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I thought I would put my 2 pence in to potentially help with the questions that are being asked. I got diagnosed with ADHD last year when I was 30 it took 2 years for the review and then another 7 months to get prescription - the medication has changed my life in so many ways where I can follow through tasks as needed and it can take away the overwhelm and frustration of having to carry out daily things.
- What is your experience (or that of your patients) of accessing ADHD medication? You have to wait to collect it at least a couple of days and they want you to phone pharmacy prior to collecting it to see if it is ready, I have phoned 6 x in one day and the phone wasn't even picked up due to shortage in staff so when you try the method they want they get really antsy when you just turn up but what else do you do?
- Have you (or your patients) had experience of long waiting lists for ADHD medication? My experience was a 7 month wait and when there was a shortage I know a couple of people that had to go without
- What feedback have you (or received from your patients) with regards to overall experiences. Could you provide examples? You have regular meetings where the doctor can run late for the appointment and if you have ADHD there is nothing worse than having to wait or they tell you that you missed an appointment you never received
- What impact do you believe the following have on your (or your patients) health and wellbeing;
Waiting times for medication
It depends on how inundated the system is some people can wait weeks Frequency of prescriptions issued
Monthly
Ease of access (costs, timing, location, etc) for prescriptions and medication
All medication has to be picked up from the Hospital pharmacy which can be inconvenient especially if you don't work in town. It isn't open on a Saturday which can be difficult trying to get time out of work during Monday to Friday or if it isn't ready and you have to make another trip in to collect. Also, if you have a check-in about medication the latest appointment, they can do is 3pm so you have to either take a half day at work or leave early and make time up.
Kudos to my Doctor though as she said for repeat prescription just use the form save it and resend it every month ready to email which means you don't have to fill out the form every month you can keep it in sent and forward it on.
- Do you believe that the frequency of prescribing medication could or should be decreased and do you believe that the authority to prescribe medication should be expanded to GP's?
I think it should decrease so you can have at least up to 3 months' worth, as trying to go through the procedure of getting the medication for people who struggle to organise themselves so frequently then the hassle of having to try and obtain it. GPs should defiantly be able to prescribe it to make it easier to collect and it will take the strain off of the hospital pharmacy and it will make it more accessible for people who struggle to get into town.
- What ideas do you have, if any, that may help improve the situation (which could also assist the Panel in its recommendations to the Minister)?
More staff who are maybe ADHD themselves as they can relate to the situation as speaking to a neurotypical person can be difficult as they can make you feel disabled when you aren't it's just our brains work faster and in different ways. But also having different methods for people to help them adapt to making daily tasks easier rather then just saying have you thought about speaking to someone- as for ADHD people it can take a while to build a rapport and have a safe space. It is also making people more aware that there are different learning styles and adaptation. Some people can make notes some people make notes and forget and because ADHD is so diverse and people have different symptoms and struggles it isn't as simple as putting ADHD people into a box or a title.
I think making it less frequent to collecting prescriptions as that can be quite overwhelming in itself
Have a system that isn't changed or updated every 2 minutes as change is a struggle but also having to do something for yourself can be overwhelming. As the front part of the brain doesn't develop properly until you are 35 so our minds are not fully matured and we have regular meltdowns due to all sorts of things whether it be sensory, noise etc and it can take days to regulate emotions over minor inconveniences. We work best in pressure and survival mode.
- Are you aware of any shortage of ADHD medication on the Island?
Yes, that is why is can only be prescribed a month at a time. It has got slightly better because at one point it was every 2 weeks.
- Do you have any specific experience or ideas that you wish to share with the Panel which may help inform our review?
- Having to wait for prescriptions
- Not getting through to pharmacy and having to go in physically then make a second trip back
- Do a questionnaire for ADHD people with Yes or no answers to get a more specific answer and feedback
- Let GPs have access to helping people as there are more ADHD people then not and it will take the pressure off of the staff who are already trying there best
- The shopping where you can have quiet time helps - Shopping is my biggest dislike and someone who also has ADHD taught me to wear ear phones and to use the scanning machine at Waitrose so it lessens the interactions needed and the involvement of having to wait as long
- Help the island by giving them access to more help whether it be groups or adaptations in environments whether it be parking or streamline the system so it isn't so complicated