I want to ask advice about getting a referral to a movement disorder specialist.
When diagnosed 3 years ago, I didn’t get a referral to anyone (apart from Parkinson’s nurse). I eventually (after 18 months with no neurologist) went to the GP and asked to be referred to Kings hospital for a second opinion (as advised by a neurology student who was conducting a trial in which I was taking part). Saw neurologist there twice: the second time he prescribed Sinemet. I had a bad time with it. In hindsight I realise that’s because he instructed me to increase it too quickly. He didn’t even tell me what times I should take it.
I phoned my Parkinson’s nurse, who gave me advice about stopping sinemet, and got me a referral quite quickly to a neurologist who wasn’t a specialist but apparently had experience with PD.
Things got very difficult 4 months ago. Thankfully they have improved. But I still don’t have a movement disorder specialist. I have asked my Parkinson’s nurse for a referral twice. She said she would get the neurologist to do the referral. Is this how it’s done?
I asked a GP at my surgery, who didn’t think it was her remit to do the referral.
I’m back where I started when newly diagnosed. I wonder why it’s so difficult to get the referral, and what I can do to get one.
I’ve left a voicemail for Parkinson’s nurse today, just asking if it’s underway.
Contact pduk
Neurologists who specialise in movement disorders are virtually non-existent in some parts of the country but most should have a neurologist or geriatrian with knowledge and/or interest in PD though not necessarily in your local hospital. As you have already had a second opinion and been seen at Kings hospital, is there a particular reason why you want to see someone else now? If your GP and Parkinson’s nurse don’t agree it is necessary, they may be reluctant to refer you unless you explain why.
An alternative would be to see a movement disorders specialist privately if that’s an option for you, though you may have to travel if there isn’t one locally. Your GP can refer you privately but may need you to give them the name & contact details of the specialist you want to see. As already suggested, the Parkinson’s UK helpline can advise you on specialists. 
Getting to an appointment at Kings would be very difficult now, since my PD worsened. I just want to see a local specialist.
My Parkinson’s nurse and GP are not refusing to refer me: they just don’t seem to know who should do the referral.
Thanks. Will do.
My guess is they either aren’t sure how to go about making a referral to a tertiary centre/who to refer you to &/or there are CCG rules that actively discourage such referrals because of local pressure on the service. Parkinson’s UK helpline should be able to advise. Good luck.
Thank you. I think it’s the GP who needs to refer me. So the lady I saw recently at the surgery let me down, in more ways than one. She said it wasn’t in her remit. She also demurred regarding a referral to a speech and language therapist, didn’t trust me, though I’m the expert on my PD. I told her I only knew the word ‘hypotonic’ because it had been used to describe me. I also told her I live alone, and have no one to speak for me, so need to preserve the ability to communicate as much as possible.
It’s useful to write about it here. Need to get it off my chest. I was treated disgracefully, by that GP, and also previously by 2 nurses I’ve seen at the surgery.
I have a phone consultation this afternoon. It’s about one of my meds. I’ve waited about 10 days for it. I’m going to try to seek a referral to a movement disorder specialist as well, i.e. mention 2 things, which they don’t like. Wish me luck…
Have you consider trying to see a neurophysio instead? They obviously assess movement issues and can give you advice on exercises etc. Our wonderful neurophysio runs PD Warrior classes for us and I have learnt more about how to relieve symptoms and improve my movement than I have ever learnt before.
I’ve never heard of a neurophysio before. Would I go through the GP?
You could get a referral through a consultant or a Parkinson’s nurse.
Not everywhere has specialist neuro physios though - yes ask your GP in the first instance or you may be able to self-refer but in some areas they deal mainly with stroke patients. If there is one, worth their weight in gold. My husband was referred to a community physio by our GP and it turned out she had a lot of neuro experience in her previous job and she was brilliant so not always a specialist referral you need. They will refer you on if not within their own expertise.
Thank you. Sounds really helpful.
Thanks.
Hi cmw95
As it happens I am going to see a Movement Specialist in 2 weeks time. My Consultant was going to arrange for me to see her. I went early December to see my PD Nurse Specialist and I asked him if the Consultant had mentioned anything. The upshot was my Nurse arranged the appointment for me and I received confirmation about 2 weeks later. Don’t get me wrong I like my Consultant he is very good as is the Nurse. My Consultant is like yours not a specialist in PD ,but knows about PD, his speciality is in memory which can also be part of PD. Are you still at King’s? I go to Charring Cross Hospital, I have been going there since I was diagnosed about 13 years ago. They have Parkinson’s Specialists Consultants, Nurse Specialist and Movement Specialist. I have been living in Torquay Devon for the past 3 years and I still go to Charring Cross Hospital. I consider myself very fortunate to them all. Where did you go before you asked to go to King’s?
I hope you get your referral.quickly.
Sharon