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Dom Hyams Guest Blog: Independent Living

  • Posted on Jan 30, 2020

Last year, I took a giant leap into the unknown with my partner Sophie, as we decided to move out of Hertfordshire to Surrey and take our first step onto the property ladder, whilst being near Sophie’s family, and my sister down in Brighton who had just had a baby.

Getting Ready

I was quite clueless as to the process of moving from one area to another, and spent a long time asking others about how care packages transfer, what assistance there may be with adaptations and how I transfer medical services, to name just a few. What surprised me was how incredibly difficult it was to find anyone that had that knowledge, but more specifically, finding anyone that was confident that it would be straightforward – it seemed it would be a giant leap into the unknown. On one occasion, I had a meeting with the head of accessible housing for Hertfordshire County Council and explained my wish to move, and incredibly her response was to suggest that it might be ‘easier’ if I just stay where I was, and get a job locally (instead of in central London). I’m not often lost for words, but that came close!

Suddenly I was struck by how difficult it is to find the information I needed, but more broadly, how I would need to summon the courage to make the move! It was clear that due to the lack of consistency in approach from one local authority to another, any move was going to be a leap into the unknown.

As I am sure most in the BBS community can vouch for, a challenge is not something that we easily shy away from – and so after a few months, much Zoopla scrolling, and numerous viewings, we found a property that met our reasonably specific set of needs and decided to take the plunge. We handed in our notice, setting the balls in motion for moving.

Fast forward 12 months, and we are all moved in, settled, and very happy. That doesn’t mean it was all completely plain sailing though. Sorting the care aspects was a challenge, and definitely required constant communication and persistence with Croydon City Council to educate them about my care needs, what situation I was coming from, and what support I was going to need from them. Getting adaptions done was also another slightly grey-hair-inducing activity, but aside from saying that we’ve experienced our fair share of cowboy builders over the past year – it’s probably a story for another time!

When I think about ‘independent living’, it usually conjures up images of the exact opposite to me, probably because on a day-to-day basis, I am not often analysing my own independence. I’m extremely lucky to be set up in a very stable environment, my care needs are met, I am very content, social, and I’m able to go into London every day to work.

Looking Back

My experience with moving made me acutely aware how there are what appears to be “glass walls” around me and many others that have additional needs to live independently, with the mixed messages, and lack of accessible housing resulting in many believing that moving to maintain or improve independence isn’t possible although there are now organisations like Habitag and Abode Impact looking at the difficulties faced by those looking for accessible housing. Processes definitely need to become more transparent and more consistent from one authority to another.

In the meantime – I encourage you to all to fight for the independence you want and need, even if that means heading into the unknown, and having to educate others along the way.

Please Note: Any recommended Suppliers referred to are in relation to Dom’s personal experience and are not endorsed by the Brittle Bone Society.

We are also looking at ingathering people’s experiences of living with OI, if you haven’t already, you can find our Independent Living Survey here:

 It doesn’t matter if you have mild OI or severe OI we would like to hear from you!