I live in an area which has one consultant and one PD nurse, The fxormer is set in his ways and rather unimaginative, while the latter has no knowledge of Parkinsons and is “learning on the job”. That is it. No choice. It is aan bysmal service. I feel stuck between a rock and a hard place. I am unhappy with the treatment/care and would like to make an appointment with an uout of area PD Consultant - I want to be assessed as I am currently and the medications viewed as to appropriateness and efffectiveness. Has anyone any suggestions on either the way to go, or can suggest a consultant in the South East or South of England. My GP suggested I find one in Top Docotr but all the ones that come up as being in my area are located either in London or Kingston on Tjames or the Home Counties. I am prepared to go to London but I would prefer to find access to a knowledgeable individual in e.g. Portsmouth or Brighton. Thank you for any and all suggestins, advice, experiences.
Thank you for sharing this with us. We’re actively trying hard to campaign for better healthcare for people with Parkinson’s and for more Parkinson’s nurses. Our friendly forum should be able to offer some peer to peer advice and also you have our lovely helpline team available. You can reach them at 0808 800 0303 at any time.
Good afternoon Motherofthree … We live in a similar area & I have also found that there is very little NHS choice in my area, In January I will be seeing a neurologist specialising in Parkinson’s & neuropathy [which I have]. I have chosen one at the Nuffield hospital in Tunbridge Wells.
I was also given the name of another neurologist at the Nuffield Hospital in Brighton. I have no idea how good he is as I haven’t seen him. But you can easily look him up. Details as follows.
Consultant name: Dr Richard Chalmers
Practice / Hospital name: Nuffield Health Brighton Hospital
Practice / Hospital address: Warren Road, Woodingdean, Brighton, BN2 6DX
Practice / Hospital tel. no: 01273 624488
Best wishes
Steve2
My understanding is that fees are in the region of £250 for an initial appointment.
Thank you, Steve, that is a hugely encouraging and helpful reply. You sound as though you might live in my area, with the same attendant problems and lack of provision of basic PD care. The PD provision in our area is tantamount to neglect at best, to an abuse of the right to fundamental and appropriate care and verging on the criminal. We had only the consultant for 18 months - we PDers were told to consult our GPs, most of whom know nothing about the condition - then the service was greatly improved by the appointment of this newbie Nurse. It has gone from bad to worse since then. I do thank you for your input and I will investigate the name you gave me and hopefully, be able to progress positively forward.
Hello Motherofthree … I was diagnosed in June 2023. My initial GP referral to see a neurologist was some 3 years previous but got lost in the system. When I did get to see this neurologist I found he was a locum from Armenia. He did organise a very prompt mri scan for my brain & spine, both were normal. He also organised a brain datscan that was positive for Parkinsonism. I was diagnosed with atypical Parkinson’s, also for neuropathy. His speciality was not Parkinson’s.
My last appointment with him was December 2023, that got cancelled as he had returned to Armenia. I have seen no one since although I do have an excellent male Parkinson’s Nurse. He has 750 NHS patients [should be 300].
A problem I have is that I take around 20 pills a day. Two years ago I was not taking any pills at all.
Do contact the Nuffield Hospital in Brighton & ask for a list of their neurologists that specialise in Parkinson’s.
Do let us know how you get on.
Best wishes
Steve2
Hello Steve - I was diagnosed in 2015 and then lived in Nottinghamshire, where I had access to several consultants and four PD nurses. It was a shock to arrive in Eastbourne and find that the PD care was minimal. At that time I had access to a wonderful and experienced PD Nurse. She left in 2021 due to pressure of work (she had over 700 patients) although she always was there for all of us. No-one was hired to replace her until latte 2023 and the inexperienced newbie didn’t come on-stream until early in 2024. So far, touch wood, the condition has progressed very slowly. I am on Rotigatine, Entacapone and Sinemet - altogether 2 patches, plus 8 doses of meds per day. I have been trying for nearly a year now for the problem with my mobility to be addressed. I can expound until I am blue in the face, to no avail. The Nurse is determined that it is due to freezing, which it is not. She is difficult to contact - once it took over 2-1/2 months to contact her, leaving messages and sending emails. Finally, as the result of an all-the-ball Neurology Secretary red-flagging an all-points alert to her, I was contacted - the excuse being that “she had been busy”. I might as well have saved my breath to cool my porridge for all the help I obtained and I am more or less back at square 1. I have now been prescribed rasaginale once a day. I am extremely reluctant to take this without the whole situation being reassessed via a second opinion. I had a simply horrible experience with Opticapone, which was prescribed to extend the “on” periods - totally mind-changing and I was a hair’s breadth away from losing my mind and being sectioned. So, that’s a brief scenario. I have already started on an iquiry as to the possibility of an appointment with Dr Chalmers - he certainly has a good resume. You have given me heart, thank you.
