A bit of praise

Time to share some sunshine…

Posted on Jul 23, 2015 | 6 comments

Time to share some sunshine…

Four months ago, I could barely walk across my kitchen. One month ago, I marched, along with thousands of others, from the Bank of England to Parliament Square. A march of protest against austerity, but for me another protest too: against ill health with the physical proof that I could walk the length of the march. So, did I make it?

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Hello, Lambeth? I didn’t expect this to happen so soon.

Posted on Mar 6, 2015 | 0 comments

Hello, Lambeth? I didn’t expect this to happen so soon.

On Monday, I posted about our housing problems. By Wednesday, we were finally placed in the highest priority band for housing. Now it is Friday. Only five days later and here today, a perfect example of how families like ours are treated. We used to have a wonderful social worker named Beverly. She was a force of nature. My housing issue would never have been an issue. She would have handled it on our behalf. That’s how good social work is meant to work. As an example, Lambeth are meant to pay us “direct payments” towards our care worker twice a month. Over the course of the last two years, Lambeth didn’t pay us. Months later, after much chasing by us and Beverly, they would catch up with their payments, but initially we were not paid. For example: in just the second half of 2014, we were not paid anything in July, August or October of 2014. It wasn’t just us. Other families across Lambeth also experienced this. Every time this happened, we were not informed. I only found out because I checked our bank account – a bank account we can only use for these direct payments, so one we only use once a month to pay our care worker. We’d have to pull money from our own savings – and thank god we had some – to pay our care worker. Because the thing about employees is that they don’t keep working for free. I’m sure many other families like mine across the council lost their care workers over this. It could take weeks or longer to receive the correct payment. And then, the following month it would happen again. This happened many times – even more than the months I listed above – in 2014 and 2013. Here is an excerpt from one of many emails I wrote to Lambeth about this: I have made several requests for a full account of our direct payments for the past year. We were owed money and paid different amounts every month. I still have no idea what we were meant to be paid compared to what we were actually paid. It would be a simple thing to print this out and send it to us, especially given the on-going issues with payments. This is highly irresponsible. We have a severely disabled child who is not independent in any way. Meanwhile, I have been hospitalised with leukaemia for the past month. These payments are essential for our family to survive. Our care worker will quit if you do not sort this out. Beverly was our soldier. She made people account for these funding problems. She helped us like no one else did, when many within Lambeth completely ignored us. Then, she went on long-term sick leave. No one told us. So, all the while these housing and direct payment issues are happening – for several months – I’m calling her and emailing and getting no response. Finally, one day I phone Beverly and someone else in the social service’s team picks up her phone and tells me she is on long-term sick. That’s the only reason I found out. From that point on, only duty social workers answered my calls. And none of them did a single thing to help us. When I wrote in my housing post about literally begging for help, it was one of these duty social workers who ignored me. Then, on February 11, I received a letter from the manager of the team saying that they would be assigning us a new social worker in three weeks without any explanation or addressing any...

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Disabled and without a home: what happened next

Posted on Mar 5, 2015 | 0 comments

Disabled and without a home: what happened next

On Monday, I published a post about our housing situation. The media picked it up and it wasn’t long before the Allocations and Verifications Team Manager for Lambeth left me a voicemail message.  In it, she asked me to email some documents over to start the process to move us to the higher band. She said she’d follow up with an email explaining what was needed and where to send it. That day? No email. The next day? No email. Wednesday, again. No email. Because, that’s the way, isn’t it? That’s exactly the problem. We can talk about the lack of housing, government cuts, how little disabled housing exists – these are major issues – but if no one is willing to return your phone call you can’t get anywhere. Furthermore, it turns out she had known personally about our case since 2013 when our wonderful social worker at the time was fighting our corner. Because of this, and only this, I had access to her email address. So, I wrote her. I won’t reprint the email here, but suffice to say: it wasn’t friendly. She emailed me back, but only after Matthew Bennett, our local councillor, emailed her again as well. She did apologise. But I still feel there is still a lot to answer about how Lambeth have responded to our case. However, the short answer to the question of “what happened next” is that we are now, officially, moved into the top priority band. It is a sad state of affairs that my post had to be picked up by the media to make that happen – there are plenty of other people out there who are in a very similar and trying situation who will not have that opportunity. And, I want to make it clear – despite what the government would have people believe about disabled people – we did everything by the book. We filled out numerous applications and had medical assessments. We had consultants and therapists write letters on our behalf. None of those normal processes worked. So, I’m thankful. To all of you who shared my family’s struggles. To Matthew Bennett. To the media who pushed for our story to be heard. To Leonard Cheshire Disability who asked us to take part in their Home Truths report that initiated my post to begin with. To my friends and family and our wonderful care worker – who are the people who physically heave our delightful but disabled daughter up several flights of stairs when I can’t. And, especially my husband. Fathers are often lost in these conversations. There is much you don’t know about him that you can read here. He is May’s main carer. Guess it’s time to start bidding on...

