Parkinson’s is the fastest growing neurological condition in the world. It affects young or old, and in the UK around 145,000 people are living with the condition. With population growth and ageing, this figure is estimated to increase by 20%, within the next ten years.
Currently there is no cure for Parkinson’s, but medication plays a vital role in managing symptoms and preventing deterioration.
In this blog, Laura Cockram, Head of Policy and Campaigning at Parkinson's UK, talks about:
- How people with Parkinson’s can prepare their medication to go into hospital.
- Resources that can support you.
Going into hospital as an emergency admission can be an anxious time for many people and we know that you may be worried about what to tell staff if you're admitted to hospital in an emergency. You should:
- Tell staff you have Parkinson's and how important it is to get your medication on time.
- Explain to staff what medication you take. Show them your medication record and ask them to keep a copy of it in your notes. Check they have recorded this accurately.
- Ask a member of staff to let your GP, specialist or Parkinson’s nurse know you are in hospital.
- Tell staff if you have had deep brain stimulation and show them your patient ID card.
Preparing for a planned hospital admission
We know that people with Parkinson’s may also need to go into hospital for other reasons other than their Parkinson’s. These hospital admissions are usually planned, so when talking to staff who are planning your admission we suggest you:
- Keep an up-to-date medication record, which includes all the medication you are currently taking (not just for Parkinson’s) and what time you take each dose.
- Tell your GP, specialist or Parkinson’s nurse that you're going into hospital. They can provide details of your medication regime to the healthcare team who will be looking after you. Your Parkinson’s nurse can also talk to the ward staff about the importance of getting your medication on time. Your partner or carer could also inform them if you don’t have time.
- Make sure people know you have Parkinson’s. You can do this at a pre-admission assessment, or when you are admitted.
- Prepare extra supplies of your medication, which should be kept in its original packaging.
- Find out whether your hospital has a self-administration policy for medication on your ward.
- Tell staff if you have had deep brain stimulation (DBS) and show them your patient ID card.
During your stay in hospital
If you have Parkinson's, it's important that you feel comfortable during your hospital stay and have everything you need to be able to manage your symptoms. Here are some tips to make it more comfortable:
- A named nurse who will be responsible for your care – they may also be known as your key or primary nurse. Tell them about your condition, your needs and your medication regime and they can help to ensure this is on your notes, so other staff are aware of your needs, when your named nurse is not on duty.
- If you need equipment to help with daily tasks, ask the hospital if you can bring these in before you’re admitted. Using this equipment could help you to stay mobile.
- Hospital wards can be busy, even at night. Try to stick to your usual routine and let your named nurse know about your usual routine – i.e. if you need to be turned during the night or need to get up several times to go to the toilet.
- If you have any dietary needs linked to your medication you should talk to a hospital dietitian so that you can plan ahead. This will help you continue with your medication regime. You can also discuss anything specific at your pre-admission assessment. You should also let ward staff know if you use any special equipment to eat and drink with or if you experience ‘on/off’ periods or need help at meal times. It’s important to eat well while in hospital because this will help to fight off infection and maintain regular bowel and bladder function.
Preparing for surgery
If you are having surgery for something not connected to your Parkinson’s, make sure the healthcare professionals involved know about your condition. This will mean that anything about your Parkinson’s that could create problems, such as dystonia or a tremor, can be taken into account so you can still be treated properly.
If you need to have an emergency operation, it is important that the healthcare team looking after you know you have Parkinson’s as soon as possible.
Here’s what you can expect:
- You will usually meet your anaesthetist on the ward before your surgery. It is very important they know you have Parkinson’s and what medication you take for the condition. The anaesthetist will also discuss your Parkinson’s symptoms and how they may affect you during surgery, as well as explaining any risks or side effects of the drugs you might have.
- It’s important that you can keep taking your Parkinson’s medication as close to 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.
- Medication may be given during surgery if your operation is taking longer than planned and there is a risk of missing a dose.
- If you are worried about your Parkinson’s symptoms or medications ahead of any surgery please speak to your Parkinson’s consultant and ask for any advice to be shared with the healthcare team conducting the surgery.
Managing your medication in hospital
It is important you are able to take your medication on time during a hospital stay, this will help you manage your Parkinson’s symptoms. Here are some tips on how you can help manage your medication in hospital:
- Ask if you’re able to administer your own medication. If so you’ll need to bring your medication in its original packaging. Ask to see their self-administration of medication policy and find out where your medication will be stored on the ward and who will have the key if it needs to be locked away, whether you can keep it with you and who will update the drugs chart when you take your medication. It’s crucial your healthcare team is aware you are self-administering your own medication.
- If you can’t bring your own medication into the hospital and take it yourself, you need to make sure you still get 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.
- If you miss a dose of your medication, 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 can, keep a note of who you spoke to and what was agreed, so you or a carer can follow this up. Never feel you are being difficult. Remember, failing to give you your drugs on time makes extra work for the ward staff.
Resources to help you manage your Parkinson’s medication in hospital
You can find all of this information and more, in this handy booklet about going into hospital when you have Parkinson’s.
Parkinson’s UK also produces a magazine where people living with the condition, carers and health professionals share their tips and experiences, including going into hospital.
The Get It On Time washbag helps people with Parkinson's to store their medication and inform hospital staff that they need to take it on time. It includes tips on preparing for a hospital stay and a card to record your medication doses.
If you’d like to order a copy of this booklet or the washbag you can order them online by:
- Visiting the Parkinson's UK shop
- Calling 0330 124 3250 or
- Emailing email@example.com. If you're emailing us, please remember to include your delivery address and the name and code of the item.
Further blogs in the Parkinson's series
- Medication delays: A huge risk for inpatients with Parkinson’s - a blog from Laura Cockram, Head of Policy and Campaigning at Parkinson's UK
- Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff - Dr Rowan Wathes, Associate Director of the UK Parkinson's Excellence Network at Parkinson's UK
Share your insights with Patient Safety Learning
Have you experienced medication delays or unsafe care while you were a patient in hospital? How did it affect you and your health?
Perhaps you are a healthcare worker who has insight to share? What are the challenges staff face in delivering medication on time? What do you feel are the biggest barriers to providing consistently safe care? Have you implemented changes that have improved outcomes?
You can share your insights in the comments below, or email us at firstname.lastname@example.org
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