Secondary Care – Carer Awareness Training

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    Carers Awareness Training
    for Secondary Care Staff

    Created by The Carers Centre for Brighton & Hove

    Use the Next button to continue.

    Click the Next button or use the right arrow key to continue.

    About this training

    How to complete this training

    Navigate through the pages of this module at your own pace. At the end of each main section, you’ll find a short video that expands on the key points covered. As you go, you’ll also be asked a few questions to check your understanding. Once you’ve answered all correctly, you’ll be prompted to move on to the next section.

    Note: The terms ‘unpaid carer’ and ‘informal carer’ are commonly used interchangeably within healthcare settings.

    What to expect

    This training module will help you identify individuals with unpaid caring responsibilities, understand the support available to them, and explore how your service can become more carer-friendly.

    By completing this module, you’ll be eligible to register as a Carers Champion – someone who voluntarily supports unpaid carers within their organisation and acts as a key link between The Carers Centre for Brighton & Hove and your workplace. Carers Champions will receive a badge and lanyard by post to recognise their role. If you would like to become a Carers Champion, please select ‘Yes, send me a badge and lanyard’ on the next page.

    We can only provide support and resources to Carers Champions based in Brighton & Hove. If you’re based outside the city, you’re still welcome to complete the training and download your certificate of completion.

    To find your local Carers Support Charity, use The Carers Trust Postcode Finder.

    Consent

    Thank you for taking time to find out more about unpaid family/friend carers.

    By entering the following details you consent to us holding data and contacting you about the completion and follow up of this training.

    The Carers Centre Privacy Policy is available here: Our Privacy Policy

    skipcompleting for personal interestwith an organisation, club or group
    skipNoYes, please send me a badge and lanyard

    Welcome

    Welcome video by Tom (1:36)

    Welcome

    Welcome to this free Carer Awareness training session. It is expected that it will take between 45 and 60 minutes to complete.

    Why do this course?

    You may be taking this course out of general interest around caring.

    Maybe you are a carer wanting to know a little more about us and what caring means.

    Possibly you are a representative of a group, organisation, or community, with an interest in becoming a Carer Champion and being able to recognise when someone may have a care role, answer initial questions and know how to signpost to help and support.

    Carer Champion

    By taking this training session and answering the questions that will be asked, you are completing our Carer Champion training and will qualify for a badge and certificate if you wish.

    We also have specific training for employers, primary healthcare staff and people in education though you will not need to complete these if you have already done this training. Speak to us directly about specific support or go directly to the relevant training session on our website instead of completing this session.

    Who we are

    The Carers Centre is a charity formed in 1988 to support the needs of unpaid family/friend carers in Brighton and Hove.

    Since 2018 we have also been the lead partner of a project funded by Brighton and Hove City Council, called the Carers Hub, which provides a single point of contact for carers in the city.

    The Hub comprises four organisations. The Carers Centre, Alzheimer’s Society – helping people with dementia, Crossroads Care, providing short term respite solutions and Brighton and Hove City Council Carer Assessment Workers.

    You are now about to start the first section where we will look at what being a carer means.

    I hope you enjoy the session and wish you all the very best.

    Unpaid carers – some background

    An unpaid carer is a person of any age who cares, without pay, for a family member or friend who because of an illness, disability, mental health challenges or addiction, would struggle without this support. (Carers Trust)

    The economic value of the contributions made by unpaid carers in the UK is equivalent to the cost of a second NHS.(Carers UK)

    Nationally, 7 in 10 carers start their caring journey in an NHS setting.

    (London Discharge Toolkit)

    At least 1 in 12 Brighton and Hove residents have unpaid caring responsibilities.

    (Brighton & Hove Council)

    You are still classed as an unpaid carer even if you receive Carer’s Allowance or other benefits.

    What might a caring role look like?

    Click on the icons below to see examples of the types of support unpaid carers may be providing.

    “I take my neighbour out shopping and check in on her after work.”

    “I help my dad to remember things and prepare his meals.”

    “I help my wife to wash and dress as she can’t stand unaided anymore”

    “I worry about my son when he’s feeling down and I help him to manage his money”

    “I call my nan on
    my lunch breaks to make sure she’s remembered to eat today.”

    “I administer my mum’s medications and do her housework.”