Hello again … About 8 months ago I signed up with Benenden Health Insurance, which is not for profit. It costs me £15.50p a month. You have to be with them for 6 months before you can claim. They cover pre-existing conditions. I got the referral to see the neurologist from them. They sent me a list of 3 neurologists they use. Brighton & Tunbridge Wells are both 30 miles from where I live.
I get to see this neurologist for free, that’s an initial consultation & a follow up appointment. From their email to me …
One initial consultation
An x-ray
An ultrasound scan
A pathology test
One follow up consultation
Best wishes
Steve2
Hello Motherofthree
Sorry to hear your predicament. As I understand it we still have choice under the nhs where we receive our treatment/care. As such we asked our GP to refer my husband with Parkinson’s to Kings College Hospital in Denmark Hill, Camberwell, South London as they hold the accreditation of hospital of excellence for the treatment of Parkinsons. (Haven’t checked lately if this is still the case !). Technically he is under the care of Professor Chaudary. We do not often see the Professor but am 100% happy with the neurologists who have taken care of my husband for the last 12 years. we live in West Sussex and yes it is a pain to get to Kings College particularly as now as my husband is (unrelated to Parkinsons) a full time wheelchair user. The other aspect is all medications/treatments have to be paid for/authorised/ set up by your own GP so that side can be tedious. Kings College is a major teaching and research hospital and we’ve been pleased to be involved in various research projects over the years. Good Luck. Jane
Thank you, Steve, for all your helpful advice and information. The info has enabled me to book an appointment at the Nuffield Brighton for late January. I will need to pay but it is worth that to make a positive start towards improved care and treatment and most of all, peace of mind. I will certainly investigate Beneden Health and perhaps in the coming months, I will be able to take advantage of what this has to offer. All the best for the festive season and many thanks again.
Hello Plus 1 - thank you for your input. You are quite correct in that we have a choice under the NHS regarding our treatment. While my GP was willing to refer me to wherever I chose, he discouraged me from applying as an NHS patient to Kings College Hospital - for reasons of availability of appointments for NHS paitents. I cannot afford the fees of Professor Chaudary, much as I would like as he is my number one preference. However, I have been fortunate to obtain an appointment in late January with a consultant at the Nuffield who has an impressive resume and reputation, so am content with that at the moment. Until such time as I can take advantage of a private medical plan, I will pay for an initial consultation and whatever follow-ups are required. I hope to be subscribed to a private health insurance plan shortly and within six months to be able to access all the services. I do not, for now, forsee my outlays to be frequent or large but it will be good when I know whatever outlays there are, will be covered through the plan. In the meantime, I hav asked my GP to refer me as an NHS patient to Kings College - who knows, perhaps pig might fly and an appointment for a date in the near future will be offered. I, too, am involved in various research projects and find them extremely worthwhile, as well as contributing to my sense of worth. As two of them are projects of long standing, over the time the participants get to know a little about the lives and circumstances of their fellow participants; at the end of a session it has now evolved that we exchange news and views and opinions, which is encouraging, useful and gratifying. Thank you agan for your input and I wish you and your husband all the best for the festive season and for the new year.
The centre of excellence for PD and other neurological conditions is the National Hospital for Neurology and Neurosurgery, Queens Square London - part now of UCLH. My neurologist , Simon Farmer, is involved with the huge research facility they have. I have been diagnosed with PD for 16 years and, despite having lived in Lincolnshire and now Norfolk, I have continued to see him regularly.
