It's been an eventful week. On the 15th February 2024, I received an email from Norfolk County Council's Blue Badge Unit to let me know that my application had failed. The refusal was summarised in three bullet points:
- You do not have a level of qualifying disability or functional loss to be eligible for a Blue Badge.
- You state that you are able to walk in excess of the Department for Transport’s eligibility criteria.
- The symptoms of your condition(s) are variable in nature and therefore do not have a substantial and permanent impact on your mobility.
I should explain that a blue badge in this case refers to a paper disc that one can display in the windscreen of one's vehicle to indicate a disability that qualifies for use of disabled parking spots in the UK. The first email I have from the Blue Badge Unit is from September 2023 although the saga has run on longer than that. I hope you will understand the frustration that led me to tweet:
Just got my Blue Badge application turned down by @NorfolkCC because:
— Matt Couchman (@Tremr8) February 15, 2024
"The symptoms of your condition(s) are variable in nature and therefore do not have a substantial and permanent impact on your mobility."
I've just got a bit of Parkinson's. Wait a bit & it'll blow over.
Having done that I set about formulating my appeal. The main point I wanted to make was that Parkinson's Disease is indeed variable in nature but that does not prevent it from having a substantial and permanent impact on my mobility. It feels strange to have to make that point to a unit that deals looks at disability claims as their daily business. That the symptoms of Parkinson's are variable runs through this blog like the lettering in a stick of rock. Using that criteria, any application by someone with PD or Muliple Sclerosis could be refused.
It is nearly eight years since my initial diagnosis. Although my walking was affected during the first six years, I didn't apply for a blue badge because I didn't feel like I needed it, I was happy to walk the extra distance and I didn't want to abuse the system. My right foot would lag a little causing a limp that might be more pronounced depending on the day (that's the variability) and how close I was to needing my next dose of Levodopa. A couple of years ago, I started to notice that there were occasions where my right foot would start to turn outwards while I was walking. As this becomes more pronounced, my right leg stiffens to the point where it becomes impossible to move.
The first time I remember that happening was when I tried to take a short walk to the country with my daughters during lockdown. I began struggling after a quarter of a mile and after half a mile, it was clear that I couldn't go on. We turned around and began the stagger home. It was slow and frustrating and I felt bad that what was meant to be a nice walk in the country had become a slow plod around the estate that we had become so familiar with during lockdown.
My daughters asked if I could run. I laughed at the idea but, to my surprise, found that I could run better than I could walk. It only worked for a short distance and I didn't push my luck too far. If the stiff leg thing sets in mid-stride, I imagine the resulting fall could be quite nasty.
Over the rest of the journey, with encouragement from my daughters, I tried hopping on my good leg (good but tiring), hopping on my bad leg (still good but still tiring) and skipping (very good). The journey home was a lot longer than normal but a lot faster than if I had soldiered on with normal walking. I got quite carried away with the skipping until, understandably, the girls' embarrassment became too much to bear and they asked me to stop.
Are the neural pathways that we use for more strenuous activity less susceptible to the effects of PD than those that we use for walking? Or could it be that continual use of the same pathways leads to some sort of congestion? I don't know.
Exactly a week later, I set out for a cycle ride. My Parkinson's allows me to cycle for longer than I can walk but, given my experience the week before, I was surprised and elated to find myself 26 miles away in Sheringham a couple of hours later. The plan had been to catch the train back but I felt so good that I decided to cycle back as well. Fifteen miles into that journey, I was saddlesore, my feet and hands were numb and I wistfully dreamt about how I could have been sat comfortably at home by now if I hadn't been so foolhardy. Eventually I made it though.
When the neurology nurse asked how I was getting on at my next appointment, I mentioned the two episodes, partly because I thought they were interesting and partly because I am a big show-off. We chatted about it bit and I forgot about it.
That email from the blue badge unit from 11th September asked for:
any applicable letter, report or summary you have received from your surery, doctor, hospital or another health professional with information regarding your medical conditions and their impact on your mobility, or information about any treatment you are receiving.
I could only find one letter that mentioned my mobility problems but it went on to say that I had cycled fifty miles in a day the following week. Me and my big mouth. My leg freeze has become much more frequent and pronounced in the past couple of years but I had no documentation to say as much. I asked my GP for a letter. She agreed that I needed a blue badge but explained that it was expensive for the surgery to write letters but they would respond to letters from another agency. I explained this to the BBU who replied that they don't communicate with medical professionals directly but that I could try and apply without that documentation. That was what I did. I received a rejection the same day.
You have not provided sufficient medical evidence which confirms that you meet the national criteria for a Blue Badge.
At my next appointment with my neurologist, I mentioned that I was having movement problems and that it would be useful for my blue badge application if he could mention it in his notes. He kindly obliged and so, when my copy of his notes arrived a couple of weeks later, I was able to resurrect my claim. The tone and structure of the questions make it clear that they are looking for absolutes in the answers which is at odds with my experience of Parkinson's. Nevertheless, I tried to be as honest as possible. In hindsight, it probably wasn't a good idea to say that I walked like a pirate when asked about my posture and gait but, in my defence, it did ask me to be as descriptive as possible.
We're back to where we began. It's not the first time in this process that I've felt like I'm going in circles. The latest correspondence from Norfolk County Council asks for more medical documents to back my appeal.
One of the replies to my tweet was from Andy Trigg of BBC Norfolk who kindly offered to shine a light on the topic on the radio. He interviewed me on 22nd February which was how I came to the bewildering experience of hearing myself alongside a feature about Taylor Swift and an interview with the BBC's former technology correspondent, Rory Cellan-Jones, who talked eloquently about his experience of bureaucratic difficulties faced by people with Parkinson's on the Radio Norfolk Breakfast Show. It occurred to me that, if Norfolk County Council had decided to set their rejection email to music, Taylor Swift's Shake it Off would have fit the bill perfectly. Many thanks to Andy, Rory and Parkinson's UK for championing the cause so effectively.
My story is far from an isolated case. It is stressful and demeaning to have to jump through so many hoops to prove disability despite being diagnosed with a condition that brings with it multiple disabilities that worsen over time. There is an online petition to make people with Parkinson's Disease automatically eligible for Blue Badges. That would obviously help enormously but, failing that, there seem to be a couple of smaller steps that could be taken that would simplify the situation for all concerned.
The way that the application process defines disability needs reassessing with the variable nature of neurological conditions such as PD and MS borne in mind. The fact that I am able to move well sometimes shouldn't prevent me from getting help on the occasions where putting one foot in front of the other is a real struggle.
In an age where there are so many ways that we can contact each other, why does the whole process have to wait for the applicant to gather letters that we hope will correspond to what the council requires? What has taken nearly six months could have been condensed into weeks, days or even hours if the council had emailed or telephoned my neurologist or GP.
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