The lack of care resources

We have all had family members who have needed our support through illnesses physically if they have had time off work etc.

Now imagine after a serious accident this family member now required 24 hour care with social services refusing to provide care support then just expected you to give up your employment. Becoming a full time carer for nothing (you’d receive Carers allowance £62.10 per week) which is inadequate if you are giving up a day job.

As a sufferer of Duchenne have fell victim to this feeling of this expectation; that Social Services somehow think my family should do certain amounts of my care for free. After years of fighting this has thankfully been lowered from them doing all of mine and my brother’s care, but are still expected to do say 25%.

There is a number of people who are going through this now having family members being forced into caring for their children as the only alternative would be to abandon their child into child services. Where social services would have no option to provide the care, this truly sickens me in our society.

I believe the thought process of Social Services and the government is wrong. It’s simply immoral to somehow suggest that as I’m their child; my physical disability is their responsibility to give up all their income and do 24 hour care.
As somebody that is disabled I have the right to say that if my family or anybody else’s family are expected to work for nothing, it is absolutely unacceptable. It is counterproductive to the childs health as in my experience I feel like a burden to my family, not out of abuse to be clear. I just feel guilty and often with depression it can make you feel like you’d be better off elsewhere this is something we in society still have a stigma around but I feel compelled to explain how this affects your mental health.

I am affecting their lives and hindering them to a degree an example would be when I had pneumonia in hospital needing 24 hour care my sister stayed with me she was awake all night caring for me and then went to school the next day – this is admirable and at the time really upset me that she felt she had to do this for me. No question about it this affected her education.

At one point I felt really low on the worst night when I was close to passing away, I had the thought of just giving up so my family could just be in a way ‘free’. However, the next day I felt really guilty and selfish and being brave enough to type this is really hard but I feel the government need to see the effects of their decisions. I realised I had to fight the illness for my family as they are willing to give up so much for me to be cared for. I owe everything to my family without them I don’t feel I would have had the confidence to stand up for disability rights and be a strong voice for those who are struggling right now. The main reason I am very political now.

People with disabilities such as myself who require intensive support deserve sufficient resources, and so do their families, nobody can argue with that. When these services are minimal or unavailable, that is a large-scale failure on our society’s part.

Parents – like you – need to hear, and believe, that it’s not a failure or shameful to ask for help, we need to feel safe about doing so. For our own sake, of course, and also because reaching out protects our kids as well as ourselves. I’m pretty sure disabled people who survived harrowing, abusive childhoods would much rather have been raised by supported and supportive parents, with the best support possible from the government. That is one of the reasons disabled adults like me want to offer our insights online – we want our children to have the best lives possible and children like us.

With articles coming out such as this one Unpaid Carers save £119 billion a year Unpaid Carers save £119 billion a year; that is a staggering amount and Carers’ contribution now far outstrips the total cost of the NHS (£98.8 billion) as standing from 2011. This is just disgusting, we need the government to provide carers, or a lot more monetary support. We in effect have a mini NHS essentially using family members for free, while disregarding their well-being and emotional strain.


Ryan Worth

North West Youth Labour Disability Officer.
Crewe & Nantwich Labour Disability Campaigns Officer.