Benenden is great. I have been a member since 1971. Unfortunately they do not do continuing care. They do some surgeries but, in the main, they provide for the diagnosis of new conditions. They give you a temporary Bupa membership worth £2500 to get you the tests and consultations you need for a diagnosis. I recently used them for a heart issue and received a diagnosis of sinus tachycardia.
Regards.
Doug
Good afternoon Douglas … Thank you very much for your interesting post on Benenden Health Insurance. I have only been a member for about 10 months, paying only £155.50p to date & am getting this marvelous facility to spend up to £2,500 on getting this Neurological diagnosis. Like you I have been given temporary Bupa membership. It did surprise me that I am seeing a Neurologist at the Nuffield hospital when I would have thought I would see one at the Benenden hospital. Afterall they only need a consulting room & a Neurologist. Do you know why Bupa is being used? The two hospitals are both only 30 miles away from me, so not a distance issue.
The choice of Neurologists they gave me was excellent, clearly far more knowledgeable & experienced than the NHS one I have seen.
My excellent Parkinson’s Nurse says I am an interesting case as I have a number of different health challenges & he is unclear as to which is causing my mobility problems. I have Parkinson’s, Neuropathy, wear & tear damage to my spine & Arthritis. There is also all the medication I am now taking [some 20 pills a day].
I am delighted that I am able to make a start by seeing a Neurologist specialising in Parkinson’s. But what future consultations might I get through the Benenden? Is this the last time I can use them for this mobility issue? Or if I only use £400 of the £2,500 I am allowed do I still have £2,500 - £400 = £2,100 left to spend ?
What do you mean by “continuing care” ?
Best wishes
Steve2
Hello again Plus1 & thank you for your interesting replies to our posts. You mention that we have a choice in who we can be referred to on the NHS, but what the NHS [my GP] don’t seem able to do is advise you on who I should see.
I have frequently had a conversation on a health issue that my Parkinson’s Nurse says is something my GP should deal with & my GP says is something I should talk to my Parkinson’s Nurse about.
Best wishes
Steve2
Good afternoon Motherofthree … We do live close to each other. I live halfway between Eastbourne & Bexhill. I see my Parkinson’s Nurse at the
Conquest Hospital in St Leonard’s. I also attended a 6 week [once a week] Neurological Physiotherapy course at the Conquest which was very helpful.
I had a 1 on 1 with a Parkinson’s physiotherapist. They do an assessment with tests before the course. I scored 26/50. My score was higher after the course.
Not sure if I said but my main issue is mobility & “freezing”, which happens all the time. I am on Sinemet & have just been prescribed Rasagiline which I haven’t taken yet.
I am seeing my Neurologist on January 15th.
I would be interested in hearing about your freezing & mobility issues to see if you have the same issues I do.
Best wishes
Steve2
Continuing care is, basically, care following diagnosis. So once you have a diagnosis then you are back to the NHS or your own private care for the treatment/care that follows diagnosis.
Once you have a diagnosis of Parkinson’s then, as far as I remember, there is a 2 year period when you will not be seen for that again unless there is the need for a subsidiary diagnosis. All payments are at the discretion of Benenden and first require a referral by a GP for an NHS consultation that will not result in being seen within 6 weeks. Once your diagnosis is achieved the temporary BUPA membership ceases. It is for you to manage the £2500 during your diagnosis journey. This can be quite a challenge if you have tests involved. In connection with my leukaemia I had to see a rheumatologist as 40% of those diagnosed have autoimmune problems. My blood tests cost £1000!! MRIs etc are very expensive done privately.
You are usually given a choice of 3 consultants based on where you live. As you will appreciate Benenden is a national service so using BUPA makes sense. When I joined in 1971 it was the “Post Office and Civil Service Sanitorium Society”
GPs are not experts in searching out Movement Disorder Specialists - the best consultants for PD within neurology. They will, unless you request otherwise, just refer you to a neurologist at your local hospital. A lot of this, in my opinion, is due to the cost of secondary care to your local Integrated Care Board.
I found this on neuropathy, also a complication of diabetes: https://academic.oup.com/brain/article/146/1/225/6516343?login=false
Incidentally, I was the patient and public representative on the UK Brain Bank Management Committee - until its funding was withdrawn by the MRC.
Regards
Doug
Thanks for all that interesting information Douglas. You indeed are very knowledgeable.