    It’s important to remember that responsibilities such as these indicate someone may have an unpaid caring role, even if they haven’t identified themselves as their loved-one’s ‘unpaid/ informal carer’ on forms or to staff.

    What does it mean to be an unpaid carer?

    Video Lizzie and Steve (4:06)

    Q. So what does it mean to be a carer and specifically an unpaid family/friend carer?

    A. The term “carer” is quite generally used in society and can mean someone who is a paid professional and maybe works in a care home or for an agency.

    We define it as people who provide unpaid care for family, friends, neighbours etc. not healthcare professionals!

    Q. Can you give me an example?

    A. As we mention in the information you just saw, every situation is unique for family friend carers: age, who they care for, the reason for the care, financial resources and care they provide, all vary.

    It could be a young adult carer looking after a parent with a mental health challenge.

    Maybe someone looking after their partner with cancer or a neighbour looking after another neighbour who requires additional support due to frailty and older age.

    Q. So how does this affect people?

    A. It can be life changing. A caring role can happen overnight or be a gradual progression.

    For example, caring for a person after an accident or stroke has different initial requirements compared to looking after someone with dementia or frailty due to age.

    Q. Do carers have to live with the person they help?

    Not at all. They might even live in a different city.

    They may also be managing their own health conditions.

    Carers may become vulnerable as caring can be stressful and lead to a risk of illness. Some other ways they can be impacted include:

    Being isolated from friends and social events.

    They will probably suffer a negative financial impact.

    Almost certainly they have less personal freedom because of the support they provide.

    Q. So does everyone think of caring as a role and get help?

    A. Absolutely not.

    It can take a while for someone to realise they have a caring role, it is not unusual to hear carers say,

    ‘I am just looking after my wife’, or ‘She is my mum and so I want to look after her’.

    A caring role can mean very different things and it is important to also understand that there are sometimes cultural expectations and worries that carers may have about seeking support.

    Q. So carers roles are not all the same?

    A. Exactly.

    Carers experiences are unique even though there might be similarities.

    What one may be able to manage another may find incredibly challenging.

    For example, someone in full time work may not have the time to support the person they help go to appointments.

    A carer may feel they will be judged on their caring role or even that the person they care for will be removed.

    Q. So how could we sum up the term unpaid family/friend carer?

    A. It’s probably easiest to think about impact: if you help another person to live their life and that begins to prevent you from being able to do things in your life that are important and support your wellbeing, then you may want to think about accessing support.

    Q. What support?

    A. Well, the Care Act 2014 says that carers have a right to have their own needs assessed by the local authority. This is separate from any assessment of the person being helped.

    There is no legal requirement for people to take on a care role but anyone who thinks they might be a carer can call us or complete our online referral and we will carry out a free assessment with them. If they need greater support, we will refer them to BHCC for a full assessment.

    Q. I’ve heard about Carers Allowance?

    A. There is an allowance that some carers can claim but they are still seen as an unpaid carer.

    Q. What about if someone is working as well as caring?

    A. For working carers and employers, there are resources that are available which have been created by Carers UK.

    The Digital Resource for Carers is available to any carer in Brighton and Hove. You can get details from the Carers Centre.

    Here at the Carers Centre, we also have fact sheets and other information for working carers and a specialist working carer lead.

    Barriers to identifying as an unpaid carer

    On average, it can take 2 years for someone to identify themselves as an unpaid carer (Carers UK). There are many reasons for this reluctance, and it can make it more challenging to begin conversations about support available for carers. But, by understanding these potential barriers, we can more easily open up the conversation and encourage people to access support.

    Video Lizzie and Steve (2:48)

    Q. What barriers might there be to someone seeing themselves as a carer?

    A. Well, unfortunately there are quite a lot.

    Some might be cultural or religious – the person providing the care might feel that it is just the normal or right thing for them to do – they have a sense of duty to provide the care. In some cultures, there can even be feelings of shame that care is having to be provided.

    Q. What about examples where it’s not cultural?

    A. It might be the case that the caring has evolved out of normal life, such as people living together who naturally help each other but maybe frailty has led to more reliance on one person.

    There are also people who just don’t want to be a burden or have people “interfering” in their lives.

