Going into hospital with Parkinson’s
Going into hospital can be an anxious time and for people with Parkinson’s
it is important to be well prepared. Careful planning and making sure that the
hospital staff are aware of your needs can help enormously. The importance of
discussing how Parkinson’s affects you personally cannot be underestimated; it
is key to your safety and quality of life whilst in their care. If you meet
with a lack of understanding be patient in trying to explain as most will be
keen to help once they recognise your needs.
During your stay, if something is unclear to you about your care or surgery
always ask questions and make sure you understand any choices to be made. If
you feel that something is not being done as it should be, particularly if
medication is being missed or given at the wrong time, ask staff to check your
notes again and amend your care plan for other staff to see. Don’t feel a
nuisance – everyone, including doctors and nurses, need reminders sometimes.
And remember, showing respect for staff and thanking them when they get things
right can work wonders and make them far more willing to help.
Hospital routine can differ greatly from your daily life, and you may be
nursed by people who have no experience of caring for those with Parkinson’s.
This information is designed to help you and your carer to prepare for and
effectively manage your stay. Much of the information can also be applied to
going to a day hospital, or a care home.
Planned admission
In many cases hospital admission is planned and it is likely you will have
an appointment in advance during which your medical history will be discussed
and your in-hospital and post-hospital care explained. Take any important
information and details regarding your care to this meeting: contact details,
medication notes, dietary requirements, difficulties going to the toilet etc.,
and raise any concerns you have.
If a particular member of staff will be responsible for your care, request
that they be given a copy of the information you provide. It should be possible
for key points regarding your care to be included on your personal file by your
bed for all staff to see.
Should you undergo surgery ask for details of the procedure – what advance
preparation is required (for example, from what time should you not eat
beforehand), the duration of the operation, how long before you will be able to
get out of bed, what the anticipated recovery time is etc. By having this
information in advance you can discuss any concerns with your own doctor and
plan any necessary changes to your medication or routine. Your doctor can also
discuss any special needs with hospital staff to ensure that appropriate care
plans are in place for you.
If you do not have an appointment prior to admission then you should still
gather together important information regarding your particular needs and
ensure that they are discussed with hospital staff when you are admitted.
You should also speak with the healthcare
professionals who provide your routine day-to-day care – your doctor,
pharmacist and physiotherapist, for example – and let them know that you will
be going into hospital. Ask if they have any information, leaflets or other
literature that will be useful to pass to hospital staff.
Emergency admission
If you are admitted to hospital in an emergency it is important that staff
are made aware as quickly as possible of your needs in managing your
Parkinson’s. There are different emergency admission procedures for each
country but, if possible, ask for your own doctor to be contacted so that they
can quickly explain your needs to the hospital staff.
It is wise to prepare your carer or close family and explain what should
happen in the event of an emergency. Keep important information close to hand –
perhaps by the telephone, in your handbag or wallet or another obvious place –
including details such as the following:
- a list of medications and
dosage (and make sure that your carer or close family are aware that they
may have to be proactive in reminding staff about administering these on
time)
- carer and family contact
details
- a notice or letter
explaining if you have had deep brain stimulation and must not undergo
certain types of diathermy or MRI treatments
- contact details for your
own doctor or other members of your multidisciplinary team
- special dietary
requirements
- any allergies or
contraindications
- care of any pets if you
live alone.
If you live alone you may consider having an emergency alarm in your home or
on a device worn around the neck, which if pressed will notify someone at a 24
hour response centre that you need help. Availability and charges vary from
country to country – ask your doctor or local Parkinson’s association for more
information.
You may also want to wear an emergency bracelet or
necklace on which your contacts and important medical details are engraved.
Various companies provide such items – again ask your doctor or local
Parkinson’s association for more information.
