My Challenges

My Conditions

I have a number of really rare conditions. So rare that most doctors treating me have not come across anyone like me. My care is spread out because there isn’t one hospital that treats all my conditions in one place.

Housing Challenges

oIn short, my home is not suitable for my needs.

My wheelchair doesn't fit through the internal doorways

On days where I'm well enough to be moved, my carers push me into the bathroom on an office chair - on days when I'm not, I am unable to wash

I do not have a walk in shower, I have a shower-over-bath set up which is very challenging to access

My carers have to share/sleep in my lounge

I live in one room in my house - my bedroom

There is no space for a chair in my bedroom so I have to spend most of my time in bed

I cannot access my kitchen so even if I wanted to be independent in feeding myself, I can't

My equipment takes up all available space in my flat

I have no designated parking for my adapted transport

People park across the entrance to my building, on those days, I cannot leave the house because my wheelchair doesn't fit past them

Legal Action

I recently had a judicial review of a my case against the Essex Integrated Care Board (ICB) due to failings in my care.

It covers:

Flexibility on my personal care budget
Hire of office space due to space restrictions on my flat (see above!)
Funding for nursing care
Funding of my wheelchair
Transport and accommodation requirements for medical appointments

You can read the court Judgement HERE

I am currently appealing the decision