Scott Mitchell: 'Why the Fix Dementia Care campaign is so important to Barbara and me'

On Monday 2 September, Alzheimer’s Society Ambassadors Dame Barbara Windsor and Scott Mitchell handed our public letter in to No.10, calling for urgent action on dementia care. Hear from Scott about why people with dementia can’t wait any longer for change.

When we first spoke about the Fix Dementia Care campaign, Barbara was upset to hear about the lack of care available to other people living with dementia and wanted to do whatever she could to help them.

Now her condition has progressed since we first had those conversations, and her short-term memory has got worse – for example, I needed to tell her about six times on the way to Downing Street where we were going and what we were doing.

But when I explain it to her, she still remembers those chats and wants to do something about it.

Helping people is in her nature, and it’s still something that is so important to her.

One thing we know about people with dementia is that they are still emotionally connected to the things and people they care about, even if they might forget the details. Her drive to help people is still in her heart, it’s clear from the way she reacted to me talking about the campaign.

Dame Barbara and Scott Mitchell at No 10

At No. 10 with Nimisha and Namrata, the campaigners who joined us at the hand-in

Calling on the Prime Minister for change

We met Boris Johnson in the Downing Street garden. Barbara knew him from before, when he was the Mayor of London, and she worked with him as his Street Party Ambassador – something that was focused on bringing communities together.

Jeremy Hughes and Sally Copley from Alzheimer’s Society joined us as well. We spoke with the Prime Minister and a few of his aides for about 40 minutes, and we really laid out the urgency of the matter, and the unfairness that people with dementia face within the social care system.

We know that we are lucky to be in a privileged situation. But I can’t imagine what it is like for people who must struggle with the cost of care, as well as dealing with the symptoms of this disease.  

A positive chance to make our case

Going into the meeting we really wanted Boris Johnson to understand the extent of the care crisis. When he became Prime Minister he said that fixing social care was a big priority and we were keen to hold him to his word.

It was a positive meeting. I felt that the Prime Minister was very engaged in our conversation and he seemed sympathetic to what we were saying.

We wanted to make sure the voices of people affected by dementia will be heard when the Prime Minister agrees his plans for care reform. Too many times people with dementia have heard promises of extra support but then been let down. 

We want this time to be different and I believe that if we continue to speak up we can convince the Prime Minister to give dementia the priority it needs and deserves.  

Proud of our campaign

The fact that we were able to meet the Prime Minister during this busy period – and that dementia care is out there as such an important issue on the political agenda – is something that Alzheimer’s Society should be proud of.

The Fix Dementia Care campaign has been running since 2016, so it’s not a new campaign – it shows how much work has gone into this. It’s amazing to be told that mine and Barbara’s involvement has brought more awareness to this matter. It helps us to get some positivity out of a horrible situation. 

There are people who are having to give up their jobs, or sell their family homes, to afford care for their loved ones – that just can’t continue to happen. People who have paid into the system all their lives shouldn’t just be abandoned, because they were unfortunate enough to develop dementia. 

Not someone else’s problem

It was lovely to meet Nimisha and Namrata, the campaigners who came with us to the hand-in at No. 10. 

It’s always wonderful to meet people going through the same thing. There’s an unsaid, common bond between us. Only people affected by dementia truly understand it. However, hearing more about what their family is experiencing when it comes to care support, has spurred us on even more to support people affected by the dementia care crisis.

Unfortunately, more and more people will develop dementia in the future - at some point, this disease will probably affect everyone’s life in some way. That’s why dementia care is not someone else’s problem – it’s something we all need to care about, and work towards fixing.

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Well done Scott and Barbara for being so honest in speaking out about how difficult things can be. By doing so it highlights the struggle of daily life when living with dementia. My mum has it and yet looks so well but is due to the care family is giving. Doing memory walk in October and its an amazing emotional day. We all need to keep going. We salute all who take part. x

Dear Scott, I hope you're both doing ok? Were on your journey, four years in. My Mother Diana 80yrs has Alzheimer's & LBD.
Thinking of you both & sending much love. Thank you for sharing your story. Here's to a Dementia free future xx

My daughter is currently doing the Thames Path 100 k walk for Alzheimer’s society... very proud of her x

With untold thousands nationwide being forced to raise equity on their homes - or sell outright to pay for a family member's advanced dementia healthcare - I can barely believe there were but 3 responses to this feature. My own London Borough of Hounslow is fighting tooth and nail to avoid paying out any appropriate continuing care assistance tho' government monies have been allocated for those meeting the assessment criteria. I have been a 24/7 carer for my elderly spouse for three years and our life savings are now depleted, my own health is destroyed, and for six months Hounslow CCG have been withholding a health budget that we are now legally entitled to. I find their behaviour and delaying tactics completely unethical.

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