Fiona Harper sat down with Jenny to find out about how this campaign began and how we can learn from her experience. Jenny Whinnet is a parent, a campaigner and a former PAMIS member of staff.
Struggling with no facilities
What’s was it like for parents when Craig was born? I suppose the first time I noticed how restrictive life would be was when he was about 4/5 years old and we went to the Game Fair. And there was nowhere to change him and I ended up having to try and change him, do his personal care on the toilet seat with him across my legs and it was so, so difficult and I thought ‘where do I go from here? What do I do from here for him?’
That would be probably around 1990/ 91 so it must have been around about the same time that PAMIS came into mine and Craig’s life. From there I suppose I just accepted like many parents in those days that you had to time things if you were going to go anywhere, you have to time it, you have to change them just before you go out and then you rush back to change them when you get in.
Normally you could get away with 4 or 5 hours but there were many time in those early days where I’d come back and poor Craig was wet and you’re thinking ‘oh my goodness’, and the guilt because you felt you shouldn’t have left him that long. But if you had a hospital appointment or some sort of clinical appointment you didn’t have any choice. I always promised Craig that I’d give him the best possible life I could so then you started thinking ‘what are we going to do if we’re going out for the day?’ and what choices did I have? Well the choices I had if he got a bit bigger was changing him on the floor and that became our way of life, it was looking for the suitable thing first of all – I could still fit him on the baby changing mat longwise or a couple of them and then clean him when I got home. Then it came to be looking around for pieces of polythene – put that down with a blanket on it and then changing him but all the time you’re thinking ‘this is disgusting, I am changing a vulnerable child on a dirty toilet floor’ – that was the only choice we had, that was the choice that any of us had at that time, if we were taking them out for the day.
Because you’ve got a disabled child from birth I don’t think you notice the punishment on your own body because you build your strength up as the child grows, you’re automatically doing this until your back goes. It wasn’t my back that took the punishment, it was my neck and now I have real issues with my neck from those times. But for many parents they have bad backs from when their child is still young because of the punishment they’ve had bending down lifting up.
Traveling with Craig
I can remember when Craig was around 13 and I was going down to family in England. I used to stop off at one of the many service stations and I’d meet his needs there and this one time I stopped at the service station, wheeled Craig in, got to the disabled toilet and I couldn’t even get the wheelchair in. And my thought was ‘well what do I do?’ and I needed to change him, I couldn’t leave it, he needed care then. And the only choice I had was to lift him out of the wheelchair, carry him into this so-called disabled toilet and lay him on the floor, shut the door and there was barely room to lay him out and roll him to deal with his needs. And then I went to pick him up and I just went into a panic because I suddenly thought ‘I’ve got to get him up, can I do it? Can I lift him up? (he was dead weight) and stand up with him?’ And I just had a panic and the only way I could do this was to lift him from the floor onto my knees. I managed to get him up onto the seat. The awful thought was I was going to have to go out and ask a member of the public to come and help me and I thought ‘how undignified?’ the fact that I was laying him on the floor was undignified but then bringing a stranger in was equally so, and I don’t know how I did it but I got him into his chair.
How it all began
It must have been when Craig was about 5 or 6 that during a PAMIS carer group, a special interest group (SIG), us family carers and we were talking about the things that really matter to us. I don’t know who actually initiated the talk but certainly we all immediately agreed that the major issue we had was the so-called disabled toilet. We all turned round and said ‘you have to be a Paralympic athlete to manage in what was then a disabled toilet’ they weren’t disabled-friendly for anyone at all – we didn’t know who they were friendly for but not for the disabled. You couldn’t get wheelchairs in, you certainly couldn’t get 2 carers in, you couldn’t change someone who needed a Changing Places facility or anything bigger, and many of them were used for changing babies in so they had the drop-down baby changer but nothing for anyone that needed anything bigger. So they were not disabled-friendly whatsoever. And we all agreed that this was a big, big issue for us when we took our sons and daughters out. And Loretto, who was then CEO of PAMIS, picked this up right away and asked ‘did we want to take this on?’ and we said ‘absolutely’. A wee while later we then had quite a number of meetings looking at what would we want in a facility. We also decided to call it ‘Changing Places’ because that was the major thing – we wanted somewhere to change our sons and daughters who had profound disabilities. But we also knew that some of our parents, when they took their sons and daughters in, could weight bare but they need a carer on either side. So went through everything over a number of meetings that we felt was needed: the size, the fact that a lot of our sons and daughters have specialist wheelchairs – bigger than normal so we needed the space, obviously as they grew older no lifting and if there are professional carers involved, no lifting. So we knew we needed the hoist to make it feasible. Over a period of time, we looked at what a Changing Place should look like and what is needed.
