How to get a referral?


I’m new to the forum and am rapidly reaching the end of my tether! My partner has Parkinson’s and was diagnosed around three years ago - let’s call him K. (He’s happy for me to write on his behalf.)

I’ve had misgivings about his consultant from his first appointment. To cut a long story short:
Dr X prescribed medication which was initially effective. K’s symptoms are now progressing at a rate of knots - I had to go away for a couple of weeks earlier in the year and was shocked at the deterioration in just a fortnight.

Dr X said the he had Parkinson’s - no surprise to us - and said an appointment would be made for a brain scan. He was never sent an appointment letter - when he mentioned this at his next appointment, the consultant said ‘what’s the point? I know what you’ve got’.

Dr X then pronounced that he had slow advancing Parkinson’s and told him how lucky he is. I have no idea what this is based on. No tests have been carried out. He was told that he wouldn’t get any worse. Clearly, this is nonsense.

Now, K thought it would be a good idea to see a consultant in London for a second opinion / transfer of care. I’ve got some serious health issues and am seen by a neurologist in London. I asked Dr Y at my appointment last week what the procedure is for getting K a referral. Dr Y immediately said that he would see him (not what I was expecting or asking for - bowled over by Dr Y’s kindness!) for an assessment and then would direct him to the best person in the department and make sure that he is seen by the consultant himself. At this point, I was ecstatic!

As instructed, K spoke to his GP and asked for a referral, maiking it clear that the consultant had already agreed to see him. The GP refused to refer him on the grounds that she ‘isn’t allowed’.

I have no idea what to do next. K is now at the stage that he can barely get out of a chair or get in and out of bed. I’m really limited in helping him due to my disabilities.

I hope this makes sense and if anyone can advise me, I would be so grateful.

Hi @layna1491, Welcome to Parkinsons forum. The first thing to do is to get K off the medication as it is totally unsuitable. Write a letter of complaint to PALS at the hospital where this Neurologist is. Ask at your GP Surgery if they know of a Pakinson’s Nurse in your area, speak to them & tell them of your experience with said Neurologist & see if they can get your man an appointment with another Neurologist. It is disgusting the way K has been treated, what does surprise me is his GP refusing to refer hi, is this his regular GP ? If not then get him to see who he is registered with for them to get the referral done.


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Ask what the procedure is for second opinion I was under the impression that patients have a right for that, is there a patient support group you could contact?
Last resort a private consultation with a consultant would help clarify the situation quickly !!!

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Hello cruisecontroler
Thank you for replying to me and apologies for the delay in getting back to you.
K has a Parkinson’s nurse - he has phoned her. It always goes to an answering machine and she does not call back.
It is K’s usual GP and I don’t understand her response. I thought everyone had the right to choose where they are treated? I need to do some research on this! If we could get a referral, we’d be half way to solving the problem!

Hello Lar
Sorry for the slow reply and thank you for replying!
Yes, I need to look into the procedure but I thought patients have a right to choose. I don’t know if there’s anything local but I’ve been given a link for The Parkinson’s Society so I’ll see if they can advise.