I do apologise for intoducing yet another topic, but I do not want to intrude upon Hopefull's plea for information.
I fully agree with Kate's statement that a GP is supposed to look after their patients' well-being. Howevever, it has been my experience that once referred to a consultant, the GP is reluctant to inform, advise, change medication without firstly consulting with the consultant! And oh boy does that take some time!
I have found this to be very frustrating, often leaving me without an answer to quite a simple Q e.g is it O.K. for me to take a dose of PD medication earlier than than advised by the consultant.. For example ,if I am awake at 4 a.m do I really have to wait until 8 a.m. as the time advised by my consultant to take my first dosage of PD medication? Or whether to take the slow release version at night or in the morning?
I will admit to, in the absence of advice from GP (owing to delay in communication with consultant) taking matters into my own hands and doing what seems best. I should point out that I will always report this at my next neuro consultation
So, I suppose my point is do I stick strictly to the consultants drug regime, wait for months ror advice from GP, or do what my body seems to be telling me it needs ((within limits)
Or maybe I should change GP?
You are right Annebernadette, my GP would always want to contact neurologist first before any changes in prescription. My previous GP understood the situation much better and probably felt more confident to make his own mind up and would be happy to make small changes, while keeping in mind the recommendations the neuro made in his advisory letter.
I have a very good relationship with the neuro, who knows I will not go over the top and that I am sensible and therefore he gives me more or less a free hand, within certain limits of course, to experiment with dose and frequency of the drugs he advises the GP to prescribe. It is up to me to try and find the best way of controlling symptoms. He only advises and suggests what is feasible.After all, the drugs are only there to give relief of the symptoms of the disease and the patient is the only one who can judge this. (or sometimes the carer too)Between appointments(in my case annually) symptoms are bound to change , for some more than for others and so a certain amount of adjustment in medication could be desirable or even necessary. If it is just a matter of a slight increase, I am allowed to do this without further consultation and I have some leeway for this in my prescription. If it looks like a new drug has to be added, then I will contact the PD nurse to ask for an early apppointment with the neurologist.
By saying that the GP is reponsible for a patient's wellbeing, I mean that it is not just the PD care, but the total care for body AND mind that is their responsibility. And they are the first port of call, of course. Ideally they should know their patient, but this becomes increasingly more difficult with may surgeries having several part-time staff and so the patient sees a different doctor every time.
Thank you so much for your reply Kate ( I was actually hoping for a response from you - must be telepathy!) You have reduced my paranoia level. Once again , thank you
Hi Kate and Annebernadette I am a newbie to this site but I am a parkinson's sufferer for nearly 5 years I was 48yrs when I was diagnosed, I am also a practice nurse working in a GP surgery for 23yrs ,I know GP's should be responsible for there patients well being but I think the problem is the goverment making it hard for GP's many GP surgery's have part time or locum GP's due to cost and pressure of work I am fortunate that i work with really good GP's and also I am a patient there but although they are generally good and our patients will often say it is like a family home when thay come to surgery as every one is pleasant and helpful and professional, we have 5 Dr's 4 nurses and 8,000 patients but the doc's know most of the patients and are interested in there care, it is difficult for them to keep up to date with every condition and the latest drug therapy we have meetings every 2 week and discuss medication changes as one topic but in the hour meeting we may have 4-5 topic to discuss and some times it can be 5-6 changes in diabetes, parkinson's, cancer drugs ,high blood pressure drugs travel injections and so one and that can be every 2 weeks and it is very hard to keep it all in your mind. As for specialised treatment as Parkinson's meds they would rather trust the consultant or in some cases the Parkinson's nurse who can change and advice patients on medication. I have had many problems with the medication,I am very sensitive to many drugs and have been in some terrible states with side effects, so my GP would not dream to change my meds ,my consultant has a job thinking what to do next ?, I live in Sheffield and contacting the consultant is very good as if he is not available they will get some one else to deal with it. As for taking your treatment it is partly up to you ,I find if I wake early and take my meds early I suffer in the evening as the meds i am on are every 3 hours and my night time dose if 10pm in total i take 38 tablets a day, if i take them early i am suffering from the last day dose until 10pm I do start taking them at 6-30am as it is !! but recently I have had some deterioration and i am seeing a neuro surgeon to discuss Brain surgery !! scary. Sorry i have spouted off and you may think I am defending the GP because i work there but i feel if you know the pressures your GP may be under you may be less annoyed I know some surgeries are not very good and some people change GP's. Hope you get on alright but if you have any further problems i would be happy to help as best i can.
Its good to hear the GP's perspective. My doctor told a friend how nice it was when they were "on strike" and only seeing emergency patients It was like his early days as a GP when they had time to talk to patients.
Since my OH was diagnosed 14 years ago our GP never interfered with anything that the consultant prescribed or advised. He said that they knew better as he had very few Parkinsons patients to deal with on a daily basis.
GP retired a few months ago and we have had nothing but problems since then.
Consultant and P nurse advised splitting a 250 dose of Madopar to 2x 125 doses. Letters sent to our new GP by both of them. They could not take on board that there was no increase in medication just 2x125 as oppposed 1x250, the same amount.
New GP says they want to review OH's medication despite the letters sent to them!!!I said that no way were they going to do this. MY OH had never even seen them just as they had never consulted our previous GP about their Parkinsons.
GP's do not have enough experience of patients with P to advise on medication.
Last year OH was in hospital for 3 weeks and underwent major surgery. They were given a double dose of meds one day and a refusal of a top up dose the next day, until the Parkinsons doctor had reviewed their medication. The Parkinsons doctor had not seen them at any time during their inpatient stay!!! He was prescribing unseen and without any confering with our usual consultant. Appalling!
What hospital was OH a patient ?, I live in Sheffield and I was told by the PD nurse if I was admitted to hospital my relatives or staff had to contact her .When I was in hospital she was informed and visited she informed staff i was to self medicate and any problems she left her contact number and the consultants number and registrars number and had it recorded under no circumstances was i left with out medication or treated with out consultation with her or medical PD trained specialists. My husband was also told if I was having medication trouble he was to contact the neuro medical team ASAP so i was treated effectively for my PD. I am sorry you experienced this problem but if OH goes in to hospital again stand up and cause mayhem until they give the right treatment at the right time ask to see the head of the hospital make a nuisance of your self until you get the right treatment for OHt
my gp is pretty good with me,he saws he has very few pd patients,but has took it upon him self to be nollaged by this disease,which i think is a good thing.when i need a prescription for pdthings upping or lowing,he advises me to contact me pd nurse by phone,if i have no look ,cus there in hospital clinics etc,gp offers to help out him self,to contact pd nurse him self and then contact me back.or im left weeks and weeks to see or contact the neuroligist.if i ring me gp he is very very helpful,the hole practice im with seems to be great,i feel im very lucky.when i lived 10 mins down the road in a car ,5 years ago,went to a different practice,total different story.they not seem to be bothered,i found me self ringing up all the time,making me feel like self a nusience,but all i needed was me meds to be correct,and feel weller than i was.so i guess,it depends on were you live,i carnt say county,cus i was obversley in same county 5 years ago.this is so rong in my eyes,it something the nhs has to get rite,but agin this is another story,and another thread i guess