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Redefining the terms ‘visitor’ and ‘visiting’ When I used to see my husband, wherever he was, I KNEW that I was NOT a ‘visitor’ – as a ‘visitor’ I would have gone out of kindness, with a drink, or fruit or whatever, but I was his wife and partner and best friend, and the one who had been caring ABOUT him for the last 7 years, until we both simply buckled. I was there to observe, to pick up on issues, to ask about medication, to hold his hand, to do a crossword, to listen to music, to ensure he was hydrated, to point out food preferences, and also to ask the staff to familiarise themselves with his life story book – an action which would help them engage better with him, because they would have starting points for conversation. I was not a ‘visitor’. I was a partner in his care, and advocate for him. Two initiatives have seen the redefining of the term ‘visitor’. John’s campaign John’s campaign is for the right to stay with people with dementia, for the right of people with dementia to be supported by their family carers. “Families are never visitors to a person with dementia; they are an integral part of that person's life and identity and often their last, best means of connection with the world.” On the 5 January 2022, Liz Saville-Roberts stood up in Parliament during Prime Ministers Questions and asked Boris Johnson if he agreed that disabled, sick and elderly people's human rights are not fair-weather luxuries, and that everyone with dementia, wherever they live, has the right to family life. For me this offered such hope for families. Organisations have signed up to John's campaign and made their own settings welcoming to families at various times, and, importantly recognised that the carer is still a partner in care, and IS a part of the therapy, the healing, the treatment – whatever you want to call it. The essential caregiver Age UK states: “guidance outlines that each resident should be able to choose an ‘essential care giver’. This is someone who provides not only companionship but also additional care and support to the person in the care home. The essential care giver should be able to visit more often, including during periods when the resident has to isolate due to coronavirus or if there’s been an outbreak in the care home.” Another welcome improvement to the situation, and again an acknowledgement of the role and of the importance of this person to the person in hospital or care. BUT, do ‘essential caregivers’ know who they are? Know what it means? Have they been consulted? And are they able to carry out their role? We need to redefine or rename the role of the ‘visitor’, particularly to clinicians and others involved in care. This can only be done through communication and co-production with those very families. We must be vigilant and ask questions, and ask for clarification and challenge when necessary whenever new ‘visiting’ regimes are in place. Sadly, I can envisage a meeting of staff (with no patients or their families present) to discuss this and we just need one person in the room to say how much “easier” it has been with no visitors, and that view would easily gain traction. This worries me… and must not be allowed to happen.

When it comes to the discharging of a patient from hospital, it should be a time of relief – perhaps a long-term condition or illness is under control or an operation completed successfully. However for many thousands of carers this is not often the case. In more normal times, a period in hospital would have provided an opportunity for the close family friends and carers of a patient to become familiar with treatment plans, clinical staff and plans for discharge, as well as whatever rehabilitation and after care is needed. Being able to visit the patient in hospital would have also provided opportunities to alert clinical staff to changes in a patient which only a close family member or carer would recognise. Even if that’s as a result of a sneaky look at the patients notes at the end of the bed! Although not always perfect, the carer was able to be a partner in the triangle of care between patient, clinician and carer. In these times, and with the necessary Covid policies put in place, it has meant those relationships have not been developed; the ability to notice changes and ask and receive answers to questions has gone and even being able to make contact with the patient has been made more difficult. The person who knows the patient best has in many ways been cut out of the conversation. This is even more problematic if the main carer is not the next of kin and if consents and permissions are not agreed ahead of admission. This has then resulted in poor quality discharges from hospital, putting patients at risk and even more pressure on carers who then take the reins of providing physical and emotional care for the person they care for. The impact of this could be readmission, a worsening of the patient’s health and a negative impact on the health and wellbeing of the carer. Nobody knows a patient better than the person who is caring for them, who often has been their carer for many years but may have also known them well long before they became their carer. Carers are all different, of any age and many are in education or work as well as often having other responsibilities – children, parents, as well as their own health needs. Many are not financially well off and and continue to provide care themselves often for 24 hours a day. Carers need to be resilient and problem solvers but caring is tough and everyone involved in a hospital discharge needs to recognise the carer as an equal partner so that a discharge is positive and doesn’t result in further harm to the patient or the carer. In a recent Carers UK report on experiences of hospital discharges, only a third of respondents said they had been involved in the decisions about discharge and what care and treatment the person they care for needed. Only 21% agreed that they had been asked about either willingness or ability to care at discharge and only 20% were given enough information and advice to care safely and well.[1] Imagine how this would feel if it were you? We have heard first hand from carers about their experiences, the challenges they face and what support they need. An example is James’ story as a young carer. This highlights the challenges and frustrations experienced by James when it came to caring for his mother and reinforces the need for the main carer of an individual to be recognised as an equal partner in the discharge process regardless of whether they are the next of kin or not. If you are involved in hospital discharge this is how you can help the carer: Ensure that carers are involved in all discharge planning conversations because they know the person they care for best. As well as being considered an expert partner, the needs of carers themselves also need to be considered before a patient is discharged. Provide carer awareness training for all health professionals to help them better identify and know how to ensure carers they come into contact with are supported. Reference 1. Carers UK. Carers’ experiences of hospital discharge: Discharge to Assess model. 7 September 2021.

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

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