OH is in hospital yet again. This time it’s been 12 + weeks and last time 20 weeks. Both times the doctor, a movement disorder doctor, not a neurologist, (are they they same?) has increased OH’s medication much against our wishes, and to a huge extent from 750mg a day to 1250mg a day, of Madopar.
We feel it has added to OH’s confusion. It is one of many side effects of a Madopar. Doctor refuses, despite our concerns, and also having a registered Health & Welfare POA done many years ago when OH had capacity, to listen to us when we want him to gradually decrease the huge increase that he has instigated to see if it has actually contributed to OH’s confusion. He does have Parkinson dementia and fluctuating capacity and tells us that he doesn’t want the increased meds BUT the doctor insists on asking OH and OH agrees, as he won’t say no to a doctor.
Daughter is thinking of making an official complaint but I am concerned that that will make the situation worse.
This doctor has only known OH for their 2 hospital admissions, (previous neurologist was over the border in a different health board and we now can’t see them any more as our health board has a Parkinsons consultant but it is not the same person as this doctor).Doubt we could do anything anyway as OH is an inpatient so couldn’t see anyone else right now. I have monitored and previously had some control over OH’s meds with our previous consultant for over 20 years, what has worked, what has been tried/what hasn’t etc. My experience of medication with my OH and our opinions are being ignored.
If I am proved wrong then at least I will have tried to see if the huge increase of Madopar has or has not made their confusion worse.
What can we do and where to go next with this doctor who ignores us?
Hi Benji I am sorry to here that you have been in hospital, tomtop that all Those appointments to your doctor who doesn’t listen. I have had a really bad shock if you look at new topics you can read all about that there, but to cut a long story short I have now asked to be referred to be seen by another doctor too. I think it’s important if They don’t listen to you, you make them and when they don’t you look after your health and needs. I now it’s so so Hard and you don’t want to upset or go against any one, but your doctor is right you need to see they are harming you and coursing you more stress Which again effects your health too. But this is what I after a lot of saying yes has made me get to this point now. I hope this helps all the best Raz
Thanks for your reply. Sadly Parkinsons neurologists are few and far between where we live. Also, the fact that my OH is in hospital, we have no choice other than the doctor that they are under. Not a neurologist just a doctor. They have been given a long letter expressing our concerns and now that also has been ignored.
Really sorry to hear this. Have you tried giving the helpline a call for free on 0808 800 0303? Our team might be able to put you in touch with a Local Adviser in your area who may have some previous experience with this hospital that might help.
I phoned the helpline some time ago and they did give me alternatives to just increasing their Madopar. I knew the alternatives as I have made it my business to do so over 20 years.
I will contact our local advisor but don’t hold out much hope that they can help. If this doctor doesn’t listen to those who know my OH best and have a registered power of attorney they will have little time for another lay person. The only option now is a formal complaint to the health board and if that is also ignored then legal action.
Hi Benji, well I see that you are not really getting jkiiiuhiuuuhanywhere. I think if they are not listening to the letters. Than I think you can go to nhs direct and ask them that you move and want a new doctor, thats when you can try to put in another complaint.,
I just wanted to check in with you regarding your complaint to the health board? I would encourage you to consult with PALS (Patient Advice and Liaison Service) or service improvement.
It’s important to use the complaint process – before taking legal action. As an organisation we’re not equipped to provide advice on legal action unfortunately – but I’m sure service improvement would advise you to complain via PALS before legal action.
This is heartbreaking news and I am truly sorry for your loss because I know how much you loved your husband. Our deepest condolences go out to you and your family during this very difficult time.
We understand that bereavement can evoke a range of emotions, therefore, if you haven’t done so already, I would encourage you to speak to your GP about getting some emotional support from a local organisation or you can reach out to the Carers network who offers help on coping with bereavement when caring ends. We have more information via our website here - https://www.parkinsons.org.uk/information-and-support/how-do-i-cope-bereavement.
Please remember that you also have the support of the forum, I know you’ve made many friends here and I’m sure they’ll soon reach out to you with words of support and comfort. I’m sure you know the contact details for our helpline service so do give us a call whenever you feel the need to.
