NHS | Sandra Jensen

There was a doctor in France who told me my post viral fatigue symptoms were due to a problem with my shoulder and sent me to a physiotherapist. There was a consultant lipidologist in Ireland I was referred to, but she refused to talk to me because I was hesitant about taking statins. A doctor in Canada who refused to look at the articles I’d collected on chronic tick-borne conditions and instead told me my problem was depression. The surgeon who almost had a temper tantrum during a consultation because I was feeling faint and needed fresh air. The doctor who neglected to tell me they had a specialist nurse in the practice for menopause and hormone issues, forcing me to go private. The doctor who didn’t like the sleep medication I was on and put me on another that is harder to get off, and has worse side effects. There was the surgeon who didn’t discharge me after an operation because he was too busy, and left me in the hands of a nurse who was unaware of what I needed to know in terms of my recovery. There was the doctor who insisted I had a thyroid disorder in spite of the fact blood tests were normal and gave me thyroxine which made my hair fall out.

The list goes on. But then there was the doctor at university in England who gently indicated my mouth and said, We’ll need to take care of that. I’d had a sore there for months because I was bulimic, stomach acid splitting open the tender skin. The doctor slid open a drawer and handed me an ointment that cleared it up in a few days, and without me asking referred me to an eating disorder specialist. There was a doctor in Ireland, my mother’s, who listened quietly to my endless story of ill health, looked at me and said, We’re going to get to the bottom of this and I knew he meant it. Sadly I couldn’t be his patient because I lived elsewhere.

I have good doctors here in Brighton. They do what they can, but they are not specialists, and they have little or no time, and it’s hard to actually get a face-to-face appointment. They do refer me to specialists but it takes a year or more to see anyone, unless it’s a cancer scare (and I’ve had a couple of those). I’m on the NHS list to see a gastroenterologist, a rheumatologist, a neurologist and a cardiologist.

In the end I gave up waiting for two of these, and thanks to the extraordinary generosity of so many who donated to my fundraiser, I’ve recently seen a private rheumatologist and a private neurologist.

I saw these doctors at two different private hospitals, all quiet and ease flowing the corridors. Free coffee and tea and biscuits, nice comfy chairs. Lots of nurses and other staff to assist with whatever is needed. A universe away from the usual hospitals I’ve had to go to.

The rheumatologist, Dr. Vijay Hajela, had the best bedside manner and I left the session feeling generally better about things. I went to him as I have most of the symptoms of Sjögren’s syndrome. He listened closely, read all the information I’d brought to him, and looked not only at the symptoms that were specific to his speciality, but the wider picture. Essentially he does not think I have primary , but possibly symptoms that are secondary to another autoimmune disorder or a ‘sicca’ syndrome. He’s ordered serum ACE, IgG4, Immunoglobulin profile and ENA bloods. He feels I have an issue with my central nervous system, hence the multi-organ/body symptoms. Possibly neurological inflammation/ sensitivity. He made a medication suggestion regarding this. He was quietly shocked that I hadn’t had a pancreatic scan yet given the diagnosis of severe pancreatic insufficiency in the summer (another specialist I’m still waiting to see), and pressed for this.

The neurologist, Dr. Dennis Chan, couldn’t have been more different in manner, but he wasn’t arrogant (unlike the private surgeon I saw last year), just very comprehensive, methodical and specific with his various investigations and questions. He took a full history and then poked me everywhere with a pin; told me to walk as if on a tightrope, and did all those finger to nose tests you see on TV. I felt a bit like I had an incredibly efficient robot doctor, but I knew I was in good hands!

Dr. Chan thinks I most likely have small fibre neuropathy, which is what I thought. He has ordered a variety of tests to exclude other possibilities, including an MRI of the spine. If these don’t show anything untoward, then I will need to see a peripheral neurology specialist. He also works for the NHS and was able to order the MRI on the NHS. Probably you will get an appointment in January, he said. Or maybe February, he added with a disappointed frown. I could hardly believe it – I knew I’d normally have to wait several months or more. Later, I realised I’d forgotten to ask him about further investigations regarding various ‘head’ symptoms I have (sense of pressure in the head, extreme tinnitus, etc), and so I emailed him to check. I promptly got a call from his secretary saying he’d be happy to order a brain MRI.

