Hello all - as a brief introduction, my father (72) was diagnosed with Parkinson’s a couple of years ago - so far my mother and he have been muddling through following consultant advice on medication, but through conversation with my mother there are a few questions and concerns that have come up - they naturally keep themselves to themselves and are hesitant to engage in community groups, so I wanted to take the step of seeking guidance from this community myself - hoping you can help steer me in the right direction, whether it is just who the right people would be to seek formal second opinions from or any other thoughts.
- Medication question
- my mother has made me aware of a concern she has about the amounts of medication prescribed by the consultant - medication prescribed to dad often only covers a period of approx 25 days which means frequent visits to the pharmacist - given these should be taken on a routine basis, should the prescriptions cover a longer time period? Or are there reasons for these lower amounts?
- Consultant appointments
There is a general sense of concern around the frequency of consultant appointments. These are generally every six months, with the outbreak of COVID having meant that a phone appointment held in July 2020 was the first since October 2019. Medication has been changed following almost every appointment to date.
Concerns from this are:
a) how are consultants supposed to have oversight of the effects of the medication and monitor their effectiveness when the patient is engaged only once or twice a year? Are there other avenues we should be pursuing to have more frequent touch points?
b) often my dad takes the “keep calm and carry on” approach of stating to the consultant that he is fine. My mother will often try to contribute to these sessions with her own observations (which I would have thought would be important information for a consultant as well as the patient’s own insight) and has been hushed by the consultant several times - is this normal practice? It seems discourteous to me!
c) on the basis of a maximum of two appointments a year, is it appropriate for these important medicines to be changed on such a frequent basis?
d) should dad be seeing other specialists over and above the Parkinson’s consultant?
Appreciate the above is a bit of a ramble - please let me know if any further information would be helpful, and I would greatly appreciate your thoughts on these points!
A very warm welcome to the forum, I am sure our online community will soon share their experiences. However I would suggest that you contact our helpline on 0808 800 0303, or email: [email protected], as they can (a) put you in touch with a local adviser who can tell you if there is a Parkinson’s nurse available to your parents and (b) get one of our Parkinson’s nurses to give you some general advise/information.
I hope that helps
Sue- moderation team
Hi @Swimble87 and welcome to the forum. It’s definitely worth trying to get a referral to a Parkinson’s Nurse if possible as they have a lot of specialist knowledge and are often able to give you more time than the consultant. I have only been seeing my consultant annually and she now says that she doesn’t need to see me again for 18 months. The Parkinson’s nurse here is able to arrange an appointment quite quickly and was seeing me every couple of months until recently when she has agreed to leave making another appointment until I contact her as I have now found a medication regime which works well for me. The first appointment with her was an hour long and she talked through lots of things with me and my husband.
I think it’s quite normal to change medication frequently at first until you work out what is the best regime for you. My Parkinson’s nurse recommended changes a couple of times this year with a quick follow up appointment to report back.
My husband always attends my appointments and is listened to if he wants to say something. He does take a back set and let me explain mostly though and would only add something if he knew I wanted him to.
Hope this helps
As others have said try and find out if there is a Parkinson’s (PD) nurse in you area, they are extremely helpful. Up until COVID kicked in my appointment schedule was consultant every six months for about 30 mins max and my wife attends mostvand is asked to take an active role, in fact she has on occasions been called by my consultant for her views with my full knowledge that this is happening. PD Nurse every 3 months and again my wife has attended some of these due to work commitments. I also if necessary call and leave a message on her answer phone if I have azcny queries which I always get a response within 24 hours.
I also have 3 appointments a year with the community rehabilitation team who work closely with the PD nurse and discuss my needs and relevant info. Finally and this is most difficult nut to crack is the GP as much as they don’t like it, in my experience, they are part of the health team that should be looking after your father. I know because both the GP and my consultant have told me that they have had discussion in which my consultant told the GP that he had a duty of care and could not just keep saying things like we will leave that for you to bring up with your consultant. He was also told that the normal rules in my surgery a 5 min appointment to discuss one issue was not appropriate due to my condition and it should always be a 10 min appointment this took nearly 2 years to achieve.
Sorry for ramble but first step try and find out if there is a PD nurse in your area. Best wishes to you and your parents on this journey with parky.