During your stay in hospital

It's important that hospital staff understand your condition, and that you feel comfortable and able to manage your symptoms.

Your named nurse

When you are admitted to hospital, you will be given a named nurse. They may also be known as a key nurse or primary nurse. They are responsible for your care during your stay.

Your nurse will explain processes to you and what you can expect. You will also be fitted with an ID bracelet that must be kept on until you leave hospital.

You should tell your nurse about your usual routine and any specific needs you have, such as help with communication or mobility. Ask to speak to your named nurse’s deputy as well so they are aware of your needs when your named nurse isn’t on duty.

Your named nurse may be able to arrange for information about your Parkinson’s and your drugs to be included on the notes at the end of your bed. This will make night nurses and other ward staff aware of your needs when your named nurse is not on duty.

You may also wish to provide additional information about your needs, likes, dislikes, and preferences, so staff can build up a picture of who you are.

You should include anything that is important to you. What makes you anxious? Do you have any religious or cultural needs that should be observed? The information you provide can be included in your ‘care plan’.

The Alzheimer’s Society has produced a simple and practical leaflet called This is me, which is designed to provide information about the person going into hospital. You may find this is a useful starting point for thinking about the type of information you’d like to share.

If you are not able to, you should also ask your friends and family to tell your Parkinson’s nurse that you have gone into hospital. Your nurse can then contact the hospital to ensure they have all the information they need about your treatment.

If you don’t have a Parkinson’s nurse, you may like to ask if there is one based at the hospital and if they can be told about your stay.

Equipment

At home, you may use equipment to help with daily tasks. You should check with the hospital if you can bring these with you. Hospitals will normally have a policy on this. You can discuss this at your pre-admission assessment or during admission with your named nurse.

If you can take your own equipment with you, label it clearly. You may want to add valuable pieces of equipment to your household insurance. If you can’t take your own equipment, check suitable alternatives will be available.

You may find that using new pieces of equipment in hospital makes your stay easier, even if you do not use them at home. New equipment should only be used under the guidance of a healthcare professional, such as an occupational therapist.

Sleeping

Wards can be busy places, even at night. 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. Do you need help turning over in bed? Do you need to get up several times during the night to go to the toilet and do you need help to do this? Do you need a backrest or plenty of pillows?

Eating and drinking

If you usually have a special diet – thickened fluids, pureed meals or PEG feed for example – this will need to be ordered through the hospital dietitian. You should discuss any specific needs at the pre-admission assessment.

You should also let ward staff know if you use any special equipment to eat and drink with. If you experience ‘on/offs’ and need help at meal times, make sure the staff are aware of this, so they don’t just assume you aren’t hungry.

It’s important to eat well while in hospital because this will help to fight off infection and maintain regular bowel and bladder function.

The type of food you get in hospital may be different to what you usually eat. You may find it useful to order small meals from the ward menu and ask your friends and family who visit to bring in extra snacks.

Using the bathroom

It’s important to discuss any concerns you have about using the bathroom at the pre-admission assessment. These may include whether you usually use a handrail or a raised toilet seat, and whether you can get to the toilet without help.

If you experience bladder and bowel problems such as constipation or bladder incontinence, tell the hospital staff so they are aware.

Walking around

Floor surfaces, furniture and the distances you need to walk will all be different in hospital. There may also be extra people and obstacles to get around.

You may find these things make it harder to move around the ward on your own. Other people find their mobility improves in hospital because there is more space to move around.

It may be possible to be given a bed that is closer to the bathroom. Using equipment or asking the ward staff to help may also make it easier for you to stay mobile. If you experience ‘on/offs’, let the staff know you may need more help when you are ‘off’.

If you are having specific problems with your mobility, a physiotherapist may be able to help.

Communication

If Parkinson’s affects your ability to communicate, make sure the hospital staff know about this.

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. Some people may take a while to get used to your speech patterns.

Lack of facial expression may make staff think you are not responding when they ask you something, so you may find it helpful to explain to staff that you experience this symptom.

Tell staff you need time to speak and answer their questions. Make sure you know how to operate the nurse-call buzzer to get the ward staff’s attention and position it near enough to you so you can use it even if you are ‘off’.

If you use communication aids, bring them to the hospital. If there are times of the day that are particularly good or bad for you, make sure you talk about this with your named nurse. If you are having particular problems with communication in hospital, you may benefit from seeing a speech and language therapist.

Benefits payments

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 are 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.

Managing your medication

Can I be responsible for my own medication in hospital?

This will depend on the hospital you are going to. Some hospitals allow patients to bring in their own medication when they are admitted, but only if the medication is in its original packaging – blister packs or pill boxes are not used in hospitals.

