During your stay in hospital

When you’re admitted to hospital, you may be given a named nurse. They are responsible for your care during your stay. This is more likely if you’re a day patient.

If you’re staying in hospital overnight or for a longer period of time, it’s likely that several nurses will care for you. For example, the day nurse will hand over your care to another nurse at night. You may also move wards during a stay.

It’s important to tell each nurse who cares for you about your usual routine with Parkinson’s and any specific needs you have. Tell them how vital it is that you get your medication on time. 

Your admissions nurse or named nurse should arrange for information about your Parkinson’s and your drugs to be included in your bedside notes. This will make the nursing and other ward staff aware of your needs across the day and overnight.

It might also help to ask for a sign to be put above your bed, stressing the importance of getting your medication on time.

At home, you may use equipment to help with daily tasks. You should check with the hospital if you can bring these with you. You can discuss your equipment at your pre-admission assessment, or with your nurse during admission.

Using equipment or asking the ward staff to help may also make it easier for you to move around.

Wards can be busy, even at night. There may be noises around you that you find distracting. There can also be more lights on than you would be used to at home.

Try to stick to your regular sleep routine. If ward staff know your usual routine, they can try and accommodate it as far as possible.

Let the ward staff know about any specific needs you have for sleeping. This could include help turning over in bed, or getting up often during the night to go to the toilet. If you need extra pillows or blankets, staff can arrange this for you.

When you’re admitted to hospital, staff will ask if you have any special dietary requirements. This includes any eating or swallowing issues that you experience as part of your Parkinson’s symptoms. For example, you may need thickened fluids, pureed (softened) meals or a PEG feed (feeding tube). You should also let ward staff know if you use any special equipment to eat and drink with.

If you have any dietary needs related to your medication, you should talk to a hospital dietitian so you can plan ahead. For example, if high-protein meals affect how well your body absorbs levodopa. This will help you continue with your medication routine. You can also discuss anything specific about your dietary needs at your pre-admission assessment.

If you experience ‘on/off’ periods and need help at meal times, make sure staff are aware of this. During ‘off’ periods, certain symptoms, such as stiffness or slowness of movement, might make it harder for you to eat. Staff might not realise this and assume you’re not hungry.

It’s important to eat a healthy and balanced diet during your hospital stay. This can help prevent infection and maintain good bowel and bladder health.

Bladder and bowel problems, such as constipation or poor bladder control, can be more common in people with Parkinson’s. Make hospital staff aware of any issues so they can help you.

If Parkinson’s affects your ability to speak or communicate, make sure the hospital staff know about this. This can help them give you more time to speak and answer their questions. A soft, quiet voice may be difficult to hear on a noisy ward. You may also have to talk more than usual, which may make your voice tired.

If you use communication aids, bring them to the hospital to help you.

If your symptoms cause your facial muscles to become stiff, a lack of facial expression may make staff think you’re not responding when they ask you something. You may find it helpful to explain this to staff if you experience this.

If there are times of the day that are particularly good or bad for you, make sure you discuss this with your nurse. For example, if your speech is quieter or less clear when you’re feeling tired, or when your medication wears off.

Some people with Parkinson’s may experience hallucinations or delusions. They usually happen as a side effect of your Parkinson's medication. But in some cases they may be a symptom of your Parkinson's, or another condition, such as dementia.

If you experience these symptoms, you should let the ward staff know, so they can support you.

Going into hospital may affect your benefits payments. This will depend on how long you spend in hospital and what benefits you receive.

If you're receiving benefits and are admitted to hospital, you need to notify the Department for Work and Pensions, or ask someone to do it for you.

For more information on rights and benefits, you can contact our dedicated employment and benefits adviser on the Parkinson’s UK helpline on 0808 800 0303 or email us.