    Q. Does the word “carer” ever become an issue?

    A. Sometimes the term itself is a barrier either because it is thought of only as for professionals or, people don’t want to be labelled in this way – they might feel their relationship is diminished by the term. We often hear “I’m their partner/wife/husband not their carer”.

    Q. Are there any other barriers?

    A. Time to register can be a problem too and especially where the carer may have work as well.

    Some people might think they have to be receiving carers allowance.

    For working carers, there can be fear that they will miss out on promotion or other opportunities if they reveal they have a care role.

    Lastly, getting information and registering as a carer might be quite scary if English isn’t your first language, you don’t have the internet or maybe the information is not presented to you in a way that you can access or understand.

    Q. So how might I approach someone to find out if they are a carer and see if there is support they might need?

    A. The easiest way is to just ask about their circumstances in a friendly, relaxed manner.

    You could say something like, “Do you help your mum out?” or “Have you ever thought about getting help with your partner?”

    This naturally leads onto opportunities to signpost the support that is available via organisations like The Carers Centre/Hub.

    Q. Finally what might a care role actually look like?

    A. As we said before, each situation is unique but there are some common things that carers do.

    They might be providing practical help with things like washing, cleaning, cooking, shopping etc.

    They might assist the person to take medication or provide personal care such as helping them to visit the bathroom, shower etc.

    The help provided might be about financial matters or it could be giving the person emotional support.

    The key is that without that support, the person would not be able to cope.

    Quiz 1

    How might we define family/friend carers?

    Please select True or False.

    They provide professional care

    False. Family and friend carers are not professional carers - they provide unpaid, informal support.
    That's the right answer.

    They must be registered as a carer with an organisation

    False. While registering can help access support, it’s not a requirement to be considered a carer.
    That's correct.

    They provide support to a family member or friend who would struggle without this help

    That's true.
    False. This is a key definition of a family or friend carer—they step in to support someone who relies on them due to a health condition.

    They must live with the person receiving care

    Yes, that's right.
    False. Carers can live separately and still provide essential support, either in person or from a distance.

    How many carers start their caring journey in an NHS setting?

    That’s not correct, nationally, 70% of carers start their caring role in an NHS setting
    That’s correct, nationally 7 in 10 carers start their caring journey in an NHS setting. This may be because someone has received a new diagnosis or a person’s condition has progressed which means they may now require more support.

    If someone receives Carer's Allowance or other benefits, are they still an unpaid carer?

    Incorrect. Receiving Carer’s Allowance or other benefits doesn’t make someone a paid or professional carer—these are support payments, not wages for services.
    Correct. Carer’s Allowance is a benefit to support unpaid carers—it doesn’t mean the person is being paid for the care they provide.

    Well done, now click NEXT to continue.

    What about young carers?

    Young carers are people under the age of 18 who provide care and support to someone close to them – often a family member – who may be living with an illness, disability, mental health challenge, or substance misuse issue. While this person is often a part of the same household, young carers may also support someone they see regularly, even if they don’t live together.

    A young adult carer is someone aged between 18 and 25 who provides support to someone, often they are continuing a caring role from childhood, but they may also be taking on this responsibility for the first time as a young adult.

    Young carers/ young adult carers may be supporting a number of different family members in a variety of ways and the young person may find that, as a result of the family member’s condition, their own daily activities, or the support available to them, are affected. While there is no ‘one-size-fits-all’ summary of the support a young carer may provide, a young caring role often involves taking on responsibilities or tasks typically carried out by an adult or considered inappropriate for their age.

    The types of responsibilities a young carer or young adult carer may take on include:

    • Practical care – Domestic chores, managing money, looking after siblings, locking up the house
    • Physical care – Lifting, pushing a wheelchair, helping with stairs, exercises or using equipment
    • Medical care – Administering medication or injections, organising/attending appointments
    • Personal/intimate care – Washing, dressing, feeding, toileting
    • Emotional care – Listening to/supporting the cared for person, comforting or being present.

    Identifying & supporting young carers

    Video Lizzie (2:31)

    What do we mean by ‘Young Carer’ or ‘Young Adult Carer’?

    A Young Carer is a young person under the age of 18 caring for someone in their family while a Young Adult Carer usually refers to someone age 18-25. They may be supporting a family member for various reasons, including someone with a long-term health condition, disability or substance misuse issue. This is usually someone who the young person lives with such as their parent or sibling but can include other family members they see regularly.

