6 Comments

Sorry… finally got chance to read this… firstly your visit to the hospital resonated. Add in the fact most hospitals don’t have the larger ‘changing places’ accessible toilets, and that they can be too small to accommodate Cerys, 2 carers, plus the equipment we use to transfer her to the toilet and I’m sure you can appreciate the challenge of a long wait.

With regards social care I always feel it’s made so complicated. Particularly if you try to access social care alongside CHC funding. Overloaded and overworked social workers make it a challenge for them and the families they are trying to help.

Always good to know your legal rights. It can also be useful to know the PCFs from social work England

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Thanks, Donna. I really appreciate you using up some of your precious time to contribute to this article. Geez, you've opened my eyes even more to how inaccessible accessible toilets can be!

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Sending gentle hugs from Washington DC, USA. I was a caregiver for my husband for 20 years, degenerative neuromuscular disease from Agent Orange exposure in Vietnam. Then additional diagnosis and battle of bone cancer also from AO. He was the one to teach me "pick your battles, be prepared to adjust, adapt, and above all else conserve your energy for the important things." All the best to you and your mom.

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Thanks, Lisa. Sending some big hugs right back. I remember you saying you looked after your husband but I hadn't appreciated the full extent of your journey. Sitting alongside you just to BE there. Yep, your husband's very wise. Thank you for sharing his words I think that could be something we could all have as a daily mantra. Big hugs

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Sending hugs to you and your Mum for a tough week. Thank you so much for sharing the video/transcript about the legal right to care; shocking as always, and empowering to know too. Jody x

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Thanks, Jody (aka Big Sis!) Much appreciated.

I'm SO relieved to have discovered this charity 'Access to Social Care', through Carers UK who are collaborating with them with an app call AccessAva. All because there's so many questions, and requests on their helpline about social care. Every day I read about people trying to coordinate care at home - the logistics, swings and roundabouts they endure and then the funding issues...Based on what I've explored and seen this could be a great resource for many people. I'm inspired by their approach of driving the volume of support to, in turn, build the data-volume & evidence for social change.

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