Yesterday didn't end up being such a good day for me and I was too upset and angry to post an update. Unfortunately my experience was one that I know so many of you share on a daily basis, and it just goes to show how much work there is still to do in educating and informing a huge number of people, even, sadly the so called professionals. For the benefit of those who are not familiar with the challenges people like me face, let me tell you about yesterday... We took my younger brother out yesterday lunchtime and dropped him off where he needed to be and then decided to pop to Tesco in Chorley for a few bits and pieces. I was a bit embarrassed going around the shop because I knew I needed changing and I knew there wasn't a Changing Place in the store. So, we checked on the CP app on my phone and found that there were supposed to be 4 Changing Place facilities not too far away. We looked at the information more closely. One was closed at weekends, two were at a football ground, but only open on match days (and there was no match on at the time) and the 4th, which fortunately was the nearest, was at the hospital, Chorley & South Ribble Hospital. Although we now knew there was one at the hospital we didn't know where it would be in the hospital so we just took a chance and drove there. We were there within a few minutes, but we couldn't find anywhere to park in the first 3 car parks we tried and all the disabled parking spaces were taken. We drove around the back of the hospital and managed to park but there was only one disabled space, already taken, so we had to pay £2.50 to park. Fortunately it was a nice day and not raining, so we picked up all my changing gear from the car and headed off to find an entrance. We passed a few, up and down kerbs, some of which didn't have dropped ramp access and found a sign pointing to 'entrance'. When we got there it was locked and a sign in the window said that this entrance was only open Monday to Friday. There was a hospital map on the wall however, confirming that there was a Changing Place and that this was near the main entrance (which we couldn't park near!) Ceri went across a grassed area to another door which was open, so we headed back around via a more accessible path to get there. Once inside we realised it was a staff area, with canteen and common rooms, but there was a lift up to the next floor. We got out of the lift and appeared on a long corridor and by chance took the correct turn and found a sign to the toilets. We were following the sign when we happened to spot the CP room! Great! But... it was locked. No problem, because there was a notice on the door saying that if we needed access, just to phone '0' from the phone behind us. Ceri phoned. After 2 attempts, the main switchboard answered. He explained our situation and where we were. The guy on the phone didn't know what the Changing Place was or where it was and could only locate us from Ceri telling him the location of the phone! So, after explaining the problem, he said that they didn't have a key at reception but that we needed to phone the porters who would be able to help. So Ceri rang the porters' extension and they simply dismissed the issue saying that they didn't hold keys for that room and that we'd have to phone domestics. So once again we hung up and phoned the extension for domestics. It rang and rang and no answer and eventually an answer machine responded saying that we could leave a message or if the enquiry was urgent, to ring extension number so and so, which WAS the extension we had rung! By now, we were all getting pretty annoyed and I was feeling very uncomfortable. So Ceri phoned the switchboard back again and spoke to the same, original guy and explained that 2 phone calls later we were no further forward. He decided to pry further and asked what it was that we 'actually' needed!! Grrrr! His next suggestion was to try the site manager, but that in order to do so, Ceri had to hang up and ring him on a different line so that he could transfer our call through to their office. Ceri did this, and when the site manager's office answered the voice said that she would try and get someone to come and sort it out but that there was a disabled toilet elsewhere.... Grrrrr again! She decided that she needed to phonethe Estates department and eventually Ceri spoke to a woman who said she would meet us and give us the key. She asked if we could go to reception to meet her, but when Ceri explained where we were she realised that we were waiting at the CP room! A few minutes later, though it felt much longer, the lady appeared, saying "Sorry about this but I've been trying to contact the porters for a key and they said they don't have one, apparently it's been lost" (What? The one and only CP room key in the whole hospital?!) as she approached us, a young porter passed in the other direction and she asked if he was any good at breaking doors down?! He said, "No, why?" and she explained. He replied, that someone else was trying to use the room yesterday and they couldn't get in either! (What's the point of having a CP toilet if no one can get in to use it?!) Fortunately the corridor was quiet, as she proceeded to ask (as the previous guy) what we actually needed in order to change the 'young man'. My mum explained that we just needed a bed or bench and ideally a hoist, but that between her and Ceri they could lift me if necessary. She was very apologetic as Ceri asked why, in a hospital of all places, is the toilet room locked anyway? He asked her if their staff toilets were locked, or if the main ladies and gents were locked. Of course, they aren't. So why do disabled users need to ask for a key to use the toilet? She asked what was in the room. Ceri and mum told her, that if it was a CP room, as indeed the signage suggested, that it should have a height adjustable bench, a hoist and a toilet etc. She seemed surprised and then admitted that she'd never seen it, or even been in the room. This was the duty site manager of the hospital!! To her credit, after all this hassle, she then asked me if it would be okay to take me to a nearby ward to find a private bed where I could be changed. I was unsure but agreed as I was beyond desperate by this stage and in some discomfort. She took us to the nearby medical assessment ward, not ideal, as the potential risk of infection from other patients in any ward is high for someone with my condition. However the ward nurses were very accommodating and it was no problem for us to use a bed which we could curtain off. Fortunately we had all we needed including bags and wipes and given the absence of a hoist (or at least to save the time it would take for a porter to be called to bring one from another ward) mum and Ceri lifted me. I was soon freshened up and back in my chair. We thanked the ward staff and left. When we got back to the car, we noticed that it had taken 50 minutes from parking up to getting back to the car! So what lessons need to be learned? 1. Disabled people and wheelchair users do need to use toilet and changing facilities and should have access like anyone else. 2. If companies or organisations have CP rooms, they are no use unless they are accessible and open. 3. CP rooms need to be signed, not just on the door when you get there, but signed all around the building to make them easy to find. We cannot sniff them out with a 6th sense! 4. Disabled users should have access to disabled parking facilities near any CP facilities and not have to pay £2.50 for the privilage of going to the loo! 5. All staff, and especially reception staff need to have full awareness of what and where the CP rooms are and how they can be access 24/7 if they have to be locked at all. 6. It shouldn't take 6 phonecalls and conversations with 6 different people and an answerphone before someone can be changed or use a toilet, And remember, of all places, this was in a hospital!! if hospitals can't get this basic need right, then what hope have we got for shops, service stations, leisure centres or anywhere else?! Needless to say, our plans for the rest of yesterday afternoon had to be changed, as apart from our frustration, anger and upset, I was totally exhausted and embarrassed by what had happened. So although it's not the best story to share with you, I think it's important that everyone realises what the daily challenges are for me and many 1000s like me. If you come across any of your friends or colleagues who don't think my Campaign is important, ask them if they would be happy to wait 50 minutes, ask 6 people and pay £2.50 in order to use a toilet?! I'm so glad of the support of my family and many friends as we campaign for something that we shouldn't need to fight for at all! I have been advised to write to the Chief Execitive of the Hospital Trust, a TEACHING Hospital at that! They have a lot to learn, and I'm more that happy to take my presentation to the hospital and talk to the Board and the staff. Here's hoping for an easier day tomorrow! Thanks Zack and team