Frequently asked questions about going into
hospital
Going into hospital can be an anxious time for anyone. If you have Parkinson’s, you may
have additional concerns that will increase your anxiety, such as being cared for by people
who may not be familiar with your condition.
There are two ways of being admitted into hospital – one is through a planned (sometimes
called a ‘booked’) admission, and the other is as an emergency. The admission may be
related to your Parkinson’s or it may be for another reason (such as a hip operation).
In either event, your Parkinson’s will be an important consideration for both your nursing
care and medical treatment. If you have a pre-planned admission you may have some time
to get prepared, but it is worth also thinking about planning what you would need if you had
to have an emergency admission.
How can I prepare for going into hospital?
It can be helpful to write a list of your medications, dosages and the times you take
them, and other considerations your medical team should be aware of, such as who to
contact in an emergency, the name of your doctor and any other professionals involved
in your care.
Keep your list in a safe and accessible place, for example in your wallet or handbag.
You could also consider leaving copies with members of your family or with your carers.
The ‘Going into hospital’ form at the end of this document can help you to do this.
You may consider ordering a free Parkinson’s UK alert card – a plastic credit card that
you can show healthcare professionals which explains that you have Parkinson’s. See
parkinsons.org.uk/content/parkinsons-alert-card for more information.
You could also order a free ‘Get it on time’ wash bag to use if you need to go into
hospital. This helps you to show ward staff how important it is that you get your
medication on time. The bag comes with tips on preparing for hospital stays, a
medication record book, a card to put by your bed and a reminder slips to alert staff that
you have Parkinson's. See parkinsons.org.uk/content/get-it-time-washbag for more
information.
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How do I make sure I get my medication on time when I’m in hospital?
In the event of an emergency admission, it is essential that those looking after you are
made aware of your condition as soon as possible. If you have a document explaining
your drug regimen, you can show this to all of the healthcare professionals looking after
you, rather than repeatedly answering the same questions.
If your admission is planned, many hospitals hold pre-assessment clinics. At these
clinics, you will give your personal details and medical history, undergo routine
observations and investigations and discuss treatment and aftercare. You can also
discuss your individual needs related to your Parkinson’s at this time. If the hospital
does not have a pre-assessment clinic then your individual needs should be discussed
as part of the hospital’s admissions procedure.
Who can I talk to about my needs during my stay?
Each patient admitted to hospital has a named nurse who has responsibility for that
person’s care. It can be helpful to discuss your individual needs with this named nurse
on admission. You should make sure you tell them about your routine and any special
needs so these can be included in your ‘care plan’, such as help with communication or
mobility.
There is a form at the end of this document that you can use to write down your
medication and individual needs. It is unlikely that this nurse will be with you throughout
your hospital stay, so ask to speak to their deputy as well to ensure that they too are
aware of your needs.
Should I take information about me and my condition with me?
Yes, take all relevant information about your condition and current medication with you
whenever you go to hospital, either as an inpatient or as an outpatient. Include any personal
information that you feel is important.
Your named nurse may be able to arrange for information about Parkinson’s and your
drugs to be included on the chart at the end of your bed so that night nurses and other
ward staff are aware of your needs when the named nurse is not on duty.
You should also ask your friends and family to inform your Parkinson’s nurse (if you
have one) that you have gone into hospital. Your nurse will then contact the hospital to
ensure they have all the information they need about your treatment.
Can I take my own medications into hospital?
Some hospitals allow patients to bring in their own medication when they are admitted –
if you have time, contact the hospital to find out.
If they will allow you to do this you should arrange to take your usual medications with
you and take them at your normal times, if possible. Your Parkinson’s nurse may be
able to help you arrange this.
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Make sure your hospital medical team is aware you are self-medicating and work with
them to avoid over-medicating. This could damage your health and cause you to stay in
hospital longer.
When you are settled in hospital, ask to see a Parkinson’s nurse (if there is one) or the
hospital pharmacist to discuss your medication. The pharmacist will need to make sure
your medication is in stock, or order more if needed.
If the hospital doesn’t allow you to take your own medication in, make sure that the
hospital staff know about all the medication you take, including any trial drugs,
unlicensed medication and complementary therapies. Tell them about everything you
take, not just the drugs you take for your Parkinson’s, adding whether you need to take
your drugs before or after food or with water. You may find the ‘Going into hospital’ from
at the end of this document helpful for keeping a record.
You need to stress to the hospital staff that the timing of your medication is very
important in order for the drugs to remain effective in controlling your Parkinson’s
symptoms. These timings may differ from usual ward drug rounds. One solution might
be for the nurse to have a pill timer in their pocket that rings when it is time for your
tablets.
Do I need to tell staff about the side effects of my medication?
