Laura Cockram

Not enough people understand what it’s like to live with Parkinson’s. They don’t know it’s a serious condition. They don’t realise that treatments are limited and that there is no cure. That’s why on World Parkinson's Day (Monday 11 April 2022) we want to get the world talking about Parkinson’s. Key facts about Parkinson’s you might not know Parkinson's is the fastest growing neurological condition in the world. There are over 40 symptoms. From pain and stiffness, to problems with sleep and mental health. Everyone’s experience is different. Around 145,000 people in the UK are currently diagnosed with Parkinson's. 1 in 37 people today in the UK will be diagnosed with Parkinson's in their lifetime. Every hour, 2 more people are diagnosed. That's around 18,000 people every year. Up to 40% of people with Parkinson’s experience depression and up to 31% experience anxiety at any one time. At any time, around 3 in 10 people with Parkinson's experience dementia. This year, Parkinson’s UK is supporting two activities – Poems for Parkinson’s and Light Up Blue for Parkinson’s – chosen and led by a group of our dedicated and passionate volunteers: Poems for Parkinson’s Everyone with Parkinson’s, their carers and family has a story to tell about the condition. We are encouraging our community to write a limerick or five-line poem to share what it’s like to live with Parkinson’s. We want to tap into the creativity of the Parkinson’s community and share how the condition affects them, to improve awareness. Here are some examples from our Cherry Hill Parkinson's cafe on Teesside. Parkinson's nights have hours to kill Did I forget to take a pill? Stand sit, Stand and sit, Twirl around a little bit FOR GOODNESS SAKE, KEEP STILL! JUST CHILL! Saturday night and Strictly’s on telly If I could dance I’d give it some welly But my Parkinson’s shuffle Has got me in a kerfuffle And I’d end up like wobbly jelly Light Up Blue for Parkinson’s Iconic landmarks across the country have been lighting up blue to mark World Parkinson’s Day for several years. Our volunteers are asking more iconic public buildings to light up, but also some of our community are also lighting up their own homes blue to mark the day. They’ll then share this on social media and tell their local press, to spread awareness of Parkinson’s. How you can show your support for World Parkinson’s Day Light up blue at home or at work. Use this guide to find out more. Follow @ParkinsonsUK on Twitter and retweet any content we share on World Parkinson’s Day. Sign up to the Excellence Network newsletter for health and care professionals who want to work together to improve care for people living with Parkinson’s Further blogs in the Parkinson's series Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff Preparing to go into hospital – tips for people with Parkinson's and their carers Medication delays: A huge risk for inpatients with Parkinson’s

Emergency admissions 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 resources@parkinsons.org.uk. 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 content@pslhub.org

