My progress update

Over the last few weeks I have been telling you about the things that I have been fighting for, so this might be a good opportunity to bring you up to date about the progress that has been made as a result of my emails and pushing at closed doors:

– one of my major complaints surrounded our lack of overnight short breaks since the end of February this year, so 4 months ago now. We have now been told this week, that there are 2 facilities, within a hour’s drive away, that will have space for Joshua from September. I have been invited to make contact with them both and to look around and choose one to pursue. That is great and I am very keen to look around. In the meantime, our Direct Payments are to be increased over the summer, temporarily, to allow us to purchase more care from both of our carers/personal assistants

– you may recall that I have been fighting for a decent incontinence product that is fit for purpose for a growing boy. On Monday this week, the incontinence nurse met with the Tena rep and we are all going to meet on 2 July for Joshua’s needs to be formally assessed. Apparently it is not as simple as listening to his mum, who reports that the bed is wet several times a week, he needs a formal assessment before he can receive an alternative pad

– I have begun the process for appealing against Joshua’s award of lower rate mobility Disability Living Allowance. It seems that the Department of Work and Pensions will rarely award higher rate, as a cost saving exercise as few of us worn-down parents will appeal. Well this particular parent is ready to fight their decision!

– I complained about being ‘out of sight, out of mind’ since we left rehabilitation in hospital: we received the long-awaited report this Tuesday and we are going back on Monday for Joshua’s day splint to be reviewed, so we appear to be back on their radar.

– Joshua appears to be having seizures overnight which are disturbing his, and my, sleep patterns. His consultant has referred him for an ambulatory EEG at home, to see if we can understand what is going on at night inside his brain. I was warned that there would be a 3-4 week wait for this piece of specialised equipment. Armed with information from the last couple of sleepless nights, our epilepsy nurse has kindly intervened to chase the referral up and we should now get an appointment in the next 2 weeks.

– Joshua is going on his first school residential trip today/tomorrow  and so my husband and I are off out tonight to the cinema to watch dinosaurs for our rare night out! Joshua has had a difficult week with seizures and a lack of sleep, so I am really hoping all is calm tonight so that 999/ambulance does not need to be called to spoil everyone’s fun. I really hope that he stays awake and seizure-free so that he can participate fully with the other 7 children and 8 members of school staff. I have baked some lemon drizzle cake and shortbread for them to enjoy as a midnight feast!

So I think you can see that some real progress has been made over the life-span of this blog, which has made all of the stroppy emails and cross phone calls feel worthwhile. I am not a natural complainer but I am prepared to fight for the best that our son deserves, so bring it on!

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