If you have time, contact the hospital to find out about their self-administration of medication policy. If your admission to hospital is planned, you should discuss whether you can bring your own medication at the pre-assessment appointment.

If you are able to bring your own medication with you, find out about how this works practically on the ward by asking:

  • Where will my medication be stored on the ward?
  • If medicines need to be locked away on the ward, who will have the key?

Who will update the drugs chart when I take my medication?

On the ward, keep taking your medication on time. Your Parkinson’s nurse may be able to help you arrange this. If you don’t have your own Parkinson’s nurse, ask if there is one based at the hospital.

They may also be able to find out for you if the drugs you take are stocked in the hospital pharmacy. This will alert pharmacy staff if they are not already in stock.

Make sure your healthcare team is aware you are self-administering your medication and work with them to avoid over-medicating. If at any point you feel too unwell to keep taking your medication, make sure you tell a member of staff on the ward as soon as possible.

If you can’t bring your own medication into hospital, you need to make sure you get your medication on time. Don’t be afraid to remind staff each time your tablets are due and stress to them that the timing of your medication is important for the drugs to control your condition effectively.

The timings of your medication may be different from the usual ward drug rounds. One solution may be for the nurse to have a pill timer in their pocket that rings when it is time for your medication.

You could also order a free Get It On Time washbag to use if you go into hospital. It includes tips for preparing for hospital stays and a medication record book.

Telling staff about the side effects of your medication

If you experience side effects from your medication, it is important ward staff know about them.

‘On/off’

This is a side effect of Parkinson’s medication that can cause confusion and misunderstandings in hospital. ‘On/off’ usually happens to people who have had Parkinson’s for several years and their medication does not last as long as it used to. This causes their symptoms to recur before the next dose is due.

  • Being ‘on’ describes when a person’s symptoms are controlled and they are feeling at their most capable.
  • Being ‘off’ is when Parkinson’s symptoms recur and are at their most debilitating. Some people have described this as like a light switch being turned on and off, or like a yo-yo going up and down.

If you have ‘on/offs’, make sure the staff understand that your ability to do things will change during the day. You may need more help when you are ‘off’ than you do when you are ‘on’.

What if I miss a dose of medication during my stay in hospital?

Share your concerns with the senior nurse on duty and explain how important it is to get your medication on time.

Be clear about the impact the missed dose had on your condition. Ask them to report the incident as a drug error and discuss how they will make sure it doesn’t happen again.

If you don’t feel comfortable having this conversation yourself, you could ask a family member or friend to talk to staff on your behalf. Your Parkinson’s nurse may also be able to help you.

You may find it useful to keep notes on who you spoke to, when you spoke to them, what you discussed and what was agreed. After the meeting, follow up with the staff to make sure what was agreed has been done.

Never feel you are being difficult. Remember, failing to give you your drugs on time makes extra work for the ward staff.

Surgery and anaesthesia

Anaesthesia

Anaesthesia means ‘loss of sensation’. Drugs that cause anaesthesia are called anaesthetics.

Anaesthetics are used to put someone to sleep for surgery, and stop you feeling pain and discomfort during the procedure. They work by blocking the signals that are sent along your nerves to your brain, which keep you awake and aware.

Anaesthetists are responsible for giving you the anaesthetic before your surgery, ensuring you are safe and well during the surgery and for managing your pain after your surgery has finished.

There are different types of anaesthetic, including the following:

Local anaesthetic

This numbs a small area of your body, so you can’t feel anything, but you are awake throughout the procedure.

Regional anaesthetic

This can numb a larger or deeper area of the body. You will be awake during the procedure and not be able to feel pain, although you may still feel sensation such as pushing or movement.

General anaesthetic

This will make you totally unconsciousness and you will be unaware of the surgery. It is usually used for long operations or ones that may be very painful.

Sedation

This is medication that makes you feel sleepy and relaxes you physically and mentally. It can be used to keep you calm during minor, painful or unpleasant procedures.

Different types of anaesthesia can be used in combination. For example, a regional anaesthetic can be used with a general anaesthetic to relieve pain after an operation.

Meeting your anaesthetist

You will usually meet your anaesthetist on the ward before your surgery. It is very important that your anaesthetist knows you have Parkinson’s and what medication you take for the condition.

Some anaesthetics may make Parkinson’s symptoms worse or interfere with Parkinson’s medication. The anaesthetist can plan your care appropriately around this.

When you meet, the anaesthetist will go through the questions you answered at the pre-admission assessment. They will discuss your Parkinson’s symptoms with you and how they may affect you during surgery.

You will be able to discuss with them which kind of anaesthetic is most suitable for you and what pain relief you may need afterwards. The anaesthetist will also discuss any risks or side effects of the drugs you will be having.

