I am so, so upset and baffled by the NHS and their postcode lottery. I accompanied my 28 year old daughter to her appointment with a neurologist last week, this is at a hospital 12 miles away, we have no neurologists at our local hospital. She is already under a neuro surgeon at the same hospital for a benign brain tumour.
It was her neuro surgeon who in December last year also diagnosed the possibility of her having FND, Functional Neurological Disorder and referred her to the neurologists.
The neurologist, who was really lovely, didn’t rush us and was so thoughtful, confirmed the diagnosis of FND. It’s quite complex, I have M.S that can be seen on an MRI, FND is purely based on the symptoms, they believe previous health traumas are the cause and her body and brain are just not communicating properly. The easiest way to compare it to M.S is that mine is a hardware issue and hers is the software.
The next bit is where I really just can’t get my head around. The treatment is a multi faceted team of physiotherapists, occupational therapists and psychotherapy, we thought great, there is a team of specialists out there. Then he dropped the bombshell, and I must say he was so apologetic and had fought for other patients only to be knocked back, WE ARE IN THE WRONG POSTCODE!!? We are only 12 miles away from the fucking hospital!!
He is reaching out to a psychotherapist at a local hospital close by, I’m really hoping that he can help her. Prior to all this she suffered chronic endometriosis from the age of 14. At the age of 21 we paid privately to see a gynaecologist as she was so gaslit by the G.Ps who just didn’t take her seriously. After the laparoscopy it transpired she was covered in endometriosis and had also been born with half a uterus, called a unicornuate uterus, the other half was what they called a rudimentary horn that continually caused her pain and constantly bled into her pelvis.
Over the years she’s had many operations, the final one so far was last year, this was a hysterectomy but she kept her ovaries. She was bleeding for 3 weeks every month and had no life. She had to fight for this as her original surgeon was hell bent on the fact she’d had no children, we explained that she was constantly knackered and simply wouldn’t be able to look after any, plus she’d had several miscarriages, she couldn’t even look after her little Frenchies due to constantly being unwell and exhausted, we had them stay with us.
Last year I sought out another consultant who was completely separate from her original one as it transpired others that we’d seen were hesitant and we now know that her original consultant was their immediate boss. Luckily the new consultant listened to her and sympathised that she had no life, the other surgeon had also left some awful slanderous comments on her notes that we should address but simply haven’t got the energy for, we currently have yet another battle on our hands. She suffered a post operation infection after two days, it happens, he stated that she couldn’t possibly have got it on his operating table and it must be an STD, talk about gaslighting on a whole new level!!
The new consultant was so, so lovely and offered to do the operation but wouldn’t do it privately as we didn’t have insurance and it was going to cost £9,000, he placed her on his NHS waiting list. The operation went well and a year later she is so much better for it and really doesn’t crave to have children, in fact they annoy her.
oh my God, I’ve just read how long I’ve waffled for. If anyone reads this to the end I appreciate your time. I’m lost and crying whilst I type this, I’d love a voucher from Mr Sunak for her to cash in for treatment, life is so FUCKING UNFAIR, and my heart hurts so much for her. I’m her mum and there to protect her and can’t do fuck all due to having the wrong fucking postcode!!?!