My 2 year old son has an epilepsy syndrome similar to the condition your son Ivan had.
You have walked my path.
You have watched your beautiful boy have hundreds of seizures and turned to the doctors for help and seen how overwhelmed and worried they are.
You have had ‘that’ conversation with the doctor about the diagnosis and where the term ‘life-limiting’ was introduced.
You have cared for a child who is basically a big newborn. The medications. The tube feeding. The appointments.
You have lived with the shadow that your child will leave you one day.
Before I had my son I worked as a teacher, a career I intended to continue as I loved it, despite Gove’s constant meddling and absurd policies. My husband has a steady, normal job which pays a good wage. Not a ridiculous wage that we can live off alone, but a good wage.
After our boy was diagnosed we decided I would give up work to care for him; he is so complicated one of us had to. I do feel fortunate that we have been able to seek assistance in many ways to help care for my son. The NHS, the community professionals, the ambulances, the equipment, carers and benefits we use to pay our rent and bills. Which is why I’m writing this letter to you, to try and help protect this amazing support for families in situations like ours.
Since the election results have been announced and you have started your second term I have become very worried. I struggled to sleep the night it was clear you had won. I have one question swimming around my head; Where are these 12bn welfare cuts coming from? I used to think the media weren’t always right about things and I should take it with a pinch of salt. Then they got the new princess’ name spot on so I’m now not so sure.
If the rumours are true then 5 of the benefits we receive will be affected.
The most worrying is Disabled Living Allowance (DLA or Personal Independence Payments [PIP] for adults). The media has reported that it will change and become taxable, saving 1.5 billion pounds. What I find concerning, as DLA is for under 18s, is that you will be prepared to tax disabled children, one of our most vulnerable members of society. Carers Allowance may become means tested. I gave up a well-paid job to care for my son. Due to his complex care needs we’d have to pay for specialist care which would suck most of my wage as a full-time teacher. Not to mention the difficulty in getting time off for the numerous appointments.
I loved teaching and grieved for my career. It wasn’t an easy choice, but I had to do what was best for my child. Carers Allowance cushioned us and helped us devote the time to my son. If you change it to become means tested I’m fairly certain, due to my husband’s career, we’ll be over the threshold. As he doesn’t earn enough to support us entirely any reduction in our income will be felt hard.
The three other benefits discussed that we receive are Housing Benefit, Tax Credits and Child Benefit. All these little sources of money that come in help us to live, if they are reduced will we end up simply surviving? We want to spend what precious time we have with our son making memories and having experiences. Not worrying and stressing about our finances.
I have a lot of worried friends since you won the election.
As you know special needs parents already have more worries and stress in their lives. Now these vulnerable families are concerned about their futures. We’re not scroungers. Nobody chooses or wants to be sick. No parent wants to be told their child will not develop and will die, that between now and that day they will suffer and deteriorate. However, we’ve been told that and you were told that once too. Please Mr Cameron, when you are in the meetings discussing the welfare cuts, please remember your life with Ivan.
Remember the other families you met when Ivan was alive. On the hospital ward. In the Child Development Centre. At school. At the hospice.
Remember that most families in Britain are not as affluent as you are.
Remember that society has a duty to care for its weakest members.
Remember that no one wants this life and that you have the power to make it a little bit easier, or much, much harder.