The prospect of more interaction with the NHS

 

It’s affecting my mental health!

I wrote a few weeks ago about the effects that caring for Viv has had on my mental health. One of the biggest problems is dealing with the huge behemoth that is our National Health Service; people who have few interactions with it may find it easy, but Viv has a medical record file that stands six feet tall or more, and that causes problems.

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I had one of my breakdowns this morning. About 8am I ran around the house, screaming; banged my head as hard as I could against the downstairs loo door; ran out into the garden, even though I was only wearing nightclothes at the time, swearing at the top of my voice (and it's a cold, grey December day) December, and then ended up sat on the stairs, weeping. 

The cause of this drama?

Viv had mentioned that her hearing in her left ear was worsening. She’s totally deaf in her right ear, due to a tumour, and it was loss of hearing that first identified that, back in 2014. The saga we have had since - an allegedly incorrect diagnosis, four operations, over a year in a wheelchair (during which time she was doubly incontinent), impact on memory and cognitive function, and probably a hundred NHS appointments and nearly as many private ones, the latter either in relation to the negligence case we are bringing in relation to her diagnosis, or - at the cost of nearly ten grand to us - for treatment that the NHS is unable to arrange because of the Covid pandemic. She’s seen more doctors in the last five years than most people see in a lifetime. The prospect of having to start all of this over again for another symptom was just too much for me.

How do we engage the NHS now, I wondered? Primary Care is broken, at least where we live. It took five months recently to have a phone discussion with our GP in relation to an administrative matter, even then it was clear to me then that he didn’t understand Viv’s issues - either his records were wrong or he hadn’t read them correctly. Just a call to the surgery to request an appointment about hearing is not a happy prospect: the phone lines usually respond with ‘number unobtainable’. 

Years ago there used to be walk-in ENT clinics at NHS hospitals, but a quick check online  reveals a wait time of 38 weeks or more at our local clinics, and it's not clear whether they expect a GP referral. We spoke to a pharmacist who suggested calling NHS 111; we’re reluctant to try that option, experience has shown that with Viv’s history being so complex the agent ends up just telling us to go to A&E. 

Viv had microsuction a couple of months ago so wax is unlikely to be the problem. In the short term she’s going to try some antihistamines, to see if they clear the insides of her ear; longer term we shall probably have to dig deep in our pockets to see someone privately, who can give her remaining hearing a good check over and provide definitive advice on problems she may face in the future. I didn’t go out on my doorstep and clap the NHS in April 2020, and I’m rather glad about that.

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I don’t doubt that many NHS staff are working extremely hard, but the organisation as a whole is failing Viv - and everyone. The sooner the politicians understand that the better.