I was diagnosed 6 months ago. Initially, the support and communication with my specialist was good and communicated with him via his secretary. After a while, I stopped getting replies leaving some questions unanswered (regarding medication) without explanation. I have since had a meeting with the nurse and unfortunately, this wasn’t helpful. Before communication ceased my specialist was considering increasing my meds. I am taking Madopar 100/25mg 3 times daily. I feel that I am being ignored. Is this normal treatment on the NHS?
Hi and welcome to the forum @peterb100. You’ll find everyone very friendly and supportive here and I hope that our members will be along shortly to say hi and tell you about their experiences.
I’m not sure why communication has stopped between you and your specialist, but it sounds very frustrating. Have you had a chance to talk to your GP at all? They may have some ideas for you. Our helpline advisers are also there to listen and may be able to direct you to further support. You can reach them on 0808 800 0303.
We have some helpful advice here for people who are newly diagnosed including a to-do list which you can work through.
Welcome again and we’ll forward to hearing more about you in the future,
Forum Moderation Team
Hello Peterb100 and welcome to the forum
As JaniceP said in her reply, I too can offer no reason for the lack of communication from your consultant now when before it was good. A call to the helpline as she suggests may help and is worth trying.
One of the things that has shocked me since coming to the forum a few years ago, is that Parkinson’s services are not consistent across the country. I have been lucky, in the early days I saw my consultant very regularly until my meds got sorted. After that I saw him every 6 months, in line with NICE guidelines and when a specialist nurse was appointed the appointments alternated between the two so I see both of them 1/12 six months apart. I have also been able to contact them between appointments should I need. Sadly my experience is not that of far too many people. The forum is littered with posts from people who can’t get hold of their medical team, who don’t even know their consultant’s name, who haven’t been reviewed in 2 years plus - and was before covid hit - and so on. Obviously this is an unacceptable state of affairs but I think it is arguably more difficult for people who have not long been diagnosed and are still finding their way, such as yourself.
It seems to me you have two choices. First is to keep trying to make contact with your consultant and/or your GP to see if your previous good communication can be restored. You have to be tenacious and stand your ground it seems but you have every right to ask questions and expect those questions to be answered. Ring the consultants secretary to explain your concerns and ask she brings it to his or her attention. If you can get email addresses use these because you have a record including confirming calls made.
Alternatively you may want to consider changing your consultant; I appreciate that could feel a bit drastic but it is an option open to you should you wish.
I am only sorry that you find yourself in this unacceptable position and hope you are successful in getting your voice heard and your concerns addressed. Please keep us updated on how you are getting on - no-one should have to battle to get the support they need, sadly that does seem to be the experience of too many people with Parkinson’s or those supporting them.
I wish you luck
Thank you Janice and Tot for your input. I contacted my GP and that got the ball rolling. My specialist’s secretary had retired and no one had thought to intercept or divert the messages to her. I have now been contacted by my specialist and he has now addressed my concerns I was left in limbo for 2 months and things like this just shouldn’t happen. This looks very amateurish and it pays to keep an eye on the ball. Fortunately, my GP sorted it for me.
This forum is very useful and I find a lot of useful stuff on it.
Hello peterb100 thanks for the update and glad things have got moving for you now, but like you said these things just shouldn’t happen sadly they do and it seems quite regularly.