All change for changing places

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News from The Changing Places campaign:

We wanted to share the news that Muscular Dystrophy UK is taking over from Mencap to lead campaigning activity across England, Wales and Northern Ireland, and will co-chair the Consortium alongside PAMIS.

More about this news can be found at:

http://www.changing-places.org/news/changes_to_the_consortium.aspx

Aveso say:

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Slings, hoists and money pits

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Another disability money making scheme?

Recently I had the annual inspection of my ceiling hoist. My hoist covers the area from my bed to my toilet and wheelchair. The inspection includes a visual check that my sling is safe to use. In fact, the law requires a sling inspection twice each year. It costs around £100 for a hoist and sling safety assessment.

My sling is as rugged as hell – in fact I can’t imagine how it would get torn or ripped without slashing it with a knife several times!! Basically it would probably last me 20 years.

However … and here is the rip-off, the sling can fail and be declared instantly unusable if the serial number can not be read.

Now, slings are made to be washed – and just like clothes, the little cloth tag can begin to show faded writing. So my £500-600 sling could be assigned to the bin after a years worth of washes! A perfectly maintained and safe sling, thrown away because of a faded number.

Will companies make a serial number that is permanent that can withstand several washes? Apparently, the word on the street is that key companies were asked to do just that but refused because it brings them greater profits by forcing everyone to repurchase new ones. Imagine schools and hospitals having to pay out thousands each year to get new slings that are otherwise safe to use.

Equally, a company can say they no longer ‘support’ a particular hoist model and the user also has to throw that out within six months as they are automatically deemed unsafe.

The overall result is that individuals, schools and hospitals, public swimming pools, social services and companies who have Changing Places hoist equipment are throwing away large amounts of equipment that may still be usable for a number of years.

Products that are purchased are now being chosen because they are cheap to replace and not because they are safe, dignified, comfy and the ‘right one’ for the user.

Calling all manufacturers…

I invite manufacturers of patient slings and hoists to comment on their policies and manufacturing processes where efforts are being made to ensure serial / product numbers can last the lifetime of any sling and that ‘discontinued’ products can still be supported for the life of existing equipment . These would also come under the companies policy to cut down on environmental waste.

Tell it as it is – for world toilet day.

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19th November is World Toilet Day , a global opportunity to explain how lack of toilets impacts many aspects of life.

Join our Tell It As It Is event to share your story about the lack of usable and accessible toilets in the UK.

Starting on the 18th of November, we will be putting up a Facebook post on our page – inviting you to tell it as it is.

How does the lack of usable / accessible toilets impact your life?

Whether it’s just a sentence or a short story or photo – please do drop by and share your story by replying to that post on the 18th or 19th.

You can also join our Twitter hashtag #tellItAsItIs and also use the main tag #WorldToiletDay

*All replies will be moderated and those advertising a product or not meeting our adult and child protection policy will not be displayed.

Rare Breeds Farm trip – where toilets were even rarer.

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Last week I went to the Rare Breeds Centre near Ashford in Kent. It was a day out with my husband, my sister in law and nephew to enjoy all that Highland Farm had to offer.

I never thought that I'd have any trouble finding a toilet because the farm is run and owned by the Canterbury Oast Trust (COT). They support adults with learning difficulties (some of whom use a wheelchair) who are working and volunteering around the site.

[Source: Rare Breed Centre website, 2017]

I imagined it to be super accessible in the toilet facilities although I did know from their website that they had no hoist or bench.

First toilet attempt

The first thing we do when we go out is check the toilet facilities to see if we can manage. My husband would be lifting/dragging me from my chair to the toilet. I am female – with a male assistant which becomes very relevant when we find out there is no unisex toilet in the outside toilet block. There is only an accessible cubicle in the men's and women's toilets. I generally can't use cubicles as they are not big enough for my extra small power chair plus assistant.

This causes a temporary panic. What if we had to go home or drive several miles into Ashford to find a toilet? This was supposed to be a lovely once a year opportunity for a day out with our little little nephew.

Attempt number 2

We went inside the restaurant and I saw there was a sign to toilets and baby changing. Hurrah. I ask a member of staff where I could use the toilet and she escorted me through the doors I could see marked for more toilets. There was a ladies toilet with a large cubicle – so my husband would still have to loiter outside the cubicles.

How would you react if you were a women going to the loo and a man was hanging around inside?

This is embarrassing for my husband and can you imagine a parent's horror when their child reports a man was in the toilet. This is a farm for children and staff / volunteers with learning difficulties – which could lead my husband open to abuse allegations or scare the living daylights out of people.

