worth noting that not every disabled person has access to family or paid carers.

How have you adapted to changes in your strength, do you worry about the future?

I have been evolving with my condition for forever.  I have always had the eye on what’s next to fix that. Well unfortunately the world wide WC problem has me stumped. There are various gadgets for ladies to pee standing and from chair and all are great inventions. However,  sadly I think the only viable step would be catherisiastion as balancing in unsuitable bathrooms is dangerous or even finding enough WCs –  and frankly this makes me both sad and angry that yet another function will be taken away from me before it is medically necessary. My bladder is fine I just can’t hold it for up to 8 hrs and eat and drink.

What else would you like readers to take from your experiences?

This is not luxury. We need clean safe loos and lots of them. We have a right to open the door without that intake of breath and worrying about ‘what have we got this time’. We have a right to have enough room for us and up to 2 carers to work. A right not to be fed or changed on the toilet floor. To be able to leave our homes without being catheterised before we are ready. Being catheterised should be my design or for medical reasons and not based on the lack of suitable WCs in the community. Please give us our dignity let us pee in peace.

Fiona, Glasgow, Scotland 


 

[Sub note: Whilst Changing Places offer a large space, adjustable height bench and a hoist, many people are not at ‘hoisting stage’ because they can still weight bear. To hoist requires the ability to carry a sling with you and be with someone trained to take it on and off.  Like Fiona says, not everyone has assistants/carers or family who can help them, with them at all times outside the house. When people can still stand (but not get from a sitting to standing position), it is a height adjustable toilet or toilet riser system that is needed, not just hoist facilities.

We feel height adjustable, wash/dry toilets should be standard in all Changing Places toilets.]

 

 

Guest Blog. It meant I could have a drink.

Standard

  

This month we are focusing on the needs of people who need help or equipment to stand up from the toilet.

Find out more about our topic and people who might experience difficulties in this post.

Our first guest blogger shares their enlightening story …

(Guest blogger has chosen to remain anonymous, South UK)

I live with a muscle wasting disease. It is progressive and over the years I have had to adjust to my declining physical state. I have come to terms with the loss of dignity and independence and I am accustomed to family, friends, carers and strangers assisting with the most intimate of tasks. The times I got stuck on toilets and had to be helped up by strangers of either sex was no fault of mine. This disease progresses as it will it seems; one day I could get off a regular water closet with a great struggle, the next I could not get off even with the knowledge that I was about to invite a stranger to rescue me from the most embarrassing of positions.

You would think that a hospital would have the facilities and knowledge to ensure that all people who use it could use the toilet. It is the most basic of needs! I have had surgeries when I would not be allowed to leave until I had used the toilet. Now, even with the help of carers, there is hardly any toilet in my local hospital that is accessible to me. I have had to resort to even more creative solutions when enduring any of my frequent hospital visits. There is no point wearing a diaper as there appears to be no toilet that has a hoist or a changing table. I try not to drink before most hospital visits but sometimes the appointment is for a scan and the instructions are to drink 2 litres of water before the procedure. 

For now, I can just about manage to pass urine into a bottle. I cannot sit on the toilets as even if I wanted to attempt a side transfer my carer could not fit into most toilets with me and my bulky wheelchair. Even when we do fit in a toilet the toilet is too low for a transfer and there isn’t enough space to park parallel to the toilet. So, whenever I need to go to hospital I use Imodium and Desmomelt when I want to avoid the toilet. Yes, it is drug abuse, but I consider it a pre-emptive strike so I do not have the indignity of needing the toilet and not being able to use it. 

More space to transfer helps. If there could be height adjustable toilets that would be great. 

I remember my excitement when I visited the Essex Coalition for Disabled People and saw a raised toilet seat in the toilet. It meant I could have a drink.

[Thank you to ‘anonymous’ for sharing this story for our project)

Unable to stand up from the toilet?

Standard

Our topic for this month looks at what people do if they can not stand up from a toilet (sitting to standing) – yet may be able to walk or get in and out of a modern powered wheelchair, unaided. How do people manage inside and outside their home?

We will be adding links below to our guest bloggers and hearing about this dilemma which affects hundreds of thousands of people in the UK.

Building Robots

robot

More to the point – what has it got to do with accessible toilets?

Well, we need to understand the complexity of normal body movement and posture – to learn about what can go wrong.

Only then can we see why so many people might not be able to use even the best of accessible toilets outside their home, such as Changing Places.

Human movement is amazing – when it works.

