Refral/Moving Area - Advice Please

Hi, I am after advice and personal experience.

For various reasoning (which I will not bore people with here), I am unhappy with the support I am getting and will be getting in the future in the Leicestershire area, especially around the timeliness/frequency & consistency of that support.

I have spoken to my GP, and they agree that for the continued care & support of my PD it would be best to look to be referred to another area. My GP has asked me to suggest a #1 & #2.

So my ask, is can anyone recommend an area/hospital in the surrounding areas to Leicestershire based on their experiences. I am thinking Notts, Brum, Coventry, Northants, …. Further afield is a possibility, but I need to consider transport requirements (more in the future, it is not an issue currently)

I am in my early 50’s, mobile and still working (IT). I have had PD symptoms since about 2012 and was diagnosed in 2015. I am (so I am led to believe) on relatively low levels of medication (8mg Ropinirole XL once daily and 2 x 12.5mg/50mg Sinemet three times a day). My PD has developed relatively solely, but has significantly worsened in the past 6-9 months due to some personal situations I am trying to resolve.

Thanks in advance for any suggestions/advice

I would appreciate it if you could let me know how you get on. I live in Leicestershire and am fed up with the treatment (or lack of it) I seem to be getting at the moment. I am not alone in saying this. I know a number of people with PD and are struggling due to the lack of support. I feel like saying to the present medical personnel that I didn’t ask to get PD. and I am sorry I am so sorry for taking your time in requesting care from you ………

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Hi both,
I live in Coventry and hand on heart can say I am so supported.
I was diagnosed in June 1019 by a Neurologist, within six weeks I had seen a PD Specialist Nurse, been introduced to my local Nurse, referred to a Movement Disorder Specialist and received Physio which is ongoing. Phew!
Maddening that your postcode decides your treatment.
Ask to come to sunny Coventry!

Good luck to you both and let me know how you get on :slight_smile:

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@JonB, @Eve1, @AMU, Addenbrookes at Cambridge is not so far from you all or may be at a push John Radcliffe at Oxford. Addenbrookes was where I was and I found the Consultants there pretty good, I was under Dr Phil Buttery who saw me through my DBS Operation. Hope these give you more options.


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@JonB agree with @cruisecontroller Addenbrookes is excellent, I get lots of support from my neurologist and he makes sure that other health care professionals in Norfolk know about me and makes sure that I am gettingsupport I need.e I am getting th

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Hi…we are in Wiltshire and the support my Husband gets is poor…not seen by anyone,consultant or PD nurse since end of 2018…

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Postcode lottery is so unfair in Norfolk the care is ok but not like the care I got by transferring to Addenbrookes in Cambridgeshire. I see my neurologist every 6 months and my Parkinson’s nurse every 4 months.
There really needs to be something done about health care lottery it is not fair all I can say is get an appointment with your local MP, Parkinson’s UK can help with you some points to raise and get them to raise a question with the health minister on your behalf. The more of us who can lobby and raise the issues concerning the level of care for PWP it will help to raise the profile of Parkinson’s and the inequalities we face compared to other life altering disease for example free prescriptions for those of us who live in England. Those in Scotland, Northern Ireland & Wales already get free prescription for everything.

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Thank you for your advice and suggestions. Coventry & Cambridge look like the 2 I will request - thanks again