Getting a diagnosis and some help!

I care for my 87 year old mother full time and have done for the last four years. She was under a neurologist because she was suffering intermittent seizures these are controlled by medication. In July 2023 during a routine appointment the neurologist commented on developing tremors and prescribed what I now know to be a Parkinsons drug. As we had moved house she discharged Mum from her clinic and told the GP to provide the medication but make a referral to a neurologist in our new area. Nothing happened except that the medication was duly added to her weekly dossett box and she took it as prescribed. About 7 weeks ago she had a fall and was admitted to hospital. the hospital doctors were horrified that she was on the medication without a formal diagnosis or tests they thought it may have contributed to the fall and took her off the medication (a gradual reduction) She has not had the medication at all for five weeks now. In that time the tremors have got much worse, what was mild vascular dementia seems to have got worse, she is experiencing a very dry mouth especially at night and in the last two days has become incontinent. the GP has sent a urine sample off in case this is a urine infection. A referral has been made to a neurologist but the waiting list is 66 weeks. She cant wait that long if it is Parkinsons she needs some help and medication and if it isn’t then that is great news. Is it possible to be assessed privately? We have some savings. I cannot get any sensible answers from the GP practice which is staffed by locums.

Hi Sam,

We’re sorry to hear about this ordeal. Of course no one in need should have to go through confusion like what you and your mum are experiencing. We would suggest you reach out to our free and confidential helpline, on 0808 800 0303. One of the many services the advisory team provides is connecting people with Parkinson’s and their carers to local support. They will be happy to assist.

You may also want to have a look at our website, as it contains loads of information relevant to your experience. A good general start would be: Information and support | Parkinson's UK.

We hope this helps, and we wish you and your mum the best.

Form Moderator

Hi Sam2,
Firstly, please take to heart what Jason has said, it is really the best way to deal with the situation in the circumstances.
Secondly, for the doctors at the hospital to take her off medication that a neurologist has prescribed is actually horrific.
Their knowledge of PD is in all probability very basic, and that is specifically why your mom went to a neurologist.
It is through their unwarranted interference that your mom has taken such a turn for the worse.
Why do you not ask them to prescribe the medication she was on before their inteference.
Can she not go back to her origional neuro?
Honestly that is tantamount to malpractice.
I take it that you live in the UK, and as such I have no idea how something like malpractice would “work”.
I do know in the USA and a number of other countries in Europe and Australia, a situation like this would be taken up immediately.

Hi @Sam2
Your mother can certainly see a neurologist privately. Getting her back to better health is, at this time, more important than taking action against the hospital she was in. Please ensure that the private neurologist she sees is a Movement Disorder Specialist.