I think in some ways we were probably quite lenient about the design and contents because at that time we had nothing so anything was going to be better than nothing. So in those early days as long as they had some sort of changing bench – nowadays we would probably look at the security, the health and safety of that – but as I said, in those days we were looking at anything was better than nothing. Probably we would squash something in the smallest space – we would even have a changing place and maybe a toilet somewhere else. It was a case of as long as we could have something that would enable us not to put our son/daughter on the floor that was great.
When Craig went to Angus College he was one of the first young people with PMLD to attend a college in our area and it was brilliant. I was thrilled that he was going to college and having this chance. The tutor that was going to support him was very keen to support and recognise the needs so we ended up with a wee cubby hole where they put a changing bench in and at first there wasn’t even a hoist we had to lift him. But it was something, we could manage, there was 2 of us to lift him on and off. But then of course they met the needs better by getting a hoist in. It was something better than nothing, and when you’ve got nothing anything will seem better than that because it was opening up my son’s life.
When we started campaigning we said ‘okay well we’ve got an idea of what we want but where do we want them?’ I very clearly remember one meeting where we had Angus councillors come to our SIG meeting and we were talking about this facility that we really wanted, I think we were looking at one of the parks if I’m not mistaken – somewhere that people went during the day. We said we’re looking for a Changing Places and you could see them not taking this on at all, because they’d never heard of it. And I could feel myself getting quite angry and I turned round and I said to one of the councillors “Next time you go out for the day with your family I’d like you to go into the nearest disabled toilet that you see and would you lie on the floor?” and he looked at me and I said “Just lie on the floor and then ask your wife would she lift you” and he was looking at me and I said “You lie on the floor and have your wife lift you up from the floor because that’s what I have to do if I take my son out anytime for the day, that is what I do” and he looked at me and the 3 councillors said “We didn’t realise”. And afterwards I remember saying to Loretto “I’m awful sorry, did I go over the top?” and she was lovely and she said “no you couldn’t have done it any better actually, get the message over by any means” which was true because that was the point, that he turned round and said that he didn’t know. That was the thing – the general public don’t know. They look at someone, and I suppose especially with children, it’s they don’t think, they don’t know. And when they get bigger and get to and adult well I think they think ‘they manage, maybe they can stand’. No one can think of it when they see unless it’s explained to them ‘this is our reality’.
We then thought ‘we need to campaign about this’ because we recognised this wasn’t just a Scottish issue, this was a UK wide issue. Loretto then linked with her ex-colleagues at Mencap and spoke to them, because they were the biggest organisation in England who had a special group within Mencap that supported people with PMLD. We knew it was strength in numbers.
Whether PAMIS was this first to look into Changing Places toilets I don’t know but I always believed that PAMIS were the first. We never heard anything from England or from Mencap prior to our initial group of parents who really took this and thought about it. Loretto very quickly recognised that getting Mencap involved and getting UK wide organisations involved was very important After that Loretto took to this information to big conferences on toilets and she and a PAMIS parent, Nessie and spoke for toilets, for our toilets that we needed.
But all this time there were still no changing facilities out there.
As my son grew I got carers. I needed carers. I would still lift him and carry him and put him on the floor when I was out (this was when he was 14/15). But in most cases when I was out I always said I needed a carer with me and looked for funding to support this. We used to go on family holidays and everywhere we had a minibus, so when I was going for Motability I spoke up and said that my Motability vehicle had to also double up for meeting his needs. So that entailed me having a minibus and changing him on the floor of the minibus. That, while better than a toilet floor, also had its own concerns because I felt very vulnerable as I’d have to park in quiet places to meet his needs for his dignity, so the you’d find yourself [thinking] ‘god, who’s that? What sound’s that out there? Who’s around my van?’ As time went on I was able to get my darkened windows in the minibus so that helped a bit.
