I am deafblind and also physically impaired having a rare disorder called Alstrom syndrome. 

 

In 2009 I lost all feeling in my hands and fingers and ended up having an operation on my neck. After that, my parents had to look after me for a month before I could move back into my own flat.

 

Earlier this year, I had to have a bilateral hip operation. After a stay in intensive care I was moved to a single room to learn how to walk with a zimmer frame (I've been in a wheelchair for the last 11 nears)!  I get very breathless though so I've been told to still use my wheelchair on long walks and when travelling on the train and will probably use a stick inside soon.

 

Until care had been organised, I stayed in hospital. Since being discharged, I’ve had helpers three times a day to help me as I still can't bend.  They help me to wash and dry when getting up in the morning, to prepare and cook food for a hot meal at lunchtime and for teatime, help me to undress and get into bed at night.

 

Social services are providing the helpers, and it's an excellent service, but I shudder to think what would happen if it was taken away or I had to pay for it - neither me or my family have such funds.  My parents, who are both retired, and my three brothers, who all work and have families of their own, all help but they can only do so much!

 

Is this enough social care? No. It certainly is not. It meets my essential personal care needs but social care should be about so much more than personal care.

 

My main problems are communication and having a social life. If my hearing aids break down and needs new parts, or they need new batteries or need cleaning, I can't do this myself as my fingers aren't sensitive enough, I need someone to do it.  Often I can be several days without the use of my hearing aids meaning I can't listen to TV or music, never mind go out!

 

Whilst I can get around my flat with a minimum of difficulty in chronic pain, going outside or travelling anywhere is hopeless without help.  Someone needs to push the wheelchair. I need help getting in/out of a taxi or train, going to the shops, the bank, swimming and even attending meetings for my voluntary work.

 

My communication and social needs go unmet. These are just as important as my personal care needs but they are not recognised and need to be.