    How might a Young Carer help out?

    Young Carers can provide support in different ways, for example they might carry out practical or physical tasks, or support with medical or personal care. Many young carers are also providing emotional support, for example to family members with a mental health condition. This type of care goes unseen by others but provides much needed support to the family member. Often young people are not even aware that what they are doing is considered caring.

    How does this affect a Young Carer?

    Depending on the level of support a young person provides, their caring responsibilities can have a significant impact on their health, education or social life. For example, inappropriate levels of care can impact on a young person’s own emotional or physical well-being. They may feel tired from getting up in the night to support their sibling or be anxious or fearful about their parent’s health. Looking after someone can also impact on a young person’s social life or educational achievement as they may have less time to spend with friends, or to do homework.

    What support is available?

    The Young Carers Project supports young people living in Brighton and Hove aged 6-17 to access the help they need to manage their caring role and its impact. The Carers Hub also supports Young Adult Carers up to the age of 25. We offer 1:1 emotional support so young people can have someone to talk to about their caring role and better understand their family member’s condition or disability. We advocate on the young carer’s behalf with other professionals to ensure they get the right support and to limit the impact of the caring role.  Young carers can meet others in a similar situation at our activities which run after school and in the holidays, giving them much needed respite time and the chance to relax and have fun together.

    A young adult carer’s story

    Video Becca (1:39)

    I’m Becca, I’m 17 and I love online shopping.

    I’m not really sure what I want to do with my life, I didn’t do that great in school – so I’m trying to do a part time maths course at college, but I can’t always focus when I’m in class.

    Dad says I should be doing money management instead. He jokes about it, but I do get worried about how much I spend sometimes. Addmitidly, that new kitchen bin wasn’t necessary but I try to buy useful stuff for the house.

    I cook and keep the place tidy to help Dad because he can’t get around easily.

    Sometimes everything gets overwhelming though. I haven’t been doing well in lessons. The teachers probably think I just don’t care about my grades. I’d had a horrible day the day before one of my exams, I was trying my best to revise and there was a crash from downstairs, I ran down and dad was on the floor. I couldn’t lift him, my head was spinning and I panicked. I couldn’t find the right words to describe what was happening. It was awful.

    The paramedic saw what I was dealing with alone and recommended I get some support.

    They helped me with lots of my worries and they’ve even been showing my how to budget.

    Shopper, meal provider, house tidier, sugar checker, washer upper, wheelchair driver, kettle boiler, emergency sorter, translator. Becca is a carer. Are you?

    Quiz 2

    Which of the following are reasons a young carer might be looking after a family member?

    Please select all that apply.
    That right, all of these are possible reasons.
    Young carers take on responsibilities out of necessity, not as a form of career preparation.

    How may a caring role impact a young person’s life?

    Please select all that apply.
    That right, a caring role can affect many aspects of a young person's life, including their health, education, and social interactions.

    What kind of support might a young carer need?

    Please select all that apply.
    That right.
    That's incorrect, more chores can increase stress and young carers should receive support to protect them from inappropriate levels of caring.

    Starting the conversation

    Rather than asking directly, “Are you a carer?”, we can take a gentler approach by exploring who helps the patient at home or what kind of support family and friends might be providing. This helps open the door to support without imposing a label.

    Click on the icons below to see some ways we can begin the conversation about caring

    Asking the patient:

    “Does anybody support you at home?”

    Asking the patient and/ or their carer:

    Would you/ they find things more difficult without their/ your support?

    Asking the patient:

    “Would you like … to be involved in decisions about your health and care?”

    Asking the carer/
    potential carer:

    “Are you helping your mum with… washing, meals…?”

    Asking the carer/
    potential carer:

    “If you are helping your …There is support and information available to you …”

    There are many reasons why someone might not identify as a carer for a loved one, or describe themselves that way if asked directly. This hesitation can stem from a caring role that has gradually evolved over time, a sense of familial duty — “she’s my daughter, of course I help” — or cultural expectations around caregiving. For some, the term “carer” may feel too clinical of a way to describe their relationship to their loved-one.

