Being persistent with the GP about my dementia symptoms has benefitted me

Everything started when I had a stroke.

I was a single mum of four, who returned to education as a mature student and became a primary school teacher. From there, I moved into a school for children with behavioural problems – I loved being able to help them. Then I became a deputy headteacher.

At the time of the stroke, I was an acting headteacher, covering for several colleagues who were off sick.

I recovered well from the stroke, but developed epilepsy. Despite this diagnosis, I carried on with life, including keeping my licence to drive my car.

Explaining to the GP something's wrong

Shortly after, I began to notice a series of changes. I became depressed. I had falls. I got mixed up. I struggled with speaking and missed words in sentences. I even stopped reading because that became too hard, and I had trouble with numbers.

All of this was followed by a mini-stroke. I went to see my GP, but they said they couldn’t find anything wrong with me. 

I kept repeating “I’m not right” to my doctor to try to get them to listen. You know how you feel inside.

I will admit, I have somewhat of a stubborn or persistent personality, so I kept going to see the GP until I eventually got an appointment with a consultant.

In the film below, Gina shares the importance of talking to your GP when you know something's not right:

Not long after my appointment with the consultant, I received a letter. Eventually, I received a diagnosis of vascular dementia.

Coming to terms with a dementia diagnosis

I was split. 50% of me knew what it was going to say, and 50% was in shock.

Oh my goodness, it couldn’t be dementia?

My world emptied out. It seemed so unfair. Had I not had a hard enough life with the two strokes? I had such a successful career, something that was mine that meant a lot to me because I come from a real working-class home.

After some time, I said to myself “You’re still here. There are people who are worse off.”

Getting support from Alzheimer’s Society

A little while after my diagnosis, Alzheimer’s Society phoned. My consultant had told them about me, and their Dementia Connect service got in touch. I was a bit shocked but appreciated their support.

Someone from Alzheimer's Society came around to visit. It was their Dementia Connect team who put me in touch with a memory choir, which then led to another choir.

Choir has given me so much joy!

The songs have so much variety and there are many that I remember from my youth. They're not so much 'pop' songs, but tracks I remember from the working men’s clubs I tended. I worked in them when I was in my 20s - the memories are so uplifting and positive.

Through the choir, I’ve met people who are different from me, which I enjoy. Together we’ve been out on trips – I've made some great friends.

It comes to something when you have to get dementia to find a social life!

What's next? 

This autumn, I’m really excited to be joining Alzheimer’s Society at the Labour Party’s annual conference in Liverpool.

I’ll be talking to Members of Parliament from across the country and telling them about the challenges I faced getting a dementia diagnosis.   

I know how difficult and frustrating it can be to wait a long time to get the correct diagnosis when you know something isn’t right.

I’m calling on the new Government to take action and increase diagnosis rates, and simply make the system easier to navigate. This is a vital change, so everyone living with dementia can access the support they need.

This article was first published in May 2022 and most recently updated in September 2022.