Hi, I’m new here but just wanted to post about the difficulty I have had getting any advice in an urgent situation. I care for my 93 year old mum who has advanced Parkinson’s and Lewy Body Dementia. Yesterday morning the carers mentioned that the Rotigotine patches were finished and I breezily said, no problem, I ordered more last Wednesday so they should be ready to collect now. When I went to the pharmacy they told me the surgery had not responded to their request so then I contacted the surgery who seemed to think they hadn’t received the request. I made a new request for an urgent prescription and managed to get that by lunch-time yesterday. That’s when the problems started as none of the local pharmacies had Rotigotine patches in stock - they would have to be ordered and there was no guarantee when they would arrive. I asked them to order and then started trying to find out what I should do at 8 am this morning when the patch Mum had on was due to be changed. This is where I came up against a brick wall. I called 111 but they couldn’t help and said I need to speak to the GP - they would make an appointment for me for that evening. I waited all evening but no call. In desperation I started searching on-line, wondering if it would be ok to give Mum some Madopar capsules I had kept which are still in date. This morning I called the surgery at 8 am and was told a doctor would call me later - I tried to explain that it is urgent because mum may start to experience withdrawal symptoms but although the receptionist was sympathetic she seemed to be unable to speak to the doctor to prioritise the call. I then tried to contact the Parkinson’s Nurse Team which is supposedly there Monday to Friday but eventually I got someone who said they don’t work Wednesdays. I was getting really concerned by noon, when I had still heard nothing from anyone. Fortunately the pharmacy received the order and was able to dispense the patches by 12.30 so mum is now ok. The doctor finally called about 1 pm and I asked her whether it would have been ok to give mum the old Madopar capsules but she said she didn’t know - I would have to ask a neurologist. But because Mum is bed-bound she is no longer under the care of the neurologist. Although things have turned out ok I feel very let down by how little support and advice there was available when we needed it. I used to know someone who had dealings with the mental health services and he said they were ‘just a facade’ - giving the appearance of a service but nothing actually there in terms of meaningful support and that is just how I felt last night and this morning. I wonder if anyone else has had similar experiences or has any tips on how to get emergency advice if needed?
Hello Tanera,
We’re very sorry to hear of your difficulty getting your mum’s medication on time. Unfortunately this is not the first instance like this we’ve heard about. Fortunately we do have some resources we can offer you. First of all, have a look at this support services page of our website. Our support services | Parkinson's UK. Our main line is our helpline, on 0808 800 0303, staffed with friendly and highly knowledgable advisors who have done a great deal for our community members, but it is not 24/7 so you will find some back-up contacts in case you can’t reach them. And of course you’ve found the forum, but you should know you can use the search function to find archived discussions on the topic of your choice.
We hope these tools can be of use, and we offer our warmest welcome,
Jason
Forum Moderator