I was born with compression of the spine, but it didn’t materialise until I was going into puberty. I would be walking along, and I would just fall and lose sensation in my legs. At first my family thought I was being clumsy, then at the age of 11 or 12 I got diagnosed. That meant I had to use a wheelchair; I tried to be ‘normal’ and didn’t want to be different. Every day when I wake up, I don’t know what kind of day it is going to be and how much I will be able to do. Some days I won’t have any use of my limbs from the neck down. If I’m having a good day, sometimes I don’t want to go to sleep so the good day can continue.

I have been living in this house since it was built in 1998. There are seven properties here which were newly built and already adapted for wheelchair users. They were originally built by a Christian organisation as a legacy before being taken over by a housing association.

There have been ongoing issues with the water supply since I moved in. I hadn’t been here long before we started to get leaks and it turned out that the copper piping in the property was not to the specified standards and had to be replaced. It stained the toilet blue and around the bath. My neighbours and I were moved out whilst it was resolved.

Evelyn in her wheelchair

I used to have an immersion heater and tank which was changed for a combi boiler. Changing the boiler type meant there was not enough water pressure. Whenever my carers came it wasn’t possible for me to use the wet room and sit under the shower whilst they got on with some washing or even ran another tap or flushed the toilet. The heating also didn’t get hot enough, which meant that there was only one room in the house which was warm enough. I have Raynaud’s which affects the circulation in my hands, which I take tablets for. I feel my condition got worse after the boiler was changed as it was more difficult for me to keep warm. It also meant that my fuel bill was more expensive as I had to use electric heaters in the house.

I had complained to my Housing Association and got as far as making a Stage Two complaint. I felt I was going round in circles. I was being told by them I should make a further complaint. This is when I was put in touch with Aspire’s Housing Advice service and spoke to Frankie.

It’s been really helpful because Frankie works in a systematic way and it helped me to calm down. It was very reassuring. She was ever so supportive and understanding. She made sure the Housing Association went through her rather than me. She helped to take some of the stress off me, because when I met her, I was a complete wreck.

The housing association agreed to changing the heating system. Whilst they did the work, they put me up in a hotel, but they hurried to finish it. They shortened my stay so that when I came back the electrics weren’t finished, they hadn’t put the beds back and there were some issues with things being unfinished. Frankie arranged for them to come back and sort everything out.

Frankie also arranged for me to have a contact at the housing association so that I can speak to the same person when I have an issue. This helped a lot as I found it difficult to keep having to explain the same thing to different people. It has made things easier for me to cope with.

I’ve now got an Eco System boiler, so the tank that was in the loft is now in the cupboard. Now more than one person can use the tap and I’ve got heat!  The problem with the blue water hasn’t gone away but I decided that once everything is finished, I will try and get it sorted out.

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