My very good & experienced Parkinson’s Nurse had a new helper assisting on my last visit. I did wonder whether a person with Parkinson’s might have been someone that was more suited to the position. She did not seem to understand much of what was being said. I suppose everyone has to start somewhere.
Best wishes
Steve2
Hello again, how disappointing to hear this response from your GP. We waited no more than 6 months for an appointment with a member of Professor Chaudary’s team. My husband has received exemplary care for the entire team seeing them at least twice a year throughout the 12 years since diagnosis.
We’re grateful because there is no way we would have been able to pay privately to see a neurologist nor paid for the medication and scans etc prescribed.
Very best wishes going forward. Jane
Hello Steve
Sadly no, GPs do not generally advise who is best to see. I think some may, particularly those that have specific knowledge/experience of a condition or perhaps a connection/interest. Otherwise it is down to us the individuals to do the research.
Parkinson’s UK is a great place to start researching. Good old Google will provide information on hospitals of excellence, support groups such as this forum too.
Best Wishes Jane
Good evening Jane … As I don’t know what is causing the symptoms I have it is
very difficult to know which “expert” I should see. I feel that my problem is unlikely
to be diagnosed correctly & if it were there is unlikely to be any treatment. But I do feel that I want to try rather than give up.
Best wishes
Steve
Hello Steve 2 - I am tempted to say “snap”! At the EDH I also toook part in the 6 week Neurophysio course, which I found to be about the most useful thing I have attended or been offered in the years since I moved here. Yesterday, during a very fraught conversation with the PD Nurse, I was offered a referral to the NeuroPhysio Department for assessment and participation in the course. Okay, I have done it before but I might as well do it again and I feel that I do benefit from this course. My appointment with the PD Nurse prior to the telcon was a couple of weeks ago, during which another lady was present. No-one thinks of introducing the other observer and I am not about to divulge anything personal without knowing to whom I am addressing - it turns out the extra body is the 3rd Parkinson’s nurse - like the current one, fresh off the plane from abroad and with no training whatsoever. However, I will admit that this one does seem intelligent and has more of a grasp of the condition than her “trainer”. Yes, people have to start somewhere but to have no experience of nursing in the NHS or a complete stranger to the ways of the country and with no experience or training in PD, this is expecting too much and should not be permitted. Guineapigs springs to mind! Okay, there is a consultant so that she can ask unanswered questions and then get back to the patient but this is cumbersome and tim-consuming and often the info between all parties is relayed inaccurately, often resulting in mistakes. To be allowed to prescribe meds and make decisions when not fully trained or experienced is beyond the pale. Is there any other profession that would allow more or less carte blanche decision-making to be carried out on the public by a largely unsupervised rookie! I know exactly who you see at the Conquest and you have the better option between the two hospitals. Another “snap” is that my main issue is the same as yours, with the same frequency. After over ayear of complaining, I have just been prescribed Rasagiline. I, too, have not started the course. I am reluctant to do so, bearing in mind that it was prescribed by said PD Nurse and I feel that it has been prescribed so that I would go away. I am certainly not going to start before Christmas and after New Year, I will see how I feel about starting, whether I want to take the risk of everything going haywire or being left in the lurch. How about yourself? Or have you not taken this med yet because you have not yet received it from the phramacy? I have told the PD Nurse that I am reluctant to start this med and have been told that if it doesn’t work or has side effects, I can come off it. Which is rather open-ended. It is the difficulty of making contact with the PD Nurse that has a huge effect on my sense of confidence and well-being. Plus, while she speaks Engllish, her command of the language is not good and she often fails to explain clearly or to understand what she is bieng told, interpretting her own version and twisting the meaning to fit “in a box”. I have been given an appointment with the “multi task” neurological team at the EDH, which is really a waste of time as it is led by the neuro consultant I have already seen. I mentioned to the PD Nurse that I thought it was time I sought a second opinion, to be told that the appointment with the “multi’task” team was my opportunity to obtain a second opinion. Some choice! This appointment is just a week prior to my appointment at the Brighton Nuffield, so to Brighton I will go armed with the latest information gleaned from the EDH. Pleease keep in touch and let me know how you fare with the Rasagiline.