    Additionally, people may be reluctant to seek support, or face barriers such as language differences or unfamiliarity with technology that make accessing services more difficult. Even if someone doesn’t initially recognise or label their role as “caring,” they are still entitled to support. Often, once people understand that being identified as a carer can lead to practical benefits — like greater recognition from healthcare professionals — they may feel more comfortable with the term, without feeling it diminishes the closeness of their relationship.

    Carers’ rights in law

    In recent years, the law supporting unpaid carers has been strengthened, along with the requirements for local authorities and other public bodies to take steps to identify people in caring roles and offer them support.

    The main pieces of legislation governing unpaid carers are: The Care Act 2014, The Children and Families Act 2014, The Health and Care Act 2022, and most recently, The Carer’s Leave Act 2023.

    The Health and Care Act 2022 strengthens the rights of unpaid carers, of all ages, to be involved in the health and care decisions for the person they support.

    • Duty placed on all NHS Trusts to involve carers, where appropriate, as soon as feasible in discharge planning for the person they support.
    • Duty placed on ICBs to promote the involvement of carers in decisions about the care of the person they support, including decisions about prevention diagnosis, treatment and care.
    • Requires NHS England and ICBs to consult carers when commissioning services or making changes to existing services.

    The Carers Leave Act 2023 entitles unpaid carers juggling work and caring to one working week’s worth of unpaid leave to cover caring responsibilities.

    • Entitles unpaid carers to one working week’s worth of unpaid carers leave in a 12 month period. – A ‘week’ is defined by your employment contract, if you work full time, you are entitled to 5 days leave, if you work 3 days a week, your entitlement is 3 days etc.
    • It is an entitlement from day-one of someone’s employment.
    • It can be taken flexibly, in full or half days, for planned commitments.
    • You have to notify your employer in advance of taking carers leave.

    To find out more information on The Health and Care Act 2022 or The Carers Leave Act 2023:

    Carers’ rights in law

    The Care Act 2014 governs the rights of adult unpaid carers and adults with care and support needs.

    • Gives unpaid carers the legal right to recognition and support.
    • Clarifies that carers have the right to choose whether to take on or continue an unpaid caring role.
    • Grants unpaid carers the right to request a ‘Carer’s Assessment’ from the local authority and have ‘eligible needs’ met.
    • General duty placed on local authority to promote a person’s wellbeing.

    The Children and Families Act 2014 covers young carers, children with care and support needs and adult carers for children with additional needs.

    • Expands the definition of ‘young carer’ to cover children who may provide care for somebody in the future:
      • ‘A person, under the age of 18, who provides, or intends to provide, care for another person.’
    • Requirement for NHS bodies to cooperate with local authorities regarding duties to carers and young carers.
    • Grants young carers and parent carers the right to an assessment of their own needs. Requires local authorities to take ‘reasonable steps’ to proactively identify young carers.

    To find out more information on The Care Act 2014 and The Children and Families Act 2014:

    Supporting carers in secondary care

    Secondary care staff are uniquely placed to identify and offer support to unpaid carers. Caregiving is increasingly being recognised as a social detriment to health (Public Health England) and so, by taking steps to support carers early and robustly, we can help prevent avoidable admissions and improve health outcomes for both carers and their loved ones.

    As we’ve just seen, public bodies including local councils and the NHS, have legal duties to support unpaid carers, but notwithstanding just complying with legislation, including carers in decision making can have further benefits including improving care planning and reducing failed discharges.

    Unpaid carers are experts in their loved one’s needs. They will know what is likely to motivate them to engage with treatment.

    Having unpaid carers present on wards can reassure the patient and help them cope with an unfamiliar hospital environment.

    Carers may know what is likely to be realistic once the patient is home.

    Improved communication can result in fewer failed discharges.

    Smoother discharges reduces the cost of delays in transfers of care.

    Helping carers to receive support earlier in their caring journey can safeguard their own wellbeing and help prevent carers breakdown.

    Click on the icons above to see how involving unpaid carers can benefit secondary care.

    Quiz 3

    What are some reasons a person might hesitate to identify as a carer?

    Please select all that apply.
    That's correct, these are all possible reasons.

    Which of the following phrases are most helpful when starting a conversation with someone you think may have a care role?

    Please select all that apply.
    Yes, these more open questions can be a gentler way of exploring someone's home situation and beginning conversations about caring roles.
    This may not be the most appropriate way of asking about someone's caring situation. Initially, people often don't recognise the support they provide as being someone's 'carer'.

