Carers' hospital discharge guide

Introduction

Taking care of someone who depends on you can be both fulfilling and difficult, especially during hospital visits.

When your loved one is in the hospital, you might worry about how to meet their needs once they are back home. Whether you've been caring for them for a long time or are just starting, it's crucial to know what support is available for you both during their hospital stay and after they return home.

This guide is here to help unpaid carers by offering essential information and practical advice from the moment of hospital admission to discharge. You might find some or all of this information useful. This information can be helpful at different times, like before going to the hospital, during an outpatient appointment and for both planned and unexpected hospital stays.

Who are carers?

A carer is anyone who provides unpaid help and support to a family member, partner, friend or neighbour with daily life.

Carers include adults, parents or children and young people. They might be adults looking after other adults, parent carers looking after children with a disability and young carers under 18 years old looking after an adult or sibling. Carers may provide emotional as well as physical support, including care for those with mental ill health concerns and addictions.

You can still be a carer even if the person you help gets other care services, lives in a care home, or lives far away from you. No one should assume you will start or continue caring for someone without discussing it with you first.

Telling people you are a carer

It's important to inform hospital staff as soon as possible that you are a carer.

This lets them give you the support and help you need. Ask them to note this on the medical record of the person you care for so they can consult you about decisions that affect you when that person is discharged. See involvement in decision-making and consent.

They can refer you to other support organisations through a carers' prescription. The carers' prescription offers various services, including:

• a carers' information pack
• Action for Carers – carers' support
• Crossroads Care Surrey
• moving and handling service
• young carers support
• a flu vaccination voucher

Carers can also register with their GP to get this help and more flexibility in booking doctor's appointments.

Carers' Hospital Passport

A carers' passport explains the support, services and benefits available when the person you care for is in the hospital. If you want to keep helping them while they're in the hospital, the passport helps you and the hospital agree on how much support you can give.

Speak to the nurse in charge of the ward about getting a Carers' Passport, or Action for Carers can request one on your behalf.

Sharing information about the person you care for

Sharing details about the person you care for helps healthcare professionals provide tailored care, especially if they can't easily share information about themselves.

The following information can help health care professionals know more about the person's wishes and preferences:

• This is me - Alzheimer's Society
• My care passport - for people with learning disability
• Jonh's campaign
• ReSPECT

You can also ask to speak with a nurse who specialises in learning disabilities, autism, dementia or the palliative care team if the focus is on making someone who is seriously ill more comfortable.

Involvement in decision making and consent

Hospitals can be busy and you might feel pressured to take the person you care for home quickly. However, your thoughts and concerns are important. They shouldn't be sent home unless the support that is needed is in place.

You can be involved in making decisions and arrangements for leaving hospital if the person you care for agrees. If they have given consent, the health and social care team should work with you and listen to your opinions and concerns, to make sure the right support is organised before the person you care for leaves hospital. Make a note of all key professionals involved in their care so you can keep communications open and effective.

If the person you care for does not give consent for you to be involved, you can still speak to the medical team to let them know what support you are willing and able to give.

If the person you care for lacks the mental capacity to give consent, you might have Lasting Power of Attorney (LPA) for them. This allows you to make certain decisions about their health and welfare if they're unable to. If there's no LPA in place, healthcare professionals must act in the person's best interests according to the law, but you can still participate in this decision-making process.

Getting help and advice

Action for Carers Surrey

Action for Carers Surrey is an independent charity who provide information, advice and support to carers. We jointly commission this service with Surrey Heartlands Health and Care Partnership.

They have Hospital Carer Support Advisors based in:

• East Surrey Hospital
• Epsom General Hospital
• Royal Surrey County Hospital
• St Peter's Hospital

They can support with:

• helping to bridge communication gaps between carers and hospital staff, including advocacy when appropriate
• advice and information
• signposting to other organisations
• understanding the hospital discharge process
• referring you to support in the community
• moving and handling service - provides training on safe moving techniques to prevent injuries and assesses the need for appropriate equipment
• accessing carer break grants

Speak to the nurse in charge to be referred to a Hospital Carer Support Advisor or you can contact Action for Carers.

Crossroads Care Surrey

Crossroads Care Surrey is a charity that helps people who care for others of all ages with various health conditions and disabilities. We jointly commission these services with Surrey Heartlands Health and Care Partnership.