Yes, If you experience side effects from medication, it’s important to tell hospital staff about
them.
One side effect that can cause a lot of confusion and misunderstanding in hospital is the
‘on/off’. This usually happens to people who have had Parkinson’s for several years.
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 return and are at their
most debilitating. If you have ‘on/offs’, make sure the staff understand that your ability to
do things may vary throughout the day and that you may need help when your
medication wears off.
Some people also experience involuntary movements (dyskinesia) of the arms, legs,
hands or body as a side effect of the drugs. If you do, discuss this with the hospital staff.
Dyskinesia may affect procedures such as X-rays, scans or radiotherapy, where 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 discuss it in advance.
If you are having a dental operation, the British Society for Disability and Oral Health, an
organisation of dentists who have a special interest in treating people with disabilities,
may be able to advise the dentist on ways to overcome this problem.
What if the staff don’t listen to me?
If you feel that you’re not being listened to, speak to a more senior member of staff – for
example the nurse in charge of the ward. You could also ask to speak to a
Parkinson’s nurse.
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In England, you could also raise this with the Patient Advice and Liaison Service (PALS)
in your hospital. Ask a member of the ward staff for details of how to contact your local
PALS.
In Scotland you can contact the Patient Advice and Support scheme (PASS) run by the
Citizens Advice Bureau. They are not based in hospitals, but you can find out more by
visiting www.cas.org.uk/patientadvice
In Wales you can contact the Community Health Council for the Local Health Board
where you are being treated. You can find out which Community Health Council to
contact by looking at the Board of Community Health Councils website
www.wales.nhs.uk/sitesplus/899/home. Alternatively you can find a list on this NHS
website: www.wales.nhs.uk/ourservices/directory/CommunityHealthCouncils
The equivalent body in Northern Ireland is the Patient and Client Council. See
www.patientclientcouncil.hscni.net for more information.
What if I miss a dose of medication during my stay in hospital?
If you miss a dose of medication during your stay, speak to the person in charge
(usually the senior nurse on duty) and let them know your concerns. You should ask
them what they plan to do about the situation and follow-up with them. If you don’t feel
comfortable doing this, you could ask a family member or friend to do it for you, or ask
to speak to your Parkinson’s nurse, who may be able to help you.
If you are unhappy with the outcome then you can complain about your treatment. If you
live in England contact PALS and in Scotland PASS. In Wales contact the Community
Health Council for your area and in Northern Ireland contact the Patient and Client
Council. For more details and for how to contact these organsiations, see the ‘What if
the staff don’t listen to me?’ section above.
We’d also encourage you to tell the Medicines and Healthcare products Regulatory
Agency (MHRA), using their Yellow Card Scheme. The Yellow Card Scheme is vital in
helping the MHRA monitor how safely medicines are being used. You can also send a
Yellow Card report to tell the MHRA about suspected safety issues or side effects of
medication. See www.yellowcard.mhra.gov.uk for more information.
It’s really useful to keep notes on who you spoke to, when you spoke to them, what you
said and what was agreed. If you’re unable to do this then ask a member of your family
or a friend to help you.
You could also contact the regional or country manager/director for Parkinson’s UK in
your area to discuss your complaint. Regional teams work with local hospitals to
improve care for people with Parkinson’s, and the country teams undertake similar work
in Scotland, Wales and Northern Ireland. Any examples of missed medication or delays
would help us to improve services. You can find out who the regional or country
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manager for your area is by visiting parkinsons.org.uk/content/our-regional-andcountry-teams
How do I complain about the way I’m being treated?
If you are in England speak to PALS and in Scotland contact PASS. In Wales contact
the Community Health Council for your area and in Northern Ireland the Patient and
Client Council. For more details and for how to contact these organsiations, see the
‘What if the staff don’t listen to me?’ section above.
You could also log your comments on the Patient Opinion website
www.patientopinion.org.uk. They will ensure your comments are passed onto the
right people.
You could share your story with us to enable us to illustrate the real life situations
people with Parkinson’s find themselves in every day. We could use your story in our
media and campaigning materials to help us improve services and raise awareness of
the condition.
If you live in England and want to share your story, please contact Amy Dilley on 020
7932 1362 or adilley@parkinsons.org.uk. In Scotland contact Tanith Muller on 0844
2253726 or tmuller@parkinsons.org.uk. In Wales contact Rachel Williams on 0844
2253784 or rwilliams@parkinsons.org.uk. In Northern Ireland contact Nicola Moore
on 0844 225 3680 or nmoore@parkinsons.org.uk.
What is Parkinson’s UK doing to ensure people with Parkinson’s get their
medication on time?
