Time to Change…….

At an out patient appointment recently, I was asked how I had been feeling on a scale of 1 – 10.

1 = As bad as it gets

10 = As good as it gets.

I pondered.

It had been 398 days since my last appointment. A lot of things have happened during this time. Do I try to review the whole of the last 398 days or just the last month or so? Do I simply assess my physical state or should I include my emotional, cognitive and psychological states? If so, do I rate these equally or do they each carry a weighting? Should I base my assessment on how I feel before or after I’ve taken my medications?

I pondered some more.

The question assumes both the doctor and the patient are interpreting the scale in the same way. If a ‘1’ is as bad as it gets and a ’10’ as good as it gets, then it should be fairly straight forward. Except, a ’10’ in my pre Parkinson’s days is very different to a ’10’ in my with Parkinson’s days when my expectations have changed considerably.

How complicated can I make a seemingly simple question? I am clearly overthinking things but I can’t help think that’s because it’s the wrong opening question. Not one to cause a fuss, I pondered a little more, determined to give a considered response.

I was still pondering when I sensed the doctor was beginning to think that I hadn’t understood the question. I could sense her making a mental note that the cognitive impairment picked up by the neuropsychologist recently might be worse than first described.

I remember my response to the same question 398 days ago because I recall thinking of Len Goodman on Strictly Come Dancing, as I tried hard not to imitate his voice and intonation when I said ‘7’.

Enough pondering. Time for some logic. If I scored a ‘7’ last year and my progressive degenerative neurological condition has had 398 days to do it’s thing, the answer must be lower than a ‘7’. However, if my answer is too low, this limits my options if I am asked the same question at future appointments and would probably send alarm bells ringing about my psychological health. I rule out a ‘1’, ‘2’ or ‘3’.

That narrows it down to a ‘4’, ‘5’ or ‘6’ and so I randomly opt for ‘6’.

The doctor seemed delighted by this. Or perhaps she was simply delighted that I had answered the question and she could move on.

‘Did I sleep well?’

‘No’.

‘Was I anxious?’

‘No’.

‘Depressed?’

‘No.’

‘Did I have uncontrollable impulses to spend money, shoplift, gamble, take drugs, or to have sex, eat or drink to excess?’

Apart from a chocolate addiction I’ve had all my life, I answered ‘No’.

It is well recognised that a side effect of some of the drugs that are prescribed to help control the symptoms of Parkinson’s can cause impulse control disorders with devastating consequences. I am asked about these at every out patient appointment. This I understand but I wondered why sleep, anxiety and depression were chosen as three symptoms to enquire about when there are at least another 40 symptoms that can be equally troublesome? They did not make my top three ‘must discuss’ symptoms either this year, or last. We chatted briefly about my medication. This wasn’t on my ‘must discuss’ list either.

With the formalities out of the way, I was ready to ask one of the questions from my carefully prepared ‘must discuss’ list, when the doctor stood up and gestured to me to do the same. She was clearly ending the consultation. As she ushered me to the door, she said, ‘you seem to be doing well, all things considered, keep taking the medication and we’ll review you in another year.’

Having worked in the NHS for over 30 years, I understand the pressures of continually increasing demand and limited resources. I also know that as these resources are so limited, it is even more important that we learn to use them effectively and efficiently. To be fair, I have had some excellent consultations in the past six years as well as some very poor ones.

Surely the first question at each out patient consultation should be ‘What do you most need my help with?’ Time is short, patients like me are prone to pondering and rambling. Parkinson’s is different for each person. The symptoms, their severity, their frequency, their response to medication varies significantly from person to person. It therefore follows that each patient is likely to have differing and very individual concerns. The challenge for the health care professional, with perhaps 20 minutes in which to share their expertise, is to understand the key issues from the patients perspective as quickly as possible to allow time to usefully explore them.

So, I’m delighted to be part of a working group, looking at improving services locally for people with Parkinson’s. An initiative involving health care professionals, managers and people with Parkinson’s. I’m encouraged that the need for improvement is recognised. I’m encouraged that those of us living with Parkinson’s have been asked to get involved. I’m encouraged that change is on the agenda.

Images Source: Clipart Library