Why should we?

Changing Places toilet selfie

Why should we install a changing places?

I can understand that many people have not heard of Changing Places toilets. I understand there’s a valid argument that venues just don’t know about them.  However once they do know….?

I worked in architectural practice up until 2010, just after the guidance was entered into the British Standards (BS 8300), and I honestly hadn’t thought about the building regulations ‘standard unisex accessible WC’ not being adequate for all disabled people.  Don’t ask me how I didn’t know as it seems so obvious now, but it just hadn’t occurred to me what people would do if they couldn’t get onto the loo on their own ! How could someone help to lift them in that little room and without any hoisting equipment!?  And what if you were not a baby (maybe you’ve not been a baby for decades!), but wear an incontinence pad and need assistance to change it? Where would you lay down?

Changing Places toilet selfieIt wasn’t really until my daughter was growing too big for baby changing tables that I began to wonder if I was missing something, and of course when I began to look around I found the Changing Places campaign.  A campaign that had grown out of the frustrations of a determined bunch of parent carers deciding to take action about this lack of provision.

I was excited to find that they had secured a pretty comprehensive entry in BS 8300, recommending the type of buildings these facilities should be installed in.  And there is also reference to this BS guidance, and to the Changing Places Consortium, in the Building Regulations relating to building accessibility (Part M).

However it soon became clear there really weren’t that many of them actually installed.

Ok so it’s a new standard?  There will be loads in the pipeline right?

Now that the need has been identified and quantified in BS guidance, there will be lots of new buildings automatically including them, and lots of existing venues will start installing them…. right?….right!?  Erm….no, not really.

Over the last year or so I’ve gotten to know a number of campaigners pretty well, several of them are fellow SWAN UK members with children with complex undiagnosed conditions, some have older children and some are adults who need the facilities themselves.  Unfortunately their experience has been negative on the whole.  Of course there are some exceptions and some lovely positive stories of venues, on hearing of the need, step up and even enthusiastically take steps to ensure a changing places toilet is installed in their new building or refurbishment.  Some see the benefits of inclusion straight away without much, or even any, persuasion.  Two such projects that spring to mind are Longdown Farm and Cornwall Services – both fantastic examples of how it should be, how I’d have expected it to be.

However the far more frequent response seems to be: “not our responsibility”.  Even when confronted with the fact that their disabled customers & carers have to leave early, risk falls & back injury, lay on toilet floors or even not come at all, the fact that changing places are not compulsory, that there’s no minimum requirement to cater for ‘our kind’ of disability, means that venues see changing places as an extra. Something over and above what they need to provide.  Their competitors haven’t had to do it so they don’t want to be the ones who have to spend the extra money.

I have to say I have a little sympathy for this.  The changing places standard is significantly bigger than designers and developers are used to as an accessible toilet, and of course floor area = cost.  Without clarity of who should install them, and in this financial climate, I can sort of understand individual organisations backing away from responsibility.  My feeling is that there should be a review of the whole ‘suite’ of sanitary facilities we have in our regulations as minimum standards.  I think there’s opportunity to have more inclusive options, for smaller family friendly venues for example, where perhaps the adult and baby changing areas are not put in separate rooms but a single family toilet area is installed, so the room will be used by a greater number of customers and business’ will feel there is more ‘value’ in if for them? But that’s another blog post I think!

As I say, these facilities seem to be viewed (by most?) as an ‘extra’, as something for a minority and not their responsibility to cater for, so thought I’d look at some figures I could find online which (I think!) illustrate clearly that’s not the case (although even if it’s just one person that’s being excluded, isn’t that one too many!?).

The Changing Places Consortium website tells us there are over ¼ million users in the UK who need a greater than the average accessible toilet, in a population of 65.1M (ONS).