The impact of delayed medication “ I had to go into hospital after my knee gave way and I fell at home. Often you go into hospital with something unrelated to your Parkinson’s but then your Parkinson’s gets worse due to it not being managed properly. “While in the hospital I missed repeated doses of my medication due to a lack of knowledge and understanding of my condition-specific needs. This threw me out of sync completely – it brought on more severe depression, unsteadiness on my feet, more severe tremors. It affected me in so many ways. It’s impossible for me to control these symptoms, particularly my tremor, without my medication.” Carole (person living with Parkinson’s) The three main symptoms of Parkinson's are tremor, stiffness and slowness of movement but there are many more, including problems with sleep and memory and mental health issues. Each person can experience them differently. If people with Parkinson’s don’t get their medication on time it can seriously impact their health. They may not be able to move, get out of bed, swallow, walk or talk. Some people may never recover and may permanently lose their ability to walk, talk or worse. Even a delay in taking medication of 30 minutes can lead to serious health implications for someone living with Parkinson’s. Not only does this have hugely adverse effects on people’s health – keeping them in hospital longer – it also costs the NHS extra money. This is because a person who could already have been discharged needs to be looked after longer. 2019 NHS data showed that people with Parkinson’s face 28,860 excess bed days in hospital every year in England alone – this costs the NHS £10m a year. While not all of these excess bed days are from poor medication management, we know missed medication makes a large contribution to staying in hospital longer. Evidence of a widespread safety issue In 2019 we gathered evidence from across the UK around medication management for Parkinson’s in in-patient settings using a freedom of information request. It was sent to all hospital trusts in England, health boards in Wales and Scotland, and health and social care trusts across Northern Ireland. We also surveyed over 700 people affected by Parkinson’s to hear their views and experiences, we also used data from a survey we conducted on access to health and care services. Our findings confirmed that too many people with Parkinson’s were not receiving their medication on time, every time: 63% of people living with Parkinson’s did not always receive their medication on time when staying in hospital. 657 patient safety incidents relating to missed Parkinson’s medication were reported from just 47 hospitals in the financial year 2018/19. One hospital reported 97 patient safety incidents relating to Parkinson’s medication within this timeframe. 58% of hospitals do not record patient safety incidents for people with Parkinson’s and therefore have no insight into the severity of issues within the trust or health board. Only 44% of trusts and health boards offer ward staff mandatory training on Parkinson’s. 57% of trusts and health boards do not have a system that alerts Parkinson’s or movement disorder specialist professionals when a person with Parkinson’s is admitted to one of their wards. Many trusts and health boards have out-of-date self-administration policies that mean people with Parkinson’s able to take their own medication are unable to do so, with a further 26% of trusts having no policy at all. 31% of trusts and health boards are either unaware of – or not using – Parkinson’s UK learning and ward resources to support successful medication management. Understanding the challenges and barriers to safer care The average person living with Parkinson’s may find themselves on multiple doses of medication a day to manage their symptoms. The prescribed timing of these medications changes from person to person and often doesn’t correspond with typical medication rounds on hospital wards. This is because everyone’s Parkinson’s symptoms are different and therefore need different medication management regimes. When people are admitted to hospital for ill-health unrelated to their Parkinson’s, they are likely to be treated on a general medical ward rather than a specialist neurological ward. The risk of missing vital medication increases in these circumstances, as staff on these wards do not have an in-depth knowledge of Parkinson’s and related medication issues, including but not limited to, timely delivery of medication. Finding solutions to reduce harm Using digital tools Electronic Prescribing and Medicines Administration (EPMA) has huge potential to reduce medication errors in hospitals. The NHS goal of going paperless by 2024 means that every NHS trust could soon have the software needed to help tackle this problem. In a prizewinning project, NHS Ayrshire and Arran Parkinson’s nurses worked with the epharmacy team to link individual’s prescribing data to a ward’s electronic whiteboard, placed in the nurses’ station. This showed a symbol that turned green to indicate when Parkinson’s medication was due, and red when it became late. This visual prompt significantly improved medication administration times. Before the intervention, only 10% - 41% of Parkinson’s medications were delivered on time on the ward. This rose to 65% - 83% in the six weeks following the intervention. The project potentially has applicability to a range of other conditions with time sensitive medication, including diabetes. The opportunity to build the needs of people with Parkinson’s in hospital into the rollout of EPMA could be transformational. Identifying patients with Parkinson’s on admission An alert system that flags when a person with Parkinson’s is admitted to their specialist team would help to ensure that the individual gets the right medication and support and that ward staff fully understand how to care for their patient. Identifying trusts that need support We also believe that every hospital trust and health board must record patient safety incidents by condition to improve reporting on missed medication for people with Parkinson’s. This will provide data for trusts and health boards that need the most support to improve. Recording missed doses as Never Events We believe that the Care Quality Commission in England should make a missed dose of Parkinson’s medication a Never Event. A Never Event is an incident with the potential to cause serious harm to a patient but which is wholly preventable. Making a missed Parkinson’s dose a Never Event would boost awareness and reporting. Parkinson’s UK: Get It On Time Campaign We launched our refocused Get It On Time campaign in October 2019 and had great support from a handful of hospitals across the country who our supporters got in touch with. They agreed to implement the mandatory staff training and self-administration of medication policies. When the pandemic hit we scaled back our campaigning so the NHS could focus on COVID-19. We are currently preparing our supporters to get back out to trusts and health boards to urge them to implement our campaign asks. In 2021 we’ll be gathering evidence on how medication is managed for people with Parkinson’s who live in care homes and then launching campaigning activities to improve the situation in these settings. If you’d like to support Parkinson’s UK campaigns you can sign up to receive regular updates and take action by joining our Campaigns Network or if you have a few spare hours a month you could even become a campaign volunteer. Working together we can make things better for people affected by Parkinson's. Laura Cockram Further blogs in the Parkinson's series Keeping patients with Parkinson’s safe in hospital: 4 key actions for staff - a blog by Dr Rowan Wathes, Associate Director of the UK Parkinson's Excellence Network at Parkinson's UK Preparing to go into hospital – tips for people with Parkinson's and their carers - a blog from Laura Cockram, Head of Policy and Campaigning 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 content@pslhub.org