Parkinson’s UK offers training to health and social care professionals about how
tomanage the condition effectively through our UK-wide team of education and training
officers. This includes the importance of administering medicines on time.
We have a short 12-minute film that explains the importance of medicines management
in Parkinson’s, which you can see at parkinsons.org.uk/hospitaldvd and may wish to
make ward staff aware of.
I’m worried about having an accident when I’m on my own, which will mean I have
to go into hospital. Is there anything I can put in place to put my mind at rest?
Some people also find that wearing a Medic Alert bracelet or pendant can be useful.
This is an item of jewellery that provide contact details and medical information if
someone is involved in an accident. These will alert people to your particular health
issues if you are unable to communicate for any reason.
More information on these is available from:
Medic Alert Foundation
MedicAlert House
5
327-329 Witan Court
Upper Fourth Street
Milton Keynes
MK9 1EH
0800 581420
info@medicalert.org.uk
www.medicalert.org.uk
Some people also use community alarm systems. These may be worth considering if
you are concerned about how you would cope with a fall or anything else that might
require emergency assistance.
Community alarm systems allow you to call for help in an emergency, either by hitting a
special button on your phone or pressing the alarm on a device worn around your neck
or wrist. When the alarm is activated, it alerts people at a 24-hour response centre who
then get the appropriate help. Centre staff can also help with non-emergency advice.
Many local authorities or agencies run community alarm schemes, as do organisations
such as Age (for more information call 0800 169 6565 or go to www.ageuk.org.uk)
I care for someone with Parkinson’s. What happens if I have an accident?
If you are a carer, Carers UK produce a Carers Emergency card allowing carers to put
details of the person they are caring for and who to contact if they (the carer) have an
accident. For further details, contact:
Carers UK
20 Great Dover Street
London SE1 4LX
0808 808 7777
info@carersuk.org
www.carersuk.org
Some social service departments and local councils also have carers’ emergency
schemes, so it is worth checking what is available in your area. Your local social
services number should be in the phone directory or your GP surgery should be able to
provide details.
Can I take equipment I use to help with daily life with me into hospital?
You will need to check what the hospital policy is. If you can, make sure any equipment you
take is clearly labelled. You may want to add valuable pieces of equipment to your
household insurance. Discuss the equipment you use at the pre-assessment clinic or with
your named nurse on admission. If you cannot take your own equipment, check that suitable
substitutes will be available during your stay.
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You may also find that using new pieces of equipment to help you while in hospital may
make your stay easier, even if you don’t use them at home. These should only be used
under the guidance of the relevant therapy adviser, such as an occupational therapist.
I sometimes have difficulty communicating. What should I do?
If Parkinson’s affects your ability to communicate, make sure that the hospital staff know. A
soft quiet voice may be difficult to hear in a noisy place like a ward. You may have to talk
more than usual, which may tire your voice.
Some people may take a while to get used to your speech patterns. Lack of facial
expression may make staff think that you are not responding when they ask you something.
To get the attention of staff, make sure you know how to operate the nurse-call buzzer and
that it is near enough for you to operate even if you are ‘off’. Tell the staff you need time to
speak and answer their questions.
If you use a communication aid, make sure that you bring it with you. If there are times of the
day that are particularly good or bad for you, indicate this on the form or discuss this with
your named nurse. If you are having particular problems with communication in hospital, ask
if you can get some advice from a hospital speech and language therapist.
Will going to hospital affect my sleep pattern?
Wards can be busy places, even at night. You may find your usual sleep routine difficult to
keep to. The ward staff need to know your usual sleep routine so they can accommodate it
as much as possible.
Try to stick to your normal pattern – even if this means not getting up early in the
morning if you need time for your drugs to start working first. Is there anything that helps
you sleep, such as having your head up, a backrest or plenty of pillows? Do you need
help turning over in bed? Do you need to get up several times to go to the toilet? Do you
need help to do this? Let the staff know about your needs.
I’m worried about moving around when I’m in hospital. What can I do?
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 negotiate. All these can
make it difficult to maintain your independence when moving around the ward. If
possible, moving your bed closer to the bathroom, using equipment or getting
assistance from the staff will help you to keep mobile.
If you experience ‘on/offs’, let the staff know that you may need more help when you are
‘off’. If you are having particular problems with mobility, ask if you can get advice from a
hospital physiotherapist. An occupational therapist may also be able to advise on
dressing, washing and equipment that might help such as a stool to sit on in the
bathroom if this would help.
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Will I be able to eat properly?
The type of food available in hospital may differ from what you usually eat, so you may find it
helpful to order small meals from the ward menu and have your family and visitors bring in
extra snacks.