Also, the toilet (below) had a none standard support rail meaning it offered no support when sitting on the toilet – ( it's located too far forward) so not usable at all for me. The hand dryer is not reachable in the corner and there is no emergency cord.

All in all at this point there were no usable toilets.

Attempt three

I had attended conferences and training events in the adjoining training centre, so I knew I had used the toilet inside. I asked if I could use these and staff went off to see what they could do. Thankfully they opened up the centre so I could use the toilet ….. we'll sort of. This was not a good experience.

I had forgotten that the accessible toilet room was built inside the Men's toilet facing the urinals.

Luckily as there were no events on, the toilets were only used by staff so limiting the chance of them being used whilst we were in there.

The problem here was that the accessible toilet room (inside a room!) was smaller than a standard unisex toilet. In fact, as I parked next to the toilet with my back wheels against the wall – the door wouldn't close!!

We had to take of foot plates etc and tuck my feet in to be able to close the door. My chair is a custom design for a small adult so a regular adult chair user would possible not fit.

There is meant to be clear space under the finger wash basin and a mirror you can see from a sitting position but as you can see these were not provided.

Being a men's toilet there was no bin for sanitary waste and incidentally no bin for continence pads in any toilet we saw.

The toilet has no emergency cord which might be a problem for some people.

If I was a women who could independently use the toilet then I would not be at all comfortable going into a men's toilet block.

If I had a female carer then we are back in that awkward lurking situation.

I will be doing a formal complaint to see if they can come up with a solution to some of these issues.

When surgery is the only option.

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Every day, disabled women are choosing surgery because there are no usable toilets outside their home.

Sometimes it's an ostomy bag for poo or more frequently a supra pubic catheter.
A catheter allows urine to drain from the bladder [through a hole in the skin] into a
bag or through a valve into a bottle/toilet. It's a big life changing decision.

Getting surgery for a catheter is the most talked about topic within women's forums and social media groups.

Read above one woman's experience.

The reason is not often for medical purposes – but simply because toilets are not accessible / available. They don't have the right amount of space or equipment to be usable. Sometimes they aren't provided at all or are padlocked. If you need a hoist then you only have a choice of around 1000 toilets – across the whole of the UK or Northern Ireland. There may be none in the county you live.

Catheters can cause regular infections and several other medical problems – yet bring an element of liberation and the ability to leave the house. They don't remove the need to manage menstruation hygiene though and many women also choose contraceptives or surgery to control this (oral contraceptives pose a high risk for blood clots in women who aren't active) – because they can't get on the toilet.

Disabled women experience the most discrimination when it comes to using toilets. They take the most life changing health risks. This has to change.

Have you had surgery because of no usable toilets? Tell us in the comments below.

Helpful or not – petitions

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There are over 80 petitions on Change.org calling for signatures to back calls to governments and businesses for accessible toilets. Most are by individuals calling particularly for Changing Places toilets.

Are petitions helpful?

Psychologically petitions and demonstrations by disabled people and carers are useful – providing the 'I feel I am doing something rather than nothing'. People who sign genuinely want to say 'this needs to change'. However, the reality is that petitions rarely achieve results.

No amount of signatures is going to change the law or monitor adherence to building regulations. In the UK, the government have heard, via parliamentary debates, how we need accessible toilets. They end with empty promises.

As we speak the draft of revised access standards has been drawn up – setting British standards for what could be used in buildings which last over 50 years. They don't include any change to toilet provision. They are based on the dimensions of wheelchairs, for example, from 20 years ago. Petitions won't impact these.

Dilution of support

Petitions aim for x number of signatures …. people might sign one or two but 80? If campaigns were centralised into one petition there could be thousands of supporters rather than a few hundred.

Change in strategy

The movement to ensure toilets for all is disjointed. Often it's based on promoting the needs of children rather than the needs of disabled people of all ages. People with obesity, dementia and autism are often totally ignored. Many campaigns are based on the need for hoists and changing benches – yet we still have toilets being built that are supposed to follow strict building regulations, but don't for 'independent' disabled people. There are failings at every level. Equality laws do nothing to persuade businesses that disabled people need accessible toilets.

What can we do to actually make a difference?

  • Share a petition rather than recreate one for yourself
  • Look out for opportunities to comment on building regulation guidance, local access consultations, health consultations etc.
  • At every opportunity provide feedback about toilet access. Use social media, review websites, council feedback forms, patient feedback cards at hospitals etc.
  • Use formal complaints procedures.
  • Write to your MP
  • Provide witness statements for parliamentary debates

Sounds like a lot of effort? That's why it's easier to sign a petition and have our social guilt relieved – we've done all we can, right? Now everything will be ok?

No it won't – but deep down you know that.