|On 1 August 2017, we had a very successful discussion with Debra Cochrane, a community pharmacist on the variety of medications that we are taking to manage our Parkinson’s. Feedback was that there was quite a bit to follow up.
We have been very fortunate to be able to partner with the University of Auckland to undertake much-needed research into this very complex area.
An exciting collaborative effort is underway to scope out what might be a useful approach to take to provide practical support to people with Parkinson’s so that we know where we are at with our symptoms and to manage the fine tuning of our medication thereby maximising the effectiveness of the medications that we take on a daily basis.
The research team has been working on this issue for 18 months and we were part of the first phase of this research when Monica Oad, a Masters student from the University conducted a survey of current practice amongst people with Parkinson’s nationally and presented the results to us in 2017.
This next phase has been designed to put a resource together so that the management of our medication is more within our control as tangata whaiora and we get the maximum benefit possible in our daily lives.
The research team has put together the approach (very much aligned with the philosophy of PwP Inc – autonomous self- management to the greatest extent possible) and we have taken advice from a number of you in this process.
Now we are ready to field test the resource.
The best way to do this is for you to have a go at using it and then come together to share your experience of using the package. We have had some positive and encouraging feedback already from a wide variety of people including health professionals. Now we just want to double check that we have got things lined up and presented in the best way we can at this stage before we launch more widely.
Therefore your help with this is critical to developing a resource that is useful to our people in their daily lives.
1. take time to work through the resource for yourself and complete the programme tasks;
2. come to our focus group on 13 August 2019 starting at 10.30am (Tea and coffee at 10am)
at the Mt Eden Bowling Club to review the resource together;
3. tell us if the work is ready to be launched on the world stage via the internet or not.
This resource is unique to us in New Zealand and in the international literature there is nothing like it currently available. So we are breaking new ground here and would appreciate your involvement in the work at this stage to make sure it is top notch.
This information sheet will help you decide if you want to take part. If you are interested, then click here to access the resource.
At the focus group we will ask your opinion on what is helpful in the resource, what needs changing and what is missing.
If you have any questions at this stage please feel free to contact Anna Miles at the University or me as follows:
Anna Miles Auckland University; email@example.com; 021 1371658
Tony Spelman PwP Inc; firstname.lastname@example.org; 021 233 6309
We look forward to welcoming you to a fruitful discussion about managing Parkinson’s medication on 13 August 2019.
Dr Anna Miles (Speech-language therapist – The University of Auckland)
Richard Hansen (Student Speech-language Therapist, The University of Auckland)
Angela Lambie (Pharmacist & Project Manager, Waitemata District Health Board)
Avril Lee (Pharmacist & Quality Improvement Specialist, Waitemata District Health Board)
Tony Spelman (Chair of People with Parkinson’s Inc).