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What you don’t know about my husband

Posted on Oct 13, 2014 | 4 comments

What you don’t know about my husband

I am the face of this blog. As such, people often tell me how much they admire my dedication to May. What people don’t realize is that my husband deserves much of the credit. My husband is May’s main caregiver. Her bather. Her chef. Her afternoon sleeping companion. She’s watched a full Tour de France. Twice. All because she spends so much time with him. “This is the song that proved May has better taste in music than you, Stacie,” is a typical aside in our conversation. And May does genuinely has a more eclectic taste in music than I do. Why? Because she spends so much time listening to it with her daddy. He is the one who spots her troubles first and identifies them correctly. He is the one the school turns to when I’m in the hospital. Or, her therapists. Or, her doctors. He is the one, the only one, who can read May’s favorite book Room on the Broom and receive such accolades as kicking legs and full body curls of giggles. And, then immediately send her off to sleep by settling her body just so on several pillows — and yes, she is catered to a bit like a princess every night just at this point. Yes, I do plenty of things for May. But, lost in all the talk about her is him and I don’t want anyone to ever think I do this on my own. Because during meetings with doctors or teachers or therapists, inevitably I feel all the questions and discussion points seem to fall my way. Sometimes, they ignore him altogether which is really distressing. Because, if they really knew May, they’d know it was her daddy that knows her best. Here’s a classic video of the two of them destroying the Canadian national anthem. May is two years old: What role does your child’s father have in their day?...

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My husband is literally giving the shirt off his back

Posted on Jul 31, 2014 | 0 comments

My husband is literally giving the shirt off his back

…and swapping it for an Anthony Nolan Trust one. And here he is! Wearing his brand new Anthony Nolan Trust racing top for the charity cycle he is doing in my name. It’s my last day of the first round of my new chemotherapy – one week on, three weeks off. To say I’m thrilled to see the back of this place for a few weeks is an understatement. The chemotherapy day unit is one of the most depressing holes I’ve had the pleasure of being made to wait three hours for a five minute treatment in. Or, spa treatment as I insist my doctor calls it. Which she does. Why not celebrate with me by donating to the charity that has played such a massive part in saving my life? The Anthony Nolan Trust found me a donor match for my bone marrow transplant. It is the only real “cure” for leukaemia and, despite my relapse, is still what my doctors are relying on as the platform to save my life. Here is the link to my husband’s donation page: Gareth Griffiths at Just Giving. As he says, “I’m a paunchy middle aged man who’s going to cycle 100 miles around London for the Anthony Nolan Trust. Please give money if you want to see me suffer as I haul my overweight frame about the UK’s capital.” And what’s more inspiring than that? Most people think that going on the bone marrow registry is painful and requires drilling into bones and other horrific tortures. But, it doesn’t. Getting tested is as simple as signing up on-line, spitting in a tube and sending it off. That’s it. And unless you’re some kind of freak and spitting in a tube causes you pain, I think you’ll be okay. If you are British and 16 -30, click here to save a life! Anthony Nolan Trust AND if you are over 30 – you can still donate! You just need to contact the British Bone Marrow...

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