Advice for patients needing admission

Those with Parkinson’s disease and the conditions that cause parkinsonism (slow and rigid movements, tremor) who are going into hospital may worry about managing their condition throughout their stay.  

Common concerns include the fear that hospital routines may overlook the condition or that hospital staff may fail to accommodate individual needs. These concerns are common to many patients and are dealt with in the Trust information leaflet on coming into hospital, which you should read. The notes below are intended to supplement this. 

Day case elective procedures have the advantage that medication routine is less likely to be disrupted. It is always a difficult trade off around issues with convalesce as this is likely to be more prolonged than in other patients and to a degree more risky as general carers can not know all the potential issues around your condition and may make assumptions based on other more common conditions.  

Prior to admission 

Most hospital staff will not know as much about Parkinson’s as you do. Talk to those coordinating your admission about particular concerns regarding your stay. If you are unsure who this is, ask for the Charge Nurse when you arrive at the ward. They can contact the East Kent PD inpatient liaison service if necessary.  Suggestions include: 

  • Have a list of your medications, including the dosage and times for each dose. Include information on how these medications are taken: for example, with a glass of water or without food. If you have had a bad reaction in the past to a medication this should be noted, and the reason. If you are participating in a drug trial, take the letter of explanation. 

  • Find out if you can administer your own medications while in hospital. If not, discuss the alternatives, and how you will get your medications on time. For example if you use a medication timer or alarm, it should be usual for you to continue to use it during your hospital stay so you can ask for your medication when you need it.  

  • Consider having available written information on symptoms and issues specific to you: for example, speech difficulties, constipation or activities you need help with. If you have a particular nurse assigned to oversee your care, give them a copy of this information.  

  • Some people with Parkinson’s experience motor fluctuations or ‘on–off syndrome’. This is the sudden appearance of symptoms resulting from medication wearing off. If this happens to you, inform the hospital staff, so they can care for you during these times.  

  • Some people with Parkinson’s use mobility equipment. Discuss your needs in advance and plan for recovery. Make sure you clearly label your own equipment.

  • Take all medications with you. This is because pharmacy can not have in stock all possible drugs. (There is a green bag scheme for emergency admissions, to remind ambulance crews to collect all medications, when possible. This would not be possible in some care home situations or where medications can not be identified by labelling).

During your stay 

Hospital staff look after many patients, so it helps to be tolerant. However, don’t be embarrassed to calmly remind staff about your needs. The following points may help:

  • Appreciate that stress may worsen symptoms of Parkinson’s and that a hospital stay is a stressful event.  

  • A close family member or friend can be a support person or advocate on your behalf.  

  • You are likely to need physiotherapist or occupational therapist (or both) assessment during your recovery. A hospital stay increases the risk of falls for people with Parkinson’s and the nurses will find it helpful if you discuss issues such as how close your hospital bed can be to a bathroom and if you need an aid such as a chair in the bathroom for your use. 

  • Tell staff if you have a special diet: for example, if you require pureed foods.  

  • Speak with the nurse in charge or medical consultant if you feel that staff are not managing your Parkinson’s. If you have to talk to them ‘on the fly’, it is often useful to arrange an interview at a specific time rather than dealing with all issues when they are likely to have interrupted other duties to speak to you.

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