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.
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.
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.