A few days later I get the appointment for both, January 9^th. I’m still in shock at the speed of this. I consider myself so very blessed to have been able to access these two doctors, for the choice I made, and for the support I’ve received to see them. I think about all those who haven’t been able to do what I have, who have to wait a year or more to see someone in a crowded and confusing hospital where you hear weeping and cries of pain. The exhausted nurses rushing about. They will be striking this month and I can understand why, and I wonder how it will be for those who have to visit an NHS hospital during that time.

And me. There’s more to do, and I’m still suffering physically, but knowing there are doctors like with Dr. Chan and Dr. Hajela on my case give me hope. I just wish they were easily available for everyone.

Previous blogs of mine on my physical situation:
44 Weeks
Still Suffering
ROCKS AND FLOWERS
Feeling Normal
The Real Story
The Unendurable, Part Two
The Unendurable
IT’S NOT COVID
More Things I Don’t Want To Talk About
On Being Invisible

I sit here, wondering how to write. What to write. My story feels endless, and therefore boring, I’m sure. 44 weeks, at least in pregnancy, is post-term, past due. In NHS terms, it’s how long it takes to see a specialist.

I know you all want me to be better, I want me to be better! And I am, in so many ways, thanks to your support. But I still have some ongoing – and some new – symptoms that severely affect the quality of my day-to-day life. At times I feel utterly desperate, and quite useless as there is so little I can do, for myself and for others. I glance over Facebook and the hundreds/thousands of stray animals in Bosnia needing help, help that I would normally be able to assist with, but no longer.

And I want to stop defining my life by my physical situation, and I know this is possible, even if the symptoms don’t go away. I just need help, solid, professional help.

My main issues are:

Burning feet and hands at night, waking me up constantly.

Blurred vision every few days or more, so I can’t read.

Excessive dry mouth and dry eyes.

Fatigue, of a new type, for the past 6 weeks. I am constantly exhausted. I get up, eat /shower, then I lie down for an hour or two. I get up, can manage an hour or two maximum doing a couple of things, and then I have to lie down again. By then its time for supper, and then for bed. My ‘useable’ hours are shorter than they’ve ever been other than last year when things were really bad.

My GP has done all they can and now I’ve been referred to three consultants: gastroenterology for my ‘severe pancreatic insufficiency’; a neurologist for the blurred vision and burning feet, the latter could be small fibre neuropathy and this can be progressive – moving up the body, and a rheumatologist for the dryness and exhaustion, to see if I have something called Sjogren’s Syndrome. This too can have severe complications, and needs – but rarely gets – early diagnosis.

So, I have been told it will take 44 weeks to see any of these specialists on the NHS. That the ‘normal’ wait time is in fact about a year. The NHS is broken, my GP tells me. Not comforting words.

I am getting used to physical suffering, more or less, but if there are things that can be prevented by early diagonsis, or at least actually diagnosed so I know what is going on and not spend my few available hours searching the internet or checking support groups for information, it would make a huge difference. Perhaps I could start thinking about other things than my health. Perhaps the bags under my eyes might lessen. It took me a while to have the courage finally post a photograph showing how I ‘really’ look…

I really don’t think I can’t wait 44 weeks.

So, I would like to make two private appointments – one for a neurologist, and one for a rheumatologist (my gastric symptoms are the least problematical at the moment). I am hoping if there are further investigations needed, they can refer me back to the NHS, as this often is possible.

The neurologist is Dr. Dennis Chan, I have chosen him on the recommendation of others who have seen him, but also because he is heading up a Long Covid cognitive study and as I essentially have a version of LC, this might work in my favour. I will also ask him about other neurological related symptoms I have.
His fee is £280.

The rheumatologist is Dr. Vijay Hajela, who comes *very* highly recommended by my doctor and others.
His fee is also £280.

I’m starting a new fundraiser, to try to cover some of this – the old one feels messy and not specific enough. Again, asking for help – financial help – is very difficult. I have no expectations. The tiniest amount helps. And if you have read this far, I’m deeply grateful.

Fundrazr link:
Please help me shorten the 44 week time to see a neurolgist and rheumatologist