During the meeting, you should try to ask any questions you have about the anaesthetic and clarify anything you are unsure about.

Can I keep taking my Parkinson’s medication right up until the time of surgery?

It’s important you can keep taking your Parkinson’s medication as close to the time of your surgery as possible, and as soon as possible after the operation.

You may be asked not to eat or drink for a period of time before the operation (‘nil by mouth’). But you are usually allowed to keep taking your medication with a few sips of water during this period. Your anaesthetist will discuss plans for this with you before your operation.

If you have Parkinson’s, your surgery may be put at the start of the day’s operating schedule. This can mean that the risk of the surgery being cancelled is lower, for example if other procedures take longer than expected.

Organising your medication regimen is also easier if you know what time your surgery will be in advance. It is not always possible to arrange this though, so you should discuss this with the anaesthetist. You should also talk about what you should do if your operation is delayed.

Medication may also be given during surgery if the operation is taking longer than planned and there is a risk of missing a dose. For example, if you usually take levodopa, it may be possible to give the drug using a tube that goes into your stomach. You should discuss this with your anaesthetist before your surgery.

Parkinson’s drugs and surgery

Apomorphine

Depending on the procedure, you may not be able to take oral medication after surgery. It may be possible to use different drugs, such as apomorphine, which is a strong dopamine agonist. It can be taken by intermittent injection or via infusion, using a pump.

Your healthcare team should discuss the possibility of being prescribed apomorphine after surgery with you before you go into hospital. Your Parkinson’s specialist will also be involved in the decision.

If this is not discussed with you, ask your healthcare professional to talk to you about apomorphine.

Dopamine agonists

If you normally take oral dopamine agonists and are nil by mouth due to surgery, you may be switched to a dopamine agonist patch. The patch is applied to your skin and, once in place, lasts for 24 hours.

It will deliver the same dose of medication as you would normally take orally. Your specialist can advise your surgical team about this.

Parkinson’s symptoms and surgery

Low blood pressure

Some people with Parkinson’s may experience problems with low blood pressure.

Postural hypotension (also known as orthostatic hypotension) is a large drop in blood pressure when standing or changing position, such as standing from a seated position.

If you experience this symptom, you should tell the anaesthetist. Having Parkinson’s can cause people to have higher blood pressure readings when lying flat.

Involuntary movements (dyskinesia)

Dyskinesia are involuntary movements of the arms, legs, body or hands that can’t be controlled. It is a side effect of some Parkinson’s drugs when they have been used for a long time.

Involuntary movements may affect procedures such as x-rays, scans or radiotherapy, when you need to keep still.

Radiographers usually have techniques such as putting foam wedges in place to help overcome this, but it is important to talk to your healthcare professional about your movement problems before any procedure.

Sometimes for CT or MRI scans, you may need to have a general anaesthetic or be sedated so you are able to keep still.

If you are having a dental operation you may wish to contact the British Society for Disability and Oral Health. This organisation has a special interest in treating people with disabilities and may be able to advise the dentist on ways to overcome the problem.

Saliva control and swallowing problems

Some people with Parkinson’s develop problems controlling their saliva, which can lead to drooling or dribbling. The medical term for this is sialorrhea.

When you have Parkinson’s, the natural tendency to swallow happens less often. We all swallow many times a day, but the rigidity and slowing down of movement that people with Parkinson’s experience may reduce this. If you swallow less, saliva can pool in your mouth.

If you experience these symptoms and are having a general anaesthetic, you may need to have a tube put down your throat to help you breathe. This is called intubation. This allows the anaesthetist to make sure your airway stays clear during the surgery.

Speak to your healthcare professional if you have any concerns about saliva control or swallowing problems during surgery.

After surgery

Deep brain stimulation is the main type of surgery used to treat the physical symptoms of Parkinson’s. It doesn’t cure or slow down the progress of Parkinson’s, but it can help some people control their symptoms. 

It involves inserting very fine wires, with electrodes at their tips, into targeted parts of the brain. The wires are then connected to a battery-powered pacemaker-like device called a neurostimulator, which is implanted under the skin of the chest.

The device contains batteries and electronics that create an electric current. The current stimulates the targeted areas of the brain and has an effect on a person’s symptoms.

Deep brain stimulation is only carried out at certain centres in the UK. Surgery can take place under general or a regional anaesthetic, depending on which surgical centre you are at.

Like any surgical procedure, you will meet your anaesthetist before your operation and they will talk to you about the anaesthetic and what you may expect after the surgery has finished.

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Last updated October 2014. We review all our information within 3 years. If you'd like to find out more about how we put our information together, including references and the sources of evidence we use, please contact us at [email protected].