It’s been a lovely whirlwind of (very kind) congratulatory messages following the announcement of my MBE in the King’s Birthday Honours list 2025.
Knowing about my honour a few weeks before the announcement made it a very hard secret to keep, and yet at the same time a wonderful one to think about in the (rare!) quiet moments in my hectic life.
Those who know me won’t be surprised that I cried when the letter arrived, an emotional mix of being so humbled to be recognised in this way but also because my thoughts immediately turned to my dad. How proud he would have been to come to the investiture in his smartest suit, polished shoes and putting his very best foot forwards – another milestone I can add to the (very long) list of opportunities dad will never have because of dementia.
Where it all began
When dad died, those who’ve followed my blog from the beginning will recall I wrote about my quest to:
“Provide support and advice to those faced with similar situations, inform and educate the wider population, promote debate, and campaign for improvements in dementia care and changes to the care system.”
I had absolutely no idea it would lead onto all the work I’ve been so lucky to do since I wrote that blog on 20 May 2012 – the articles, presentations, speeches, panel discussions, meetings, training and mentoring sessions, media interviews, films, podcasts, webinars, blogs and so much more.
I’ve worked with some wonderful organisations and people, and to every one I extend my gratitude for the opportunities. So often it’s been the ‘big’ things I’ve done that have made the headlines, but of all of the messages I’ve had since my MBE announcement it’s ones like Sylvia’s that have been the most emotional for me.
Very many congratulations on your well deserved MBE. You were a life saver to me when my late mum was diagnosed with dementia. Llongyfarchiadau i ti.
— Sylvia Penny (@pennysfromWales) June 14, 2025
My dad’s legacy and what I’ve learnt from people living with dementia
I’ve lived and breathed the legacy that I was so determined my dad’s life and death with dementia would have. I never wanted everything we went through to be in vain, it had to make a difference, change things for others, and I hope that it has and will continue to do so.
Of course because dad died in 2012, and not withstanding the changes I see in my mum now, my learning for the most part in the last 13 years has come from meeting numerous people living with dementia and their families/carers. I never underestimate what I’ve learnt from each person I’ve been to privileged to hear from over those years, and indeed the many people for whom words were limited but who taught me in other ways so much about what they were thinking, feeling and experiencing with their dementia.
What next?
So many people with dementia and their families do not have a voice and are not able to access timely support and advice. My passions for everything from diagnosis and post-diagnostic support through to end-of-life care remain undimmed, and I hope the spotlight of an MBE will enable me to do further good in these areas in the future.
Whilst I call it my work, it’s so much more than that – perhaps you’d call it a vocation; I’d certainly call it an immense passion. It is so often the light in the darkness for me, which isn’t something always associated with dementia, but the chance every day to make a difference for someone, somewhere, who I may never meet but who I can help in some (often small) way is the very greatest honour.
To my dad and everyone who has supported me, thank you
When I realised the timing of the King’s Birthday Honours list 2025 announcement, the day before Father’s Day, it felt like the most perfect timing. Whilst I am and will always be immensely grateful for the personal recognition of this award, this isn’t just for me; it’s for my dad, the first person to teach me about dementia. It’s also for everyone I’ve been lucky enough to know and work with, many of whom live with dementia or care for someone who is. Your support means the world to me, and together we will continue to try and improve the experience of living with dementia for everyone.
Until next time…
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