    Consent & confidentiality

    Confidentiality is often cited as a reason for not seeking to involve carers in conversations and decisions about the patient’s health and care. It is important to remember that, even where the patient has not provided consent, their carer can still be provided with general information not linked to the patient and staff can still listen to worries or queries the carer may have.

    Click on the following scenarios to find out more:

    If the patient has provided informed consent for their carer to be included in decisions about their health and care, then:

    • Carers should be included in all best interest decisions
    • The carer’s details should be recorded on the patient’s record
    • Staff should avoid assuming that the patients next of kin and their unpaid carer will automatically be the same person
    • Providing the patient’s wishes remain central, carers should be included in the patient’s future care planning

    Where the patient has not consented to their carer being included in decisions about their health and care, the carer can still be supported in their own right. In this case:

    • Practitioners can still take the time to listen to concerns the carer may have without breaching patient confidentiality
    • Record the carer’s status as a carer on their own medical record (if they consent to this)
    • Provide the carer with generalised information not linked to the patient

    In either case:

    Regardless of whether or not the patient has consented to their carer being involved, carers still have their own rights to access health and support.

    As such, carers should still be informed about and offered the following:

    • Offered a referral or signposted to their local carers support charity
    • The hospital’s commitment to unpaid carers and what they can expect
    • Encouraged to register a Carer’s Contingency Plan
    • Informed about their right to a Carer’s Assessment

    Further considerations

    It is important to remember that there is no obligation or responsibility for someone to take on or continue being another adult’s unpaid carer. People have the right to choose how much care they feel comfortable and able to provide, and those decisions should be respected.

    In some cases, a patient may have more than one unpaid carer, or their unpaid carer and next of kin may be different people. In these cases, it can be helpful for ward staff to ask the patient and their support network who they would prefer to act as the main contact point. This helps keep communication clear and avoids the stress of sharing the same information multiple times.

    Staff should also keep in mind the possibility that the patient themselves has a caring role for a loved-one out in the community. It’s important to ascertain if this is the case and, if so, make sure that that person has appropriate support during the time their carer is in hospital.

    Emergency Backup Plan:

    An Emergency Backup plan (EBUP) is a document detailing what should happen if a carer is unable to support their loved one due to illness, a family emergency or other unforeseen circumstance – In some areas, this is known as a Carer Contingency Plan. The plan details the needs of the person requiring care and names trusted individuals who may be contacted to step in temporarily. It is important that this plan is updated when there are any changes of circumstance so that the information remains as accurate as possible.

    If a contingency plan has not already been set up in advance and the carer suddenly found themselves admitted to hospital, it would not be something the family could make use of during that admission. However, it is still valuable to inform the patient and their family or representative about the scheme so they can consider registering so it’s available in future emergencies.

    In Brighton & Hove, the scheme is completely free. If no nominated contacts are available or listed, the carer and cared-for person can opt to consent for Crossroads Care to provide emergency support. In such cases, care will be delivered by Crossroads free of charge for up to 48 hours in the week or 72 hours on weekends/ bank holidays. For more information, please see Brighton & Hove Council’s webpage: Brighton & Hove’s Emergency Backup Scheme for Carers

    Referring unpaid carers for support

    The appropriate carer support charity to refer an unpaid carer to—or to encourage them to contact directly—will depend on the local authority area where either the carer or the person they support resides.

    In Sussex, there are three dedicated carer support charities, each serving a specific area: East Sussex, Brighton & Hove, and West Sussex. The government’s  ‘Find your Local Council’ tool can be used to check the correct local authority for a particular location.

    If the carer or the person they care for lives outside of Sussex, the Carers Trust postcode finder is a helpful tool for identifying the relevant local carer support organisation.

    In Brighton, Hove and East Sussex parent/ family carers for children under the age of 18 can receive support from the charity Amaze.

