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Patient voice

"I know what my body is telling me I need"

  • 1 Comment

Alun Morgan, 62, was diagnosed with Parkinson’s disease at the age of 49. He describes his contrasting experiences of nursing care during a short spell in hospital.

The patient

I’d been a secondary school teacher in Wales for 27 years when I was diagnosed with Parkinson’s disease in 1999. I had a lot of symptoms, including a frozen shoulder, my leg wasn’t under my complete control and my arm didn’t swing. My GP sent me to a specialist who said I had Parkinson’s.

I didn’t know anything about the condition or whether it could kill me. I tried different medications. Then a new drug gave me the ability to walk, but it does make me feel nauseous and tired. I’ve also developed dyskinesia, which means my body moves a lot, but this is more comfortable than staying rigid.

Two years after being diagnosed I left teaching, but I’m still busy. I work for Parkinson’s UK, give talks on the condition and read books on mathematics, which I used to teach. I try to do more than I should, but want to live life to the full.

Early in 2009, I had a urinary tract infection and spent a short time in hospital, where I experienced a huge contrast in nursing care on the two wards I stayed in.

While on the first ward, I explained to the nurses that, because I had Parkinson’s, when I want to go to the toilet I had to go immediately. They didn’t seem to understand this need. On one occasion I asked a nurse for a bottle - she said she would get one but didn’t return.

I wet the bed several times. One time, I had to drag my drip with me to get myself to the toilet. None of the staff really talked to me - it seemed like they were people cleaning up after me. They were so busy there didn’t seem to be time for individual care.

I needed to self-medicate because my condition didn’t fit in with the typical drugs round hospital regimen. If I don’t get medication at specific times each day, after about an hour I feel sick, my body seizes up and it can take five hours to recover. I have to count the minutes until I can wiggle my toes again.

I then moved to another ward. The ward sister allowed me to self-medicate and made sure my bed was near the toilet, which was thoughtful as on the previous ward my bed was about 30 metres away.

I live with this condition 24/7. I know what my body is telling me I need. Nurses have to listen to patients with Parkinson’s because we know what problems lie ahead for us - like going to the toilet and needing to take medication exactly on time. If nurses don’t listen to us, there are immense consequences for our health and wellbeing.

Expert comment

Mr Morgan’s experience highlights the problems people with Parkinson’s can face when admitted to hospital. They can have difficulties with movement - such as a shuffling gait and freezing when walking - and problems with non-motor problems, including urinary frequency and urgency.

Medication can help to reduce many of these problems. People live with the condition for many years, and, as different problems develop, new medications are added. Regimens become tailored to patients; they may need to take medication every hour.

Such individualised timings do not fit in with ward drug rounds. Medication may be prescribed at the wrong times, delayed or missed, and nurses are occupied doing other things, or forget. These disruptions can have a huge impact and it can take days, weeks or even months if disruption is severe for patients to regain control of their symptoms. They can lengthen their stay in hospital, opening up the potential for complications.

If nurses understand Parkinson’s and make simple adaptations, like allowing patients to keep and self-administer medication, and giving them a bed near the toilet, they can greatly improve their experience.

Learning points

  • Discuss patients’ regimens and ensure medications are administered at the correct time
  • Wherever possible, allow patients to keep and administer their medication in hospital
  • If self-administration is not allowed, speak to the pharmacy about a policy to allow it
  • Where self-administration is not possible, use reminders like an alarm in your pocket
  • Understand the variety of motor and non-motor symptoms and their impact

Lisa Brown is Parkinson’s disease nurse specialist, Medical Outpatients Department, Royal Derby Hospital.

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  • 1 Comment

Readers' comments (1)

  • George Kuchanny

    It is not only Parkinson's.
    As any nurse on the wards will tell you. A large part of the patient population has very individual needs. This is the bit that managers close their ears to. So 'time & motion' ways of zooming around wards to justify short staffing simply do not work.

    The private sector know this. NHS nurses know this. It is just the management who still seem to be in the dark about this critically important truth. The mantra at my local Trust is 'Exceptional healthcare, personally delivered'. It is a good one and not just a mission statement to be ignored.

    There really is no point in having degree qualified staff if you do not have enough pairs of hands around to assist with basic care.

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