Be your own best advocate…

For years I worked as a Social Worker and I often had to advocate for my patients and their families in various circumstances. When people find themselves needing significant health support and hospitalisation, they can feel that they have very little choice. It has always been important in my eyes to advocate for the choices they can make, so that they don’t feel completely powerless.

I may have retired from my profession, but I am still a Social Worker in my head and in my heart. There is one area that I always taught student Social Worker as being incredibly important and that is self-care. In my view, if you do not prioritise looking after your own needs, then how can you expect others to do so. Less experienced staff and students naturally look to those of us with experience in order to model their behaviours on what we exhibit.

Even in retirement there are times when we need to be our own best advocate. Since retiring, I have been volunteering in an ‘Op Shop’ or ‘Charity Shop’ as they are known in the UK. I have been working with a lady, who for some reason seems to have taken against me. From day one, I had to fend off her biting retorts and barking orders at me. I tried to be friendly and engage her in conversation, but my efforts fell on stony ground. In my last stint I had been at work maybe 10 minutes when she started again rudely telling me what to do and generally having an unpleasant manner. I was facing 4 hours of discomfort and unpleasantness. I decided I had had enough and went to speak to the boss. I told her how since the first day my co-worker had been rude and abrasive towards me. I told her I was used to working in an environment where I was respected and could not and would not work with someone who treated me so rudely. She told me that she thought this person ‘didn’t mean anything by it’ to which I replied that I felt that she disliked me for some reason and that it was making it unpleasant to come to the shop and volunteer. I was contacted today and asked if I would mind working on a different day and I agreed to do so. I had hated the feeling of ‘what am I going to get abused for today!’ I am pleased that I stood up for myself and didn’t just put up with the situation as it was getting in the way of enjoying my volunteer role. I have had a bullying situation in another role and I won’t put up with it again.

The other situation currently is my lack of follow-up from my Neurologist. I had been told at diagnosis that he would review me once a year. I rang and asked his nurse when I would get an appointment and when asked when I last saw him, I said on the day of diagnosis. She said she would look into it. I also pointed out that I had asked her previously to put me on a list to see him and she admitted she had forgotten to do so.

So, today I went to see the locum standing in for my usual GP. I told him about the lack of follow-up from my Neurologist and that I had not been seen since diagnosis. I also said that I had read posts from others with Parkinson’s and they said that they relied on their GP to support them and advise them rather than expecting to see a Neurologist. As I said to the GP, ‘No offense to you or my regular GP, but you are by definition a generalist and not a specialist in the field of Parkinson’s. You cannot be expected to know everything about Parkinson’s’. He agreed that was the case and that Neurologist working every day with Parkinson’s patients had the knowledge and experience to better support those of us with the condition. He agreed to write to the specialist and request a review.

I want to see my Neurologist and talk to him about some subtle changes in my body and whether they are because of Parkinson’s. I need to know if he thinks my Parkinson’s has ramped up, where previously his nurse described me as ‘a slow burner’. I know it is probably not really possible for him to say how long before things get really bad for me, but I would like to have a conversation about how he sees my progression compared to four years ago. This might give me an idea of what items on my bucket list need to be attended to while I am still able to do them.

So, when it comes to advocacy, I am my best support and I will continue to be the ‘squeaky wheel’ and perhaps then he will find a slot for me to see him and find out where he sees me in terms of stages of progression.

Hopefully, I will see him soon.

It’s well overdue.