An update on my case: I posted in '19 that I’d given up on NHS and gone back to private care at my local Nuffield. Much has happened since then!
When the first lockdown started, the Nuffield clinic that I’d been attending closed down. Unfortunately for me, that coincided with my needing an increase in my meds. I tried to contact my neuro through the Nuffield, but messages were not passed on to him.
Retrospectively, I should have tried to contact him through his NHS secretary, but my NHS contact was my local Parkinson’s Nurse and so I tried her first, but had the usual difficulty in getting her to return my calls. When I did eventually get hold of her, she told me that she could neither advise me or write prescriptions, because I saw a neurologist at the Nuffield rather than my nearest NHS hospital. Her rationale was that her contract was with the NHS authority and she could only assist patients being treated within that authority. I decided at that point to avoid contacting her ever again, wherever I ended up getting treatment, because all she ever did was waste my time.
Meanwhile, my condition was deteriorating and I went through several weeks of hell. That was the low point. Eventually, I made contact with my neurologist through his NHS secretary and got my meds sorted out.
Since then my treatment has improved by around 500%. My neurologist got me put on his NHS list. All my appointments with him have been virtual, but that has not mattered. At the beginning of last year he referred me to Bristol Brain Centre for DBS. Bristol offered me the opportunity to be part of a trial of a new style of DBS and I had the operation in March. It was only turned on last week and it has to be fine tuned, but I’m already using only 60% of the drugs I was on before, and experiencing far less dyskinesia.
So it is a happy ending for me. Ironically, my treatment is still not completely NHS, since the trial I’m taking part in is charity funded.
Great news Jane_L that it worked out in the end but it’s frustrating you had to go through all that. My current NHS neurologist is great, at the moment whilst we’re finding the right meds I’m getting an appointment every 3 months but I had to fight hard to get to this position. I had to go private for diagnosis , then had a nightmare getting the first referral to him. I don’t know how you found it Jane, but any time I spent chasing and hitting the brick wall of unresponsive or unhelpful staff as my stress levels went up so did my symptoms. It’s good to see how you’ve managed to fight for and get decent treatment.
By the way, well done getting on that trial, how great having DBS without the battery pack in your chest, I think it’s a big improvement and hopefully will be available to us all in a few years. I keep saying to my neurologist about DBS but he saying it’s way too soon and we need try all the meds etc, I’m like drill away!
An update on the DBS. It has made a big difference to my quality of life overall, though there has been nothing spectacular either.
My medication has almost halved, but I am still on a fairly substantial dose of levodopa (in stalevo). On an average day I have several more hours without the symptoms of wearing off or dyskinesia, but I still do get some wearing off and dyskinesia. I still get the occasional bad day, when my meds don’t seem to be working and I spend a substantial part of the day either ‘worn off’ or writhing around with dyskinesia. What has surprised me is that my balance has improved enormously. I’d read that DBS does not affect balance, so this was a pleasant surprise. As a result I’ve been able to do housework again. The extra hours without symptoms have also allowed me to have a day out, and I’m looking forward to some relatives of my husband visiting us from Canada later this summer.