Controversial? hmm, I couldn’t think what else to call this post, I decided on ‘controversial’ as you may disagree with the points I put forward here.

1. Hierarchy of unpaid carers.

My experience of the hierarchy of unpaid carers and how we are perceived. I attended a Regional Partnership Board meeting as an unpaid carers representative (please look up what Regional Partnership Boards are, I sit on one and I’m still unsure of exactly what they do 🤔)

We had been played voice notes from carers of young children and experiences of maternity and aftercare of young children.

A fellow unpaid carer and myself were sat with the chief exec of health board and chair of RPB. We both talked about our experiences of unpaid care and who we care for. The other unpaid carer has a child who had cancer and through treatment ended up with Autism.

I told my experience of caring for my loved one who has mental health diagnoses, autism and adhd.

At the end of this discussion, the chief exec of the health board turned to my fellow unpaid carer, rubbed her arm and said ‘ oh that must be so hard for you, I admire your strength so much! Thank you for sharing that with us’. Er hello 👋 , over here, what about admiring me and acknowledging how hard it is for me? I’m two seats away from you. Where’s my arm rub? 😆

I’m sure you’re aware, talking about your experiences can be traumatising, and as carers we often have to talk about them again and again. An acknowledgement would’ve been nice.

2. Cancer versus mental health

its pretty hard to beat the cancer card when you’re an unpaid carer. I get it. Cancer is a scary thing, as are other life limiting conditions. Someone can easily post about cancer diagnosis, caring for someone on social media, and will get hundreds of likes, sympathetic comments, donations.

But how does that work for other life limiting or life threatening conditions such as Mental health, Adhd, Autism? These are serious conditions that can end a life instantly. (IFYKYK)

Yet if you post or talk about anything like this in public or on social media it won’t illicit the same response. Unless someone has died. Then you will.

3. Accident and Emergency units

This is possibly a very controversial stance. My experience of A and E units is shocking, not just for me and my loved one and our experiences but other patients I’ve observed and helped whilst being there. Again I get it, they’re overworked, 12 hour shifts 3 or 4 days a week, that can make anyone ignore a beeping life saving infusion for 30 minutes , or stop you from remembering you placed a vulnerable older man in a wheelchair semi naked with weeping sores on his back for a couple of hours. Its ok though as the people with other patients can give him a blanket, make him warmer. Treat him with dignity. It might make them forget to clear up the full vomit dishes and again leave it to others to provide new ones for patients. I mean 4 x 12 hour shifts with 3 breaks. 48 hours. Get to go home afterwards.

I wish.

I work 115 hours a week, with few breaks. From the moment I wake up to the moment I fall asleep exhausted. I know other unpaid carers who care non stop for 5 people, they get no breaks. There are many who are medical experts caring for disabled children, adults caring 24/7 at breaking point.

Don’t get me wrong, I’ve met some great staff in the nhs, on different wards, x ray, mri, etc. But the lack of care in A and E unit is terrible.

4. Respite

Respite, what exactly is that?

Enough said. For now.