Guest Blog. It meant I could have a drink.

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

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

Our first guest blogger shares their enlightening story …

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

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

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

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

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

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

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

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

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


Care and assistance at home

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

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

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

1) Poor equipment provision resulting in unnecessary surgery

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

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

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

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

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

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

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

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

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

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

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

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

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