Even when Craig was in his teens, there were no CP toilets around so you had to make do – myself and other family carers. But that again had huge implications on punishment of bodies. I would have to have 2 carers wherever Craig went because if he had to have his personal care needs met there would have to be 2 carers to do it, no hoists. So the carers would have to do manual handling. This impacted on you as a family and impacted on your health, your wellbeing, how you costed care needs for you child, your local authorities. It also impacted because I think that if people didn’t have their needs met properly, and I suspect many didn’t, that could have impacted on the person with PMLD’s health. And I know that it probably increased hospital visits because I think that if there were many, especially providers, probably did not take people out – their lives were so restricted that post-school a lot of them maybe didn’t have a really good quality of life. So consequently I think that would have impacted on their mental wellbeing and that can impact on health. So it was a vicious circle at that time.
The Birth of the Changing Places Consortium
Following these discussions with Mencap others got on board. There was another manager from Nottingham who really took up the banner and I remember the was a wonderful man. And he got involved and really took aboard and recognised the need, recognised what a difference it would make to people’s lives.
Mencap became really enthusiastic as well, and I think following discussions it was decided that we needed to get people on board to recognise this other areas other people – we wanted Scottish Government to be involved we knew it was really important that they gave the backing for this we would have some clout. So I think that following on from this and meetings that was the idea of getting the consortium together. And all the time there were families speaking out -individual small groups of parents and building this total pressure going on all the time. We had the wonderful video made with Lord Rix. So PAMIS went out and made this video that really highlighted what it was like for us as families and what we did and we – the different 5 families that had been there originally – we all put our input into this and we got films of us and I’ve still got a film of Craig on the floor-
This has got all the original people involved of how their sons and daughters and how it affects- and a physio speaking about what it was doing to us. So this was produced and this went out everywhere and it had an enormous impact. I can remember one of my strategic meetings when I was working I was on this group and it was shown at this group with all sorts of councillors there and MSPs in Aberdeen and there were men crying. They said “You do that with your son?” and I said “If I want to take him out what else am I supposed to do? You tell me what am I supposed to do, do I lock him up and not take him out?” It was then Aberdeen said their new shopping mall that they were planning would have a Changing Places toilet.
I think it was 2003/2004 that the consortium came into being. They asked Professor [James] Hogg to do some research. If we were going to do this what sort of numbers. People kept coming back and saying “What sort of numbers of people are we talking about? Who are we talking about?” Was it just our people with PMLD? We recognised that there were many people – those with complex needs from autism who couldn’t go into public toilets, mums who needed to be with their sons with autism they had difficulties they needed a facility they could go in, very frail elderly with dementia may have carers with them they would need to have somewhere where they felt comfortable and they need space if they’re taking wheelchairs things like that – and the disabled design at that time did not meet so many disabled people’s needs – people who had catheters or things – they all came and said “D’you know what? We need these facilities [too].” So I know Professor Hogg then went and did some research and did a document on numbers and which individuals would benefit from this facility.
Probably the percentage of the population who need them might not have changed but certainly those numbers have increased. So it [the research] was a really valuable thing to boost our campaign. And then in 2006 we had the official launch of the Changing Places campaign down at the Tate in London. And also combined with that we officially then also launched the award for the Changing Places – this is held at the new conferences – there is a champion CP toilet as well and the University of Dundee won it that first year. And Craig was presented by Lord Rix with a certificate for PAMIS which was wonderful. It was great because I could say that Craig, after agreeing to be videoed on a toilet floor, happily showing what this meant for him and to launch that official campaign to say ‘these are the facilities we need across the UK’ was enormous for me, enormous to say that he was part of that. It was lovely because he lived long enough to see the difference, to see us get our first one.
The next stage was we got these toilets into the building regulations and we got BS8300 [Design of buildings and their approaches to meet the needs of disabled people. Code of practice] with the recommendation that- the Changing Place, the size of it, the design of it that took in everything [into consideration] that through discussions and collaboration we knew what we wanted within one of these facilities. Now we have to get this ingrained in law.