So that’s (at least!):

1 : 260 people

1 in 260 may not sound like a huge number of people on first glance, but just to put that into a bit of context, here are some building venue capacity stats:

Blackpool Tower Ballroom (who do have a changing places toilet I must add – #IncLOOsion!) can accommodate:

  • 900 people for a banquet (statistically 3.5 changing places users per banquet),
  • 550 for a dinner dance (statistically 2 changing places users per dinner) ,
  • 1100 for theatre performance (statistically 4 changing places users per performance).

Wembley Stadium (who, again, do have a changing places toilet) has:

  • 90,000 seats (= statistically 346 people per match needing CPs)
  • 2,618 toilets (including 1 Changing Places Toilet!) in this one (granted, very large!) venue, yet there are only *895 Changing Places in the WHOLE UK!

For an area with such high density of entertainment & tourist venues, the west end of London has particularly poor provision of changing places, and I don’t mean to single out these two over any other (because they ALL should have one) but, for example:

The Royal Opera House auditorium seats:

  • 2,256 people ( = statistically 8.7 people/performance needing CPs)

The Odeon at Leicester Square has:

  • 1683 Seats (= statistically 6.5 people/screening needing CPs)

So, some of my questions to businesses who are questioning whether they should have better accessible toilet facilities in their building or venue are:

  1. Do you have toilets for your other customers? Why would you expect our family to leave your venue to find a toilet somewhere else when you don’t expect other people (who are most likely more mobile!) to do this?
  2. What is the capacity of your venue? If it’s greater than 260 people, then statistically at any one time there may be someone who needs a changing places toilet using your service.  And they are most likely to be there with friends and family (or often at least a carer), and if they have to leave early, they’ll all leave!
  3. Do you see yourselves as an accessible building/venue? Then shouldn’t that accessibility extend to all users?

I’m not suggesting tiny coffee shops should be expected to provide fully accessible facilities (although of course that would be lovely and very inclusive!), and perhaps some people may say I am too close to the issue to see it objectively, but I am really struggling to understand why there is any debate as to whether meeting this need should become a minimum requirement in larger publicly accessible buildings, ones that provide toilets for everyone else!

*total figure in November 2016

supermarket logistics

We are very well serviced in our village as we are within walking distance of various grocery stores, a butchers, bakery, deli and chemist! However there’s only so much I can carry, as I always have at least one of the children with me, so I do tend to do at least one supermarket shop each week.

I know I really could order my shopping online, but I’ve never found it as convenient as it sounds, and anyway, I like going around the supermarket picking out exactly what I want, seeing the items, checking out the special offers, spotting new products and maybe stopping off for a coffee and maybe a piece of cake!

One of my favorite new ‘tech features’ is the scan as you shop system – which thankfully is available in both of the supermarkets close to us. It just makes things so much easier! Twinkle has low muscle tone and will flop sideways, forwards or hyperextend backwards, so she needs more supervision in the trolley seat than the average child. She doesn’t have danger awareness, so she doesn’t understand that she could fall out (- or that it would hurt!)!  So, especially at the end of a trip around the supermarket (as she’s getting tired and bored!), trying to go through the normal checkout is tricky – loading the conveyor and then reloading the trolley while keeping the children safe in the trolley.

Now that Twinkle is at pre-school part-time, I try to do our supermarket trips when I just have the wee dude with me. However that’s not always possible – especially in an ‘Eeek! There are no nappies left!’ emergency!

IMG_2371Getting around the shop with both children is a bit of a challenge. Twinkle (at 4.5) is really much too tall for the standard toddler trolley seats. She can’t walk, so we have several methods of getting around:

Twinkle’s Buggy:

Sometimes we go around with Noodle in a carrier on my back & Twinkle in her chair. This is fine (particularly if we’re also popping for a coffee!), but it means we can only pick up a basket full of essentials, so Noodle and I have to come back at a later date when Twinkle’s at pre-school. Unfortunately the wheelchair type trolleys don’t fit onto a child’s sized wheelchair/buggy.