Services include:

• short term wellbeing breaks for carers to take time off from their responsibilities
• the Surrey Carers' Card, which identifies someone as a carer, includes a personalised carers emergency plan and offers discounts
• 24-hour emergency support for up to 48 hours, ensuring the cared-for person receives assistance if the carer is unavailable
• special support for those caring for someone in the last year of their life

Contact Crossroads Care Surrey to find out more.

GP Carers' Break Payment

In Surrey, the GP Carer's Break scheme allows GPs to give carers a one-off payment of up to £300, based on a health assessment.

You can use this money for alternative care or for items and services that help you relax and improve your wellbeing. If your GP agrees, they will apply for the payment for you. The payment depends on availability, so check with your GP to see if they are part of the scheme. This payment is not related to hospital admission.

Long term breaks

If you need help on a longer-term basis, you will need a carer's needs assessment to find out what support will make your life easier and what you are eligible to get.

You can be referred for an assessment by:

• Crossroads Care Surrey
• Action for Carers
• your GP or other healthcare professionals

You can also refer yourself.

Carers' needs assessment

You are entitled to a carers' needs assessment by the social care team. Don't be put off by the word 'assessment' – it is not a test of your abilities as a carer.

A carer's' needs assessment is simply a chance for you to talk to the social care team about how taking care of someone affects you physically and emotionally. The purpose is to figure out what kind of support you might need because of your caring role. It helps the social care team to understand if you're able to keep caring and if you qualify for any extra help. During the carers' needs assessment, we'll work together to make a support plan tailored to your needs. This might include practical help or connecting you with local support groups.

To find out more see Assessing your needs as a carer.

Living with a long-term condition

Long-term health conditions come with various difficulties.

Besides managing the physical aspects, you might also require financial guidance, emotional support, or assistance with adjusting your lifestyle. There are numerous services and charities that offer both practical help and emotional support.

To find out more about the support that is available speak to your GP or see Long-term conditions.

Online support

As a carer you can access a wide range of resources online, including:

• health and wellbeing support
• technology to help with caring
• financial planning, including benefits and managing someone's affairs
• working and skills
• online community of fellow carers

See Looking after family or friends to find out more.

Connect to Support Surrey

Connect to Support Surrey is a trusted online directory providing information and services specifically to support you as a carer, including local support groups for carers.

See Connect to Support Surrey.

Space 2B You

Space 2B You is an online mental health service for families. We jointly fund this service with Surrey Heartlands Health and Care Partnership.

The service focuses on the whole family, to improve the carer's wellbeing and understanding of mental health and neurodevelopmental issues.

Carers can access this support even if the person they care for isn't using Space 2B You or other mental health services.

Support includes:

• group or 1-2-1 sessions to improve carers' wellbeing, knowledge and skills
• personalised support, including mental health education and skills training
• help for families to understand the impact of mental health conditions
• signposting carers to other services when needed

See Space 2B You.

Mobilise

Mobilise is a carer-led digital community providing a complementary layer of added support that can be accessed remotely via an online hub by anyone caring for a loved one in the county. You can download the app for free on Apple Store or get it on Google Play.

The digital support available includes:

• an online peer community of thousands of fellow carers - with the chance to share advice and experiences through a community forum and during regular events, such as the 'virtual cuppa'
• easy-to-use, self-service tools outlining the different forms of support which carers may be entitled to and guidance on how to navigate eligibility criteria and access various benefits, for example:
  • tailor-made support guides on everything from how to balance caring with full-time work, to managing personal health and wellbeing while looking after someone else
  • information on carers' rights and relevant social care law, in line with the latest government guidance

See Mobilise Surrey.

Support from the NHS

To find out more about support from NHS organisations, visit:

• Support for carers - Surrey Heartlands Health and Care Partnership
• Support for carers - Frimley Health and Care

Benefits advice

Carers may be eligible for certain benefits.

These include:

• Carers' Allowance
• Carers' Credit
• Universal Credit
• Pension Credit
• help with Council Tax
• Housing Benefit

Attendance Allowance is not for carers, but the person receiving care can use it to pay for replacement care if they want. It might also help carers qualify for benefits like Carers' Allowance and provide additional help with Council Tax for both the carer and the person receiving care.

It is important that you tell the Department for Work and Pensions (DWP) if you or the person you care for go into hospital, because some benefits will be paused after you have been in hospital for a certain amount of time. Once you leave the hospital, let them know so they can restart the payments.