The next step
Now we have to get this ingrained in law. That’s the next stage for us. The thing you have to watch is that developers will go so far and sometimes alter things and I’ve had a couple of facilities in Aberdeen that sadly they have taken a shortcut and ended up having to spend more because it’s not worked. So it is a learning curve still for some but certainly from the launch in 2006 we have seen it grow and since it’s gone into building regulations it has really expanded.
It was very slow, while Craig was still with us, it was still very slow. He lived long enough to see the first ones which I’m thrilled about. The other thing that was wonderful was that NHS Grampian also took up the cause because they’d seen the video of Craig lying on the floor. But I had also relayed a story about when he was a teenager and I had to take him for an appointment at the children’s hospital and halfway through the waiting he needed his personal care and there was nowhere, this was a brand new built children’s hospital and they had not put in a [CP] facility and so I asked a member of staff I said “Unfortunately my son needs personal care” and it was in the brand new x-ray department and they showed me into a room that had glass in the door and the door couldn’t lock and this was a teenage young man so – not good. So to be fair not long after that he transferred up to the adult hospital and the gentleman who was in charge of the equalities mission within NHS Grampian asked me onto his group and one of his first missions was he wanted to put in facilities for adults who needed a Changing Places, it took time, it didn’t happen overnight, there were a lot of issues to be covered with funding and also as far as NHS Grampian was concerned about health and safety. But we got there and we got one in Aberdeen Royal Infirmary and we have one in Woodend Hospital as well. And now there’s one in the children’s hospital as well. So it had worked but it’s taken time.
Campaigning became part of life
It’s always there, I think it’s always part of me. I mean obviously I worked with PAMIS until 2013 as a member of their staff. It was a major issue that I continue to take up – I met with MSPs, I worked with the disability groups and this NHS Grampian group so it was constantly there, I also had another parent who was in my area as well. I worked with Loretto constantly on it while she was there [at PAMIS], I’ve travelled and spoken at conferences about it. I’d go to official openings and I took another young man who I am caring for now. So I think it’s something that’s always there like so many other parents who have taken up this campaign. It’s always there, wherever you go you see something and say ‘that’s not right’ you’ll go and speak to somebody, you don’t sit on it you go and speak to somebody and say ‘do you realise you’ve got the space here for a CP?’
Finding out about facilities
This last summer we went to the Highland Show and we struggled to get to the disabled toilet only to find it was ridiculously small. I went to speak to someone about it. It was a big venue which held events all the time. The lady at reception said “we’ve got a Changing Places toilet there” and I went “What?! Why haven’t you promoted this?” There was nothing in there literature to say that Ingleston has a CP toilet, I was horrified. So the other side of the coin is to make sure that where people have taken up the cause they let people know about it.
What would I say to families who are maybe starting out on this journey?
Make sure you have the directory where there are CP facilities – make sure you’ve got that. But if you need to go to places and you find that there aren’t any and you’re struggling let PAMIS know, because there’s power in numbers. Don’t feel you’re alone, that’s the thing you’re not alone. This is something that we need across the board – we need to work together on this. That’s not to say don’t use your MSP, your MSP can be a powerful ally with you and you need to let them know – your councillors, let them know. This is not something to be hidden- because I always remember, I go back to when I was quite outspoken with those councillors and how mortified they looked and said “We just didn’t know”. The point is people in a position of authority may not even have it on their radar, may not even think about it but once they’re told ‘I’ve just had to change my child on a toilet floor’ then that is a big wake-up call to them.
How do I feel about Scotland having over 150 Changing Places toilets today?
Brilliant. I mean there’s still an enormous way to go, I want to make certain that there’s one in every new shopping mall and every existing shopping mall. So everywhere where our folk go – every leisure centre. Now with Self-Directed Support people have got their own budgets and are getting out there but their lives are still restricted because there’s definitely still not enough CP facilities out there. There’s a long way to go and we can’t drop our guard in promoting this and keeping this campaign going but what I would say is, compared to me and my wee boy on that dirty toilet we have come a long way. From sitting frightened and laying him on and thinking ‘can I get him up?’ and that horrible feeling of letting your child down we’ve come a long way from that.
But let’s not drop the guard let’s keep this going so we’re still opening up their lives.
If you would like to know more about the Changing Places campaign go to www.changing-places.org
You can also download our new Campaigner pack here https://drive.google.com/file/d/1Gh…