Caring for someone who's in hospital

Caring for someone who's in hospital

If you look after someone your role as a carer continues even if the person you care for needs to stay in hospital. However, things will probably be quite different and you may be faced with new, unfamiliar challenges.  You'll probably feel that your biggest task is to make sure the person you look after is getting the care they need while they're in hospital. 

Working together with hospital staff

If the person you care for is unable to (or struggles to) communicate for themselves, make sure you tell the nurses and health care assistants about their preferences. This could be simple things such as what time they usually sleep, whether they prefer TV or radio, or it could be more important information such as religious beliefs or whether the person has an advanced decision in place about future medical treatment. This information will help the doctors and nurses provide better, more personalised care. 

It may feel strange handing the tasks you normally do, such as helping the person eat or wash, over to nurses and health care assistants. 

Every hospital has different ways of working. Some will be happy for you to stay on the ward and help provide care to the person throughout the day. Others will prefer you to leave all caring tasks to hospital staff and will have strict visiting times. If you aren’t comfortable with how much input the hospital are allowing you to have, then make sure you tell the staff how you feel and work with them to find a solution.

John's Campaign

Both acute hospitals in Derbyshire (Chesterfield and Derby) have signed up to John’s Campaign, as have Derbyshire Health Community Health Services who run some of the community hospitals in Derbyshire. The campaign works with hospitals to make it possible for people with dementia to have their carer stay with them on the ward. Having their usual carer, often a close family member, who they are familiar with often helps to limit the amount of stress and disorientation the person might feel through being in an unfamiliar setting such as a hospital. 

The John’s Campaign website has a list of organisations and hospitals that have pledged to support it.  

Chesterfield Royal Hospital

Chesterfield Royal Hospital is working in collaboration with Derbyshire Carers to implement the principles of John’s Campaign. The hospital has recognised how important carers are to the welfare of patients both in and out of hospital. They have implemented a carer forum to look at issues around hospital stays and carers including finding out what carers feel is most important while the person they care for is in hospital.

This will include a carers charter of how hospital staff will work with carers as partners in the care of their loved one and also how staff will support carers' needs. Carers and staff will be able to use a 'carers passport' to make it clear which tasks carers want to carry out while their loved on is in hospital. The passport is used to make a simple written plan about how the carer and hospital staff will work together.

 The hospital's Senior Matron, Glyn Wildman has signed up as an ambassador for John's Campaign to help make sure all staff at the hospital work to support carers. For further information please contact Rebecca Cowley by email: rebecca.cowley@nhs.net

Royal Derby Hospital

Royal Derby Hospital is now allowing open visiting for two main carers for every patient who needs that provision. For carers, that means they can stay with their friend or loved one for as long as they need and want to, either by the bedside or in the carer’s room, known as John’s Room. Nursing staff will ask how the carer(s) would like to care for their loved one, creating a shared care agreement which details the role each person will play. A leaflet called ‘John’s Campaign and open visiting - a guide for carers’ has been created which contains all the information required by carers. This leaflet should be shared with all care coordinators in practices and anyone else who may have links with signposting resources for carers available through Royal Derby Hospital. 

For further information please contact Derbyshire Carers head office on tel: 01773 833833

Even if the hospital your loved one is staying in is not officially signed up to John’s Campaign, the staff may still let you help provide care. John’s campaign is aimed at people with dementia and their carers but the same principles could be applied to anyone who has a regular carer and would find a stay in hospital disorientating or stressful. Speak to the staff to see what their policy is.

All hospitals have Patient Advice and Liaison Services who you can speak to if you aren’t happy with how the person you cared for is being looked after. 

Don’t be afraid to ask

If you are confused or have queries about the medical care of your loved one do not be afraid to ask questions. Keep a running list of any questions you have so you are prepared for the next time you are able to see the person you care for’s doctor. If you don't understand what the doctor is saying, ask him or her to provide further explanation. It's okay to speak up.

Information sharing

In some cases hospital staff may be unable to tell you things about the person you care for – such as test results or the outcome of an assessment. This can often be an issue if the person you care for has mental health issues. As a carer you may find this very frustrating.

Hospital staff are bound by confidentiality laws and have to follow rules about what information they can share. However staff also know that involving carers plays a key part in providing more effective care and health services that are co-ordinated around the needs of the person. Sharing information can be complex in some cases. Speak to the ward staff and ask them to explain to you what the rules are. You can find out more about information sharing and setting up and agreement, You may also be interested in finding out about power of attorney and advance statements.   

Learning disabilities

Derbyshire Healthcare Foundation Trust have put together a list of specialist learning disability nurses who work in the lcoal acute hospitals. If the person you care for is in hospital, or is due to go into hospital, you can contact the nurses to discuss any worries. The nurses will help people with a learning disability prepare for a hospital admission and make sure they are prepared and know what is going to happen. They also give advice and information to carers, as well as helping to plan discharges.

Get a break

Although you may want to stay with the person you care for as much as possible while they’re in hospital, it could be a good opportunity for you to get a break from caring. If this is the case, don’t feel guilty about taking it. You need to look after yourself to stay healthy and well and getting a break is a big part of that. 

Get support

Sometimes talking to other people in a similar position to you can really help. The carers directory has details of carer support groups, social activities and organisations who can support you. You can also get support from other carers using online forums or there are some good telephone advice lines available for carers.

If you haven't already done so, think about having a carer assessment. You may also be entitled to a carer personal budget.

If the person you care for is getting to the stage where they are ready to be discharged, you may be interested in the 'caring for someone leaving hospital page'.  

Practical matters

Cost of visiting

Visiting someone in hospital can be very expensive, especially if you have to travel a long way to get there.

If you use public transport, see if there are any discount schemes you can take advantage of. If the person you care for is likely to be in hospital for a while, you will get a better deal on fares if you buy a ticket covering a number of days in advance, such as ‘Day Rover’ or ‘Wayfarer’ ticket. 

If you drive make sure you look for any discount parking offers. Again, it may be cheaper to buy a ticket that covers a certain amount of days in advance. Or could you park somewhere else and walk the last part of the journey?

If paying to visit your loved one in hospital is causing you financial hardship you may be able to apply to the Derbyshire Discretionary Fund for help with transport costs.  

Benefits

If the person you care for is over 18 and is in hospital for more than 28 days then some benefits such as Disability Living Allowance (DLA) , Personal Independence Payment (PIP) or Attendance Allowance will stop.

If the person you care for is under 18 then their DLA or PIP can continue to be paid for the whole time they are in hospital.

If the Disability Living Allowance, Personal Independence Payment or Attendance Allowance of the person you care for stops, your Carers Allowance will also stop.

If you need any advice about claiming benefits, contact the Welfare Rights Service on tel: 01629 531535, between 11am and 4.30pm, Monday to Friday or email: welfarebenefits@derbyshire.gov.uk.

Working and caring

If you are juggling working and caring it may be that having the person you care for in hospital adds additional pressure. You may struggle with finding the time to visit or maybe the hospital's visiting hours don't fit in with your working pattern. Check you are clear about your employment rights before asking for any time off work or for any adjustments to your working pattern. 

Having your say

To make sure health and social care services can improve in future, it is important you provide feedback and tell them what you thought.

If you are not happy with the service you or the person you care for used, don't be afraid to make a complaint. Complaints help services to improve by learning what they could do better. 

Other helpful websites

This information was last updated on 03/08/2017

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