If you usually have a special diet (for example thickened fluids, puréed meals, PEG
feed), this will need to be ordered through the hospital dietitian. You will need to discuss
your needs in advance at the pre-assessment clinic.
If you use equipment to help you with eating and drinking or need help at meal times,
make sure you let the staff know. If you experience ‘on/offs’ and may need help at
mealtimes, make sure they know that this may happen so they don’t just assume that
you aren’t hungry. Eating well is important while in hospital to fight off infection and
maintain regular bowel and bladder function.
I’m worried about getting to and using the bathroom when I’m in hospital. What
should I do?
It’s important to discuss any concerns you have about getting to and using the bathroom at
the pre-assessment clinic. These may include whether you use a handrail or a raised toilet
and whether you can get to the toilet unaided. If you experience constipation, which is a
common symptoms of Parkinson’s, tell the hospital staff.
What arrangements should I make at home before going into hospital?
This depends on your situation, however you do need to think about any arrangements that
you need to make regarding your daily life while you are in hospital. For instance, do you
need to stop the milk or papers? Do you have an animal that needs looking after while you
are away? Your local vet may know of pet sitters, catteries and kennels, or there are
organisations that can help. Have you let your friends and neighbours know where you will
be? These are important considerations, especially if you live by yourself.
If you are being admitted to hospital for a non-Parkinson’s related treatment or
procedure, it is important to find out as much as you can beforehand about what will
happen. You may wish to know what preparation is needed, how long the procedure will
be, and what the planned after-care will be. You could also find out how your procedure
or treatment may affect your Parkinson’s. Your GP, hospital doctor (if available) or a
Parkinson’s nurse will be able to help you with this and liaise with the medical staff over
your care.
Does my Parkinson’s affect my ability to recover?
Being in hospital can be very stressful and having Parkinson’s may mean you need a longer
time to recover than someone who doesn’t have the condition. If you have any concerns
about this, seek advice from the healthcare professionals in charge of your treatment or your
specialist or Parkinson’s nurse.
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Can my Parkinson’s medication affect any preparation needed for a hospital stay?
Some operations require a nil by mouth regimen. If this is the case it is very important to
ensure that drug regimen is stable before, during and after the surgery.
If you are unable to take tablets by mouth, it may be possible to use apomorphine (a
dopamine agonist drug that is administered by injection), but this needs to be discussed
before you go into hospital for the operation – it may take some time to organise and it
may not suit you. Domperidone (an anti-sickness drug) is often used with apomorphine
and is available in suppository and liquid formulations.
With all operations, your anesthetist must know what Parkinson’s drugs are being taken,
as special precautions may be necessary. For instance, there is some suggestion that
there may be interactions between selegiline and pethidine (an anaesthetic used to help
alleviate pain during operations).
Some people with Parkinson’s can experience postural hypotension (a fall in blood
pressure when sitting or standing). If so, they often have higher blood pressure
recordings when lying flat. Your anaesthetist needs to be aware of this. The usual
advice of raising the head of the bed may not be possible for some procedures or
surgery if you have postural hypotension.
What happens when I’m discharged from hospital?
Making preparations for going home (discharge planning) often starts at admission. To
ensure that everything is in place to get home safely, you will be asked for information such
as phone numbers of people who will help you at home will be needed. If you rely on home
care services, avoid discharge over a weekend, if you can.
Make sure that you have enough medication for when you get home. Follow-up care
may include visits from community nurses and therapists, as well as hospital outpatient
visits. If you are concerned about arrangements for going home after a hospital stay,
ask if you can get advice from a hospital social worker. If you have been in hospital for a
long time or if your mobility has changed, it may also be possible for an occupational
therapist to arrange a home visit with you prior to discharge.
This will identify any activities you may find difficult when you return home and enable
special aids, equipment or other strategies to be put into place to help with these
What happens after my stay?
Aftercare is very important and any complicating factors that might be caused by
Parkinson’s should be taken into account. For example if you are having a hip operation,
physiotherapy will be an important part of the aftercare plan. Your lack of mobility due to
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Parkinson’s may mean that normal physiotherapy procedures may need to be adapted. You
should talk to the senior physiotherapists about your treatment following surgery.
Going into hospital form
Information for use on admission to hospital or respite care
If you have Parkinson’s and are to be admitted to hospital or respite care, you may find
it helpful to complete this form, giving details of your drug regimen and other relevant
information that you consider would be helpful to the nursing staff responsible for your
care.
Name: _______________________________ Date:________________________
The following drug(s) have been prescribed:
NB: It is important that they are taken at the times indicated.
Drug name
Activity
Speech
Dose
Time
Assistance required/aids used
Comprehension
Eating/drinking
Walking
Washing/bathing
Dressing
Turning over in bed
10
Bowels/bladder
Other information
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