By Amy Jonson

I am a full-time carer for my beautiful 9-year-old son who has Spastic Quad Cerebral Palsy. I also look after my elderly mum when her illness means she has trouble looking after herself. I am proud of who I am, what I do and I have a name, I am not just “mum.”  When I am dealing with professionals in the health sector I feel I am designated a lesser person by the use of that noun than those in the professional care sector whose work mirrors mine and who are treated accordingly.

Caring is a full-time and extremely stressful job that we get paid peanuts for. Support is very hard to get and I feel there is no understanding of how parents and carers feel day to day by a proportion of the professional health care sector. We do get tired out, we do get very down and we do get ill, but we have to carry on because there is no backup plan. How many times have you been told that you are being unreasonable by a professional? How many times have you been told there’s no help available? How many times have you just given up asking?

Knowledge is power as the old saying goes and If that timeless saying is true then surely professionals working directly with parents and carers should make sure they are familiar with differing disabilities and conditions?  Assess each family unit on its own merit?  Many times I have heard “Oh so and so down the road manages ok”. Well, breaking news, we all have different circumstances and lives. I am told I should do this and that with my son. With physio, I explain two pairs of hands are required because he cannot sit or stand but I am argued with. Until of course I ask that professional to demonstrate, which of course they can’t because they need another person. Disability and care are not black and white, its facets can’t all be learned from textbooks.

As for coping itself I find this a very grey area. I was once told by a social worker that I was marked down as “Coping ok” because my flat is clean and tidy as are myself and my son (so that was why help wasn’t forthcoming) Did it ever cross his mind that my apparent OCD WAS my way of coping? No, it did not. We all cope in different ways but it seems there is a particular criterion that is adhered to by support organisations. Why can’t we just be listened to and believed? Eyes and minds open, please.

I think professionals, especially social workers should (as part of their training)  spend time with the family of someone who is disabled or ill to see what happens in daily life. Reality cannot be learned in an educational setting. So many social workers and indeed other professionals haven’t the first clue what physically looking after someone with a disability entails. This causes friction because parents and carers are so often told they are overreacting by professionals who have no understanding or empathy. This results in labels being put on parents and carers, such as “difficult.” 

It is my opinion that the rot starts at the top. Our Government’s attitude toward the disabled and carers is sick, dismissive, and at times bordering on cruelty. Departments that are PAID to give YOU support just aren’t doing it. In fact, they are encouraged not to. Attitudes if left unchanged can be adopted and unchallenged right down to the healthcare system and onto us.

We are told we have human rights, but until councils are forced to adhere to these and put the right support in place then these human rights may as well be written on toilet paper. I think this is one of the fundamental issues which affect relationships between professionals, parents, and carers. I feel very much it’s a case of us and them because we are powerless to actually change things and professionals know this. This means that councils literally get away with murder. There needs to be more focus on changing the mindsets of those who design the policies as well as those who carry them out.

It is very hard as a parent or carer to keep fighting when it’s a constant uphill battle. I always say it’s not caring for my son and mother that’s difficult.. its everything else! When professionals tell me that ” my name is well known in the office” or in “red pen on the notice board” and other such remarks this makes me feel insecure and frankly annoyed. Sometimes it just gets too much. Sometimes we don’t want to engage with anyone, it’s tiring.

Asking for help seems to be a taboo subject. As a parent, I feel there is too much focus by social services on my parenting ability rather than what is actually best for my child. I have experienced many different reactions towards me by social workers including bullying, threatening tactics to total indifference. Managers ignore you and complaints are not acknowledged. In fairness, not all professionals are this way and indeed I have met some who have identified with me and been great, but I find the majority do not which is unfortunate.

Look, professionals, if you are reading this please understand we are not being purposely obtuse. We are not trying to stop you from doing your job. Please remember we are the experts in who we care about, we are not just names on paper, we have feelings and opinions. Work with us, learn from us, life is vast and experience is found everywhere. Please give us the same respect as we give you. It will make things so much easier for everyone.

If you wish to write for the union please email: dan.white@disabilityunion.co.uk