Dementia and the NHS – a personal experience.

I might have mentioned Mum’s persistent cough in previous posts. I can’t remember if I did or not but she has had a persistent, chesty cough which has proved resistant to medication. And so, yesterday, I took Mum to Kidderminster General Hospital for a chest x-ray. I say I took but that isn’t strictly true. Pat from the care home came with us and I’m very glad she did but more on that in a moment. 

I first met Pat when she and the care home manager “She’s the Boss” came to talk to my sister and I about Mum moving in to the home. At a very difficult time when smiles, let alone laughs, were few and far between, Pat and “StB” rummaged through Mum’s possessions, picking out items which would ease through the transition. In doing so, they made Fi and I laugh so much, they could have been Kidderminster’s answer to Eric and Ernie (no quips about short, fat hairy legs here, thank you very much). If the performance was designed to put us at our ease, it worked and we knew we were doing the right thing. It set the tone. Ever since, Pat – and so many of the staff – have been a constant source of smiles, laughter and support for us and, more importantly, for Mum. I can never thank them enough. 

But I digress. We arrived at the hospital early and made our way to the x-ray department, or “Imaging” as it is known there. Our initial progress was somewhat halting as I couldn’t control the brakes on Mum’s wheelchair and, boy, the car park is bumpy. Once inside we we were called through and we used the obligatory sanitising hand gel. Another straightforward act which made me realise yet again how even the simplest tasks are challenging for Mum these days. I led the way through the swing door and turned to ask the member of staff guiding us where I should go.

“If you let me get through, I’ll show you!”

That wasn’t the reaction I was expecting. I thought it important to move Mum forward as quickly as I could, to avoid blocking the doorway if nothing else, but obviously, I should have let said staff member go first.

Changing Mum into a surgical gown was an adventure, for Pat rather than me, but soon, we were in the imaging room itself. The radiographer told Mum what she had to do. Fine for a regular visitor, not fine for someone living with dementia. I told him that Mum has Alzheimer’s, expecting if not sympathy, then a little empathy. Instead, the referral form which I’d handed him was waved back at me.

“It doesn’t say anything about that on here.”

And it didn’t. And it should have, but his reaction was a little more robust than I’d expected. This isn’t turning into an NHS-bashing exercise. The radiographer tried his best but raising his voice, not in anger but to try to make himself understood, wasn’t a good idea. Mum has never liked a raised voice and these days, it’s entirely inappropriate. Eventually, Pat cajoled Mum into position, though encouraging her to hold her head still proved tricky. I retreated behind the glass screen with the man controlling the camera. By way of making conversation, I told him that Mum had herself been a radiographer in her younger days.

“So, you know all about this then don’t you,” he said to Mum.

That can only have confused her more. She wasn’t sure what was going on but was now being told she should know all about it. Did the radiographer have any idea what a diagnosis of dementia means?  It made me wonder whether ALL NHS staff should have some training in dementia care. No, that’s wrong. It didn’t make me wonder that at all. It made me convinced that they should and a little frustrated that they clearly haven’t, which is why I shall be sending a copy of this blog post to the Secretary of State for Health. 

The process continued and an x-ray was taken. The radiographer loaded the image on to a screen and studied it:

“That isn’t very good at all.”

My heart sunk and my mind raced off in a thoroughly unhelpful direction. What disturbing image had the x-ray revealed? Should I brace myself for bad news? No. What he actually meant was that Mum had moved and the image was blurred and therefore not very good. He decided to try again but said that if it didn’t work a second time, we’d have to leave it. Did that mean that because Mum’s dementia, she might be denied an examination? Fortunately, the second image was clearer. 

“What do you think?” I asked innocently.

“I’m not diagnostic,” he replied. “That job is done by people paid four times as much as me.”

Well, thank you for putting my mother and me at our ease. We have to wait another week to learn whether there’s anything which might explain why Mum can’t shift her cough. Luckily, the cough only troubles her intermittently and we were soon on our way back, when I’d mastered the breaks on that wheelchair of course. Come to think of it, training for me on driving the chair might be required. 

As I said, this isn’t a cheap shot against the NHS. Our healthcare system, as it stands at the moment, is one of the best things about Great Britain in my view but surely, given how many people are directly affected by dementia, shouldn’t we expect more from our National Health Service? Over to you, Mr Hunt. 

 

 

 

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4 Responses to Dementia and the NHS – a personal experience.

  1. Carrie says:

    What a horrible experience for your mum. I do agree with you and hope sending the blog will help. When I asked for a CT scan a few months ago for my mum to get a diagnosis the GP told me if he put dementia on the form they wouldn’t do it. So when we went I kept quiet and all went well. Did it go well because they didn’t know? The scan showed vascular dementia so her secret is out. We have generally had a good experience and the one time we didn’t was in a very busy eye department that did totally stress mum out and I thought she would start screaming in the middle of it but she just kept saying no. This did mean she couldn’t have the treatment that would have helped her see a bit better but I had to accept she couldn’t cope with it. I hope your mum is ok and that her cough gets better soon.

  2. Thanks Carrie. It shouldn’t be so difficult, should it? Wishing you and your Mum all the very best.

  3. dementedgirl says:

    Try Codeine Linctus – it’s available over the counter in the pharmacy, but not on the shelves. I had a persistent cough for an entire year which almost drove me to distraction – had had chest xrays, asthma tests, antibiotics, every single cough medicine going that year before a specialist said give that a try – it worked IMMEDIATELY. I know shouldn’t be recommended medicines really, but it helped SO much and really saved my skin!

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