Find your local Citizens Advice or speak to Action for Carers who can give you advice and help you access additional income because of your caring role.

See Surrey Welfare Rights for more information.

Equipment and technology

If you, or someone you look after, is struggling with everyday tasks, then simple equipment, new technology or small changes to your home can make the difference between living independently and needing someone to help you.
There is good information online on different options including:

• personal care alarms and GPS trackers
• technology-enabled care
• home equipment finder

Major adaptations

Adaptations can help people who are older or have a disability stay in their own homes safely and for longer. Major adaptations can include things like converting conventional bathrooms into wet rooms or installing a 'through the floor' lift.

See Major adaptations for a comprehensive, step-by-step guide to help you understand the process.

Carers' rights and self-advocacy

Knowing what your rights are as a carer is important, as it can help empower you to access services and have conversations that can help you in your caring role.

This can include accessing support, taking a break and balancing work with your caring responsibilities.

There are several important pieces of legislation it is helpful to understand as a carer. These include:

• Care Act 2014
• Children and Families Act 2015
• Health and Care Act 2022

Summary of carers' rights and the law

Carers have the following rights as defined by the law:

• you can choose whether or not to be a carer
• you can decide if you are willing and able to care
• coercion or manipulation to care is illegal
• you are entitled to protection from the impact of the caring role
• you must be involved as soon as possible when hospitals are planning the discharge for the person you care for, including care after leaving hospital
• you can get support to identify which of the person's needs you can help with
• your views should be considered by social care teams when they arrange care for the person you care for
• you have the right to a Carer's Assessment to understand your own needs and the impact of caring on your wellbeing
• you can request flexible working
• you can ask your employer for up to 5 days of unpaid carer's leave each year, adjusted based on your working hours
• you have the right to work, study, train and enjoy leisure activities
• you have rights under civil rights and human rights laws
• you have additional rights under the Equality Act 2010

To find out more Find your local Citizens Advice or visit Carers UK.

See also Being Heard – A self-advocacy guide for carers, published by Carers UK.

Key things to consider

Each hospital has its own policy for when patients can be discharged, based on government advice. You can ask the ward manager or the Patient Advice and Liaison Service (PALS) for a copy of the hospital's discharge information.

Planning for when the person you care for leaves the hospital starts as soon as they are admitted. Tell hospital staff as soon as possible if you are their carer or are thinking about becoming their carer.

A team of healthcare professionals will plan for when it's time to leave the hospital. If the person you care for agrees, someone from the team will talk to you about the plans.

Be aware of any equipment needed at home. Arrangements should be made beforehand. If the equipment needs to be set up before the patient goes home, plans should be made in advance and you should be shown how to use the equipment safely.

Be clear on the details of the care arrangements after discharge, including who will provide the care, when it will start and when it will end, including for discharges to rehabilitation settings.

Understand how the care will be paid for and for how long.

Ask for a clear summary of any changes in medication, listing what the person you care for should be taking now, when to take it and what medications have been stopped.

Ask for a summary of follow-up appointments, including what each appointment is for, who it's with and contact details for those teams or individuals.

Find out about the transport arrangements for discharge. The ward should tell you when the person you care for will be discharged and if they will move to the discharge lounge. If you are not picking them up, you should be notified when they have left the ward or lounge and are on their way home.

Patient Advice and Liaison Service (PALS)

PALS are based in hospitals offers confidential advice, support and information on health-related matters for patients, their families and their carers.

They can:

• help with health-related questions
• help resolve concerns or problems when using the NHS
• tell you how to get more involved in your own healthcare

To find your nearest PALS ask:

• your hospital
• your GP surgery
• NHS 111

You can also search for your nearest PALS online.

Services provided by Luminus

Healthwatch Surrey

Healthwatch Surrey, which is run by Luminus, champions the voice of local people to shape, improve and get the best from NHS, health and social care services. As an independent statutory body, they have the power to make sure decision makers listen to your feedback. Their helpdesk can also provide reliable and trustworthy information and signposting about local health and social care
services to help you get the support you need.

Contact Healthwatch Surrey.

Giving Carers a Voice

We commission Luminus to run the independent Giving Carers a Voice service. This service listens to carers of all ages to make sure
their opinions are considered when designing and delivering the services they use.

Contact Luminus for more information.