Nappy cushions
Nappy cushions

Trolley (method 1):

Until recently I have been putting Noodle in a carrier on my back and Twinkle in the trolley seat (or both of them in the twin trolley if I can find one!). However she’s really much too tall and a bit top heavy/precarious in the toddler trolley seats. Also, I really don’t like her sitting in them for any length of time as it puts quite a lot of pressure on the backs of her thighs as her long legs dangle from the short seat. I try add a little more depth to the seat and padding to the edge with the padded fleece cover from her buggy and I also will go straight to the nappy aisle and stuff a of pack of nappies either side of her for some makeshift cushioning!   If I have been organized enough to remember it!, we can use her Firefly goto seat for much better support (which really helps, but we still have the same problems of height).

IMG_2689Fleece seat liner

Trolley (method 2):

To avoid the problem with the little toddler seat, I sometimes put Noodle in the seat and sit Twinkle in the actual basket of the trolley. I often see other preschoolers sitting in trolleys as I go around the supermarket, so it’s doesn’t feel like a completely crazy solution! The fleece cover from her buggy again can double up as padding so she’s not sitting and leaning on the wire directly, and (again!) I head straight for the nappy aisle for some ‘cushions’! It’s really not ideal, but I feel it actually provides her a more comfortable seat than the little toddler seat – however doesn’t leave me much space for shopping and I have to be careful what I put within reach!

There is another option…..

Firefly have developed a fab new adapted trolley with a supportive seat for a child with disabilities, based on their Goto seat (the Goto Shop). The height of the seat in the tolley is lower than the usual toddler seat, so you loose that precarious top heavy issue, and the depth and back of the seat are increased in size for a larger child who needs support.  It does reduce the capacity of the trolley but not so much as if you have a child actually sitting in the trolley as I often do!  Sainsbury’s supermarkets have taken up these trolleys in their stores, and we’ve come across them a few times (it’s amazing how excited you can get about a supermarket trolley!), but unfortunately there isn’t a Sainsbury’s store near us.

It would be fantastic if more retailers had at least one available in their stores!

I know that Tesco have a similar adapted trolley which is fantastic, however it doesn’t provide enough support and security for Twinkle so it only works for us when we bring our own Firefly Goto seat with us.

I had a nice chat with the duty manager at one of our other local supermarkets this week when I was in about the Firefly trolleys and he seemed really enthusiastic about the idea! So, fingers crossed for more availability…….watch this space!



starting the process

This is going to be a weekend of planning for us! The start of the process of adapting our house – exciting but daunting too!


Our house is a Victorian cottage of a fairly standard layout. It needed a lot of TLC when we first bought it (it had no central heating system, a fetching pink and avocado 
bathroom suite and no fitted kitchen!).  As a couple of architectural designers this suited us perfectly, as we love a project! However at the time Twinkle was just a few months old and we had no idea about her neurological condition or how that would affect our future.  If we did, we would have made some different choices in the design.

It has been an emotional journey to get to this point too. Twinkle’s condition only very gradually revealed itself to us and it has taken time for us get into the mindset that we do actually have a disabled daughter and that does and will continue to have an impact on how she, and the rest of the family, can use our home.

We therefore find ourselves looking at grant funding for making some adaptations to allow our little Twinkle to join in fully with family life: https://www.gov.uk/disabled-facilities-grants/overview

Our lovely Occupational Therapist made her first assessment visit to the house a few weeks ago and we have a follow up visit, with both her and a building surveyor, on Monday. We are taking this weekend to arm ourselves with a strategy on how we’d like to progress the project.  We want to ensure that anything we do to improve accessibility now will be as flexible as possible for Twinkle’s ever changing needs (we are not ruling out the possibility that she may be able to get up the stairs under her own steam one day!) and we don’t want to scupper any further alteration options for our home in the future……….not to mention trying to keep things stylish (well as stylish as you can be with two small children and two dogs!)!