Real stories

Convincing local NHS decision-makers to prioritise dementia

One way to influence change is by speaking to MPs. But there are other ways to help make dementia a priority within the health system. 

I’ve been contacting local decision-makers in Kent to help improve health care for people with dementia in my area.

New role 

I worked in the NHS for over 40 years and was a lecturer for more than 20 years, teaching undergraduate nurses and doctors. 

I had to step back from my role in education after being diagnosed with Lewy body dementia.

I’m now part of several groups trying to make a difference for people with the condition. 

I want to have clarity on the health and social care strategy for people with dementia in my area, and I want to know how they have their voice heard. 

I also want to know how future professionals are educated about dementia, people like nurses but also the police.

Local decisions 

I’m approaching my local integrated care board (ICB) to try and find answers to these questions, and I encourage others to do the same.

ICBs were set up in 2022 across England and are responsible for managing the local NHS budget and meeting local health needs. 

They’re meant to make care more joined up by bringing services together.

After working in the health service for over 40 years, I believe we need to speak to those who control the finances and make decisions if we’re going to see any change in dementia care. 

Work together

Even though members of the public can’t take part in ICB meetings, we can ask to attend as observers or see a record of a meeting. 

We can ask board members about how local people with dementia are being cared for. 

I think it’s beneficial for people to engage with not just their MPs, but people on ICBs, governors of local health trusts and councillors.

They actually decide where the money is going. 

It’s not about being aggressive or demanding, it’s about working with these decision-makers. 

You could also ask who the dementia champion is at your GP practice, council or NHS trust. 

That way, you will know who to speak to. If there isn’t one, ask them why.

Don’t give up

It can be disheartening if you don’t hear back from local representatives, or if they don’t give you the answer you expected.

Don’t give up, just keep going. You are an expert by experience and should be listened to.

Have a strategy for what it is you want to achieve when you’re asking questions.

The beauty of doing this online or via email is that it’s free, so you can ask as many questions as you like!

Ask the question again or be more specific if you get fobbed off.