We have been looking at replacing our very poor shower (terrible flow and temperature control) for some time this year, without being able to afford it at the moment, unfortunately. The reason why it is getting urgent is directly connected to Gaelle's skin and her recurrent infections. When her eczema flares up, shower time can become a very painful and stressful time indeed as the contact of the water hurts her. The shower being so slow and unpredictable makes it a real dread for her and whoever is going to help.

We have applied for some financial help from the Family Fund (see next blogs) but they weren't able to help with it as it apparently falls under a statutory duty via the Occupational Therapy Service for children with disabilities. The OT service  is supposed to help with 'independant living' and covers improvements to the home such as washing facilities that are not adapted for the person referred. They may pay for part of them or all of it if the assessment is positive.

So at the end of October, I phoned the OT service and explained briefly the point of my self-referral. I expected to be sent a long form to fill in but actually, the person said she would file my request and somebody would look at it and contact me again. Easy!... The next day, John got a phone call for the OT stating that the referral had been dismissed!!... without even contacting me.

So the next day, I went to Citizen Advice Bureau and even though they couldn't really help, they mentioned the fact that most referrals are done through the family GP. Based on this new piece of information, I rang my GP and got an appointment for a few days later (infuriating meeting which I decsribe in my next blogs). Then, I rang the OT (again) and explained that they would receive a GP referral for my daughter and could they please re-open my file... This time, I explained all about the need for this new shower, the costs involved, the outcomes (how it would change her life and make her more independant), etc! The next step, if the Manager recommended it, would be a home assessment by an OT Officer and then, perhaps some financial help to get the shower.

A week later, having not heard about the service and wondering whether they got the GP referral, I phoned them for the third time. The person said that she was just about to send me the approval letter (!) and was still waiting for the GP referral I mentioned to her colleague a week before... So I asked on what basis they approved my referall without the GP's one - by then I was starting to get really confused! She replied that my second phone call - during which I explained it all - convinced the Manager and she therefore had recommended a complete assessment on 'a medium priority level'!!

I contacted my GP about the missing referral letter and it turned out he had sent it to the wrong building...

It's now been a month and no news about that assessment. I will probably give them a ring tomorrow...

Are 'support' services supposed to be that confusing, inconsistent and mute?