Because humans have a complex body to replicate, even the best robotic designers find it a major challenge to reproduce our abilities.

 

In a very simple form, humans need:

  • A solid framework to attach muscles to (skeleton of the right shape and material)
  • Muscles, tendons, connective tissues (allowing us to push, pull, bend, rotate etc)
  • Nerves and brain function to co-ordinate / activate muscles (for tone, balance etc)
  • Feedback and fine tuning network 
  • Fuel to ‘use up’ when performing the actions (nutrients, oxygen and a range of chemical exchanges to make electrical impulses for example).

Can you imagine how a problem with just one element of the above might prevent people form being able to remove clothing, sit on a toilet, clean themselves, stand up again etc.

Standing up from the toilet

From the muscles in your toes right through to the muscles in your head and neck (and all the electrical and chemical activity between your brain/spine/muscle) that’s a lot of things that need to be functioning well to go from a sitting to standing position.

So what type of impairments might someone have that could cause difficulty or an inability to stand up from a regular toilet?

The key problem areas are medical conditions which affect balance, muscle strength and co-ordination.

  1. Cancer (weakness, balance, thinking – varied effects on the body depending on severity/location)
  2. Stroke (balance and muscle weakness)
  3. Cerebral Palsy (affecting movement and co-ordination)
  4. Lower limb amputation(s) (balance, movement range)
  5. Spina Bifida (nerve damage with varying affects)
  6. Spinal Cord Injury (nerve damage with varying affects)
  7. Fibromyalgia (chronic pain condition)
  8. Osteoporosis (can cause limbs to twist, pain, joint movement problems)
  9. Chronic Fatigue conditions
  10. Chronic Arthritis and Rheumatoid Arthritis (range of movement, deformity, pain, balance)
  11. Multiple Sclerosis (can affect strength, balance, memory, thinking, vision)
  12. Neuromuscular Disease (hundreds of different types and sub-types causing muscle weakness  e.g. Muscular Dystrophy, Motor Neurone disease, Spinal Muscular Atrophy, Guillain-Barre Syndrome, Polymyositis)
  13. Weakness caused by old age
  14. Brain disorders
  15. Medications (medication to lower cholesterol can cause limb weakness for example)
  16. Parkinson disorders (stiffness, balance, movement, thinking, co-ordination, fatigue)
  17. Leg trauma (fractures, sprains, strains)
  18. Spinal degeneration, abscess or tumour

 

Solutions at home

riserSome people manage at home by have a toilet seat riser – making a standard toilet seat 4-5 inches higher. Riser frames and other types are also available to provide a fixed height.

All wheelchair accessible toilets in the UK must be able to take the addition of a raised toilet seat (but are almost never provided probably because if you have that level of impairment you’re unlikely to be able to fit one without help).

Many people still find these too low or it leaves them dangerously high with their legs dangling in the air, unable to touch the floor for balance whilst seated.  These people require the use of a toilet seat or toilet pan that can be electronically raised and lowered to suit their requirements.

Clos-o-Mat_-_Toilet_Lifters1.jpgClos-o-Mat_-_Toilet_Lifters2.jpg

Above, Aerolet vertical and tilt from Clos-o-Mat [Source: Clos-o-Mat.com]

Often people ‘drop down’ onto a lower toilet (and to be able to sit with feet on the floor for balance) then raise the toilet very high, so they can slide down onto their feet, to get off. Changing Places and ‘wheelchair accessible’ toilets do not provide a removable raised toilet seat nor height adjustable toilets as part of their standard of provision.

People who are unable to stand at all, or push up with their arms, will use a hoist to get to and from the toilet.

No solution outside the home

There are hundreds of thousands of people who can walk (or raise their wheelchairs up to help them stand) and don’t have full time carers or assistants with them, yet can not stand up unaided from the toilet.

Clinics might provide perch stools or extra high seats in hospital waiting rooms for example, yet provide only toilets with low seat heights. Hospital staff won’t help pull you to your feet because of policies which forbid lifting/assisting in this way.  If that’s the level of support you get in a hospital – what about generally out and about?

Public venues could easily provide a raised toilet seat and staff to secure it, if they wanted to help people – but they don’t. Outside the home, if you can’t stand up from a toilet your can’t use it.

In one instance, this meant a disabled lady had to deficate into her hands in a standing position. We should be ashamed at not providing proper facilities in the UK. 

This month, we are publishing the stories of individuals who have the dilemma of not being able to use toilets outside their home – and why Changing Places are not meeting the needs of people who need height adjustable / higher toilets.