David's story

David, who has had epilepsy since he was four years old, tells his story about his experiences of living in different hospitals and homes throughout the course of his life.

About Me!!

My name is David and I was born in 1950. I was inspired to tell my story to the Epilepsy Society after I stayed at their hospital in Chalfont St Peter in Buckinghamshire for one week when my health started to deteriorate. Unfortunately, due to curvature of the spine, I wasn’t able to have a head scan.

When I was about four years old I became ill with epilepsy and when I was about eight years old I went to live at Lingfield Hospital School, Surrey. I stayed there till I was eighteen and received all my schooling there.  At Junior School I was in the top set.

My experiences of care

I have lived in several hospitals and homes over the course of my life. Unfortunately, not all of my experiences have been good. There have been many occasions where me and my sister really didn’t like how I was treated; once I was even stolen from. There were also lots of times where I’ve moved between homes without any say in whether I wanted to move or not. My sister helped me to move to my current forever home.

At my current and forever home, four minutes from where my sister lives, I have my own bathroom which I have never had. I have my own ‘flatlet’ which has a bedroom and day area and a sink and a fridge.  I am very happy there as, before the coronavirus hit, I was taken out many times a week to have breakfast, brunch, lunch, shopping, bowling and going to the cinema. I also used to go to concerts to hear music from the 60’s and 70’s with my sister and her husband. I also go away for two nights once or twice a year and stay in a hotel with two carers and we go to a concert and eat out.  Last time we went to Southend and also went on the pier and dodgem cars!!

Looking back

One memory I have from other homes I have lived in is when I ran away and happened to come across the police station so I went in. There was no one at the desk and I saw a bottle of sherry under the counter so I had a little swig and then I was a bit cold so I put on an ordinary jacket hanging from a hook.  There was still no one was around so I started to walk back to the hospital. A police car pulled up and gave me a lift back.  One of the policemen said, ‘Youv’e got my jacket on!’  My sister reminds me of this story and it still makes me laugh.

I also got into a lorry and started the engine and on another occasion I broke a car headlamp with my fist!  My dad used to get cross about my misdemeanours.

Just after Phyllis, my step-mum, died my dad had told my sister that he was worried what would happen to me when he died but she said she would look after me.  She has done this.  After my dad and Phyllis died there were four of us children left from the two families. The other three agreed I could have anything I wanted out of the money they had inherited.  It was decided that, for the first time in my life, I would have my own furniture.  My sister and a carer took me out to choose lots of furniture and fittings from MFI.  I chose furniture with my favourite colour blue.  I also chose bedding and curtains to match along with cushions and also a new carpet. The manager at the home I was in at the time got my room painted and it had a gold picture rail!!

Forever home

I have been at my forever home for over eleven years now.  My dad would be so pleased and surprised to see how I am cared for.  I am asked what I would like to do and eat as well as what clothes I would like to wear. Very occasionally the ambulance has to be called if I have a very bad seizure and then my sister comes over and usually manages to stop me going to hospital, but sometimes I have to go. However, I feel am cared for better at the home where everyone knows me.

At the moment my epilepsy nurse at the hospital is reducing one of my drugs slowly so I will stop taking it completely. I am very fortunate that nurse Elaine is such a good nurse. My home is changing managers at the moment and I will miss her very much. The new manager is very nice too. Staff are really caring and they really look after me.

Me as a baby