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’. It is 6 years since I was diagnosed, so ‘6’ seemed a fitting response.

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. Anything else seems to be a box ticking administrative exercise with little value for the patient.

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

4 thoughts on “Time to Change…….”

  1. ♥️ Another one I relate to. Never really know what to answer. At my last neurologist appt 7 days ago both hubby & Doc concurred I have extremely high expectations of myself ( thus in others as well .. LoL my poor tribe). 🤷🏼‍♀️ It’s me. I have to say I don’t like to talk about my can’t do days and rather what I can do in my can’t do days. I’m difficult to treat with meds cause I don’t want anymore although love my levodopa! Thank u medical world for this. I DONT like my crazy reduced energy however I do ponder really soul nourishing stuff in my rest spaces.
    Miss u friend. See u next year! Getting my 2nd vaccine soon! ♥️ Xox

    Liked by 1 person

  2. Very interesting read Ali as always.
    As a medic I often wonder about the value of FU appointments for patients. Often they tick a box for the clinicians rather than benefit the patients. I often feel patients leave frustrated that their underlying concerns haven’t been addressed either due to a poor clinician not picking up on non verbal clues or lack of time (overbooked and over running clinics)etc.
    This is particularly true of cancer FU. The clinicians always felt the role was just to reassure the patient that their cancer was still in remission or stable however, the patients were often worrying about other things eg mental health issues, financial problems, psychosexual issues etc etc
    In cancer we have explored what patients wanted from FU. A new online system was explored and can be done initially online. The patient completes an on line form that covers 5-6 common problems faced by cancer patients eg symptoms that may suggest recurrence, mental health questions, financial problems related to treatment and living with cancer, relationship issues etc etc.
    The patient then submits the form and on receipt is directed to the correct health care professionals to address their issues. Not all require face to face. A telephone with signposting etc can help.
    It is becoming more commonplace in some areas and patients seem to like it. They are offered either traditional or this type of FU.
    To ask someone with Parkinson’s a simple 1-10 score for a single generic question – “how are you” seems ridiculous when Parkinson’s can affect a person so many different ways. Would it be possible to look at 5-6 main Parkinson effects and question them eg symptoms, side effect, mental health, cognition, relationships, finance etc. This could then direct the consultation so that the real problems are explored and would allow signposting the patient to people that could help.

    This may already be available or trialled.
    Just a thought …….

    Liked by 1 person

    1. Thank you for taking the time to give such helpful feedback. I can see a lot of merit in the approach you describe. Much of the feedback I’ve had from other people with Parkinson’s is the need for improved access to a multidisciplinary team of professionals.

      Like

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