Dear Ed

Dear Ed

I have watched your programme on the social care system in tears not because of the stories you shared (although they are heartbreaking) but because this is truly only the tip of the iceberg. Carers are the backbone of this country holding the weight of the social care crisis upon them, yet how long can they continue to do so before they break, the whole system is hurting.

Whilst I really hope and pray your programme brings awareness to those in power I do feel that your journey cannot end here. To champion carers I ask you to please champion us all, so I invite you to come meet,visit, grab a cuppa with parent carers of children with disabilities like myself. Those that also care 24 hours a day with little respite or support and those who battle daily for our children to be seen worthy by our current government.

Let me introduce you to my son Daniel, he is a 7 year old bundle of love. He is cheeky, full of life and loves animals and his favourite person is Peter Wright the Yorkshire vet and I’m kind of ok with that. Yet to those in power he is a burden on society, when I ask for support I’m told priorities have to be made, when I ask for his basic needs to be met I’m told of a policy that doesn’t allow for it. This last year the word Covid could have be easily added to the dictionary with the definition “useful excuse “. I am not at all minimising the impact of the pandemic I like so many others have lost loved ones but when the word is used as an excuse I find it insulting and shameful. These issues were there before the pandemic and Covid has literally just been the light that has shined upon them, bringing them out of the shadows, yet it’s being used as an excuse to hide behind.

Parent carers are at the point of being broken, exhausted with the constant battling for services, the constant begging for support. Drained by the daily strain of caring, isolated in a world many cannot understand or even want to. Parents wanting to just be Mom and Dad instead of nurse, carer, physio and so much more. Our children have been forgotten, seen as not worthy in all areas including the Covid recovery plan. My son has been out of education since March of last year, his emotional health has been hit so hard by the isolation that he is now so scared that everyone is going to leave him that he panics if he cannot hear us. This panic has seen him hospitalised, panic attacks so severe that Drs nearly ventilated him before deciding to sedate him instead. Should this happen to any 7 year old?

My son is being judged by his disabilities and conditions rather than by his spirit and determination. Assuming disability means a lack of understanding, judging communication by the lack of words.

Personally I’m exhausted waiting on a GP appointment to finally seek help for the pain that I am in. I’ve had one full nights sleep since 2016 but I cannot find carers to take on my direct payment hours, the level of his complexities scary in comparison to the wage I can offer. My husband and I had been out of work since the beginning of pandemic, we are foster carers but shielding doesn’t allow this to happen. We are lost both physically, emotionally and financially.

Yet I’m faced by comments like “well you are loaded” it’s seems my child’s disability payment is vast in the eyes of others , oh and don’t forget our free van, what a lucky boy my son is, ignorance feeding the isolation.

Yet what happens if I break who will then care for my child? What if I get sick, this fear has eaten away at me for the last 18 months the little sleep I get broken by this anxiety. Even now I am scared to go anywhere for the fear of bringing the virus home to Daniel. We celebrated our 25th wedding anniversary at the beginning of this month at a McDonald’s takeaway, what rock an roll lives we lead.

Yet this situation hasn’t just arisen due to the pandemic, this as you highlighted in your programme is partly due to the reduction in local authorities budgets which has dramatically hit families like mine. It is also due to the lack of respect for the job of a carer both paid or unpaid, the dismissing of what is a skilled and demanding role. Also things like respite or home care is a not a priority to most and doesn’t win votes, well that’s until they need it of course.

Our children, are the forgotten ones, the pandemic began and our doors closed and services disappeared. Children waiting for equipment for far too long, wheelchairs to small yet the only way a child can travel. Isolating and heartbreaking.

The void of this pandemic has been filled by some incredible charities but is it their place to protect the vulnerable or should that be the role of our government?

I hope I am preaching to the converted, your empathy and compassion shown on this programme made me wish your were back in politics. Maybe we need more politicians and policy makers to go on a journey like yours.

All I ask is that this programme is not the end of your discovery into the world of social care, that you would consider coming and meeting with families like mine, with the charities advocating for us.

The government says “every child matters” help me and many others make sure our child matters.

Daniel matters.

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