    Support for carers in Sussex:

    The Carers Centre for Brighton & Hove (AKA Carers Hub)
    Professional Referrals  |  Self Referrals 
    01273 746 222

    Care for the Carers, East Sussex
    Professional Referrals  |  Self Referrals 
    01323 738 390

    Carers Support, West Sussex
    Professional Referrals  |  Self Referrals 
    0300 028 8888

    Amaze (Supporting parent/family carers of children under 18 in Brighton, Hove and East Sussex)
    Self Referrals 
    01273 772289

    Support for carers in Brighton & Hove

    Video Lizzie and Steve (2:42)

    Q. So who helps unpaid carers in Brighton and Hove?

    A. The Carers Hub is the first point of contact for all unpaid carers in the city except if you are a parent caring for a child, you will be supported by Amaze.

    Q. How does someone register?

    Carers can be referred by professionals such as GPs or they can self-refer. Both can be done by phone or online.

    Q. What happens and is it free?

    A. Yes, it’s free.

    When a carer comes through, we send out information packs and follow up with a call.

    Part of the call discusses the type of support they would like to access. 

    We will offer a Carer Contact Assessment, which is part of a Brighton & Hove City Council carers assessment.

    Q. What else is available for carers?

    A. All carers who choose to have a Carers Contact Assessment will be eligible for a carers card. This card gives carers discounts off things across the city, including bus fares, discounts at freedom leisure and much more.

    Q. Anything else you offer?

    A. Yes, quite a lot.

    We have a number of projects and services including a large number of weekly activities. These are constantly refreshed and updated, so check our website for the latest information. 

    We also have a quarterly newsletter Carers News that carers and professionals can sign up to.

    Q. What about specialist support?

    We have specific support for carers who are looking after someone with a mental health challenge – this service is called Changes Ahead and offers one to one emotional support and a specific monthly meet up.

    We also support carers who are looking after someone with an end-of-life condition and offer one to one emotional support.

    Q. it sounds like quite a lot so far. Is there anything else?

    A. Yes. We support carers, with access to the My Health Matters service through Crossroads. This provides someone to be with the person being cared for while the carer attends their own health and wellbeing appointments.

    We also support carers with direct referrals to the Alzheimer’s Society where they can get specialist dementia support.

    And as mentioned previously, we also support young people to manage their caring role and it’s impact. The Young Carers Project supports young carers from the age of 6, and young adults up to 25 through the Carers Hub. They are offered emotional support and advocacy as well as opportunities to meet other young people for peer support and to take part in activities.

    We know that is a lot to remember, so please feel free to give us a call or check our website for information.

    Support for UHSX staff

    Staff Network

    The University Hospitals Sussex Trust has a wide variety of staff networks – safe spaces for staff with shared characteristics/ experiences or allies – to come together to support each other. The UHSX Staff Carer Network supports staff (of any role) with caring responsibilities outside of work. The network offers members an opportunity to discuss their experiences and build relationships with colleagues who understand. The network also works to improve the experience of unpaid carers working or accessing services within UHSX and runs a year round program of events. These include information stalls at Trust sites, seminars and conferences aimed at raising awareness and offering support. Network meetings are held in a hybrid format, so attendees may join either in person or via Microsoft Teams. If you wish to attend in person, please note that locations vary.

    Please see UHSX Carers Network for more information.

    Staff Carers Passport

    The Trust offers a Staff Carers Passport scheme, available to any staff member with caring responsibilities outside of work that may impact their ability to carry out their role—now or in the future. The purpose of the passport is to support open and constructive conversations between the carer and their manager. It provides a structured way to identify and record any flexibility needed to help the staff member balance their work and caring responsibilities. The passport is designed to reduce the need to renegotiate these arrangements if the staff member changes roles, departments, or line managers. It is a confidential document shared only between the carer and their manager. While participation is encouraged, it is entirely voluntary.

    Please see Information on UHSX Staff Carers Passport for more information.

    Employers for Carers (EFC)

    UHSX has recently subscribed to the Employers for Carers (EFC) resources from Carers UK. These resources are designed to help staff juggling work with a caring role and support managers to provide a more inclusive environment for working carers.

    To access the EFC resources using the trust’s free access code, visit efcdigital.org and use code EFCB3103.

    Support for UHSX service users

    Carers Passport

    Hospitals across the trust have implemented a Carers Passport scheme for unpaid family/ friend carers accessing secondary care services. Carer’s Passports are designed to identify and support the carers of patients by enabling them, if they so wish, to be involved in their loved one’s care whilst in hospital and granting the carer access to supportive benefits such as flexible visiting hours. Please note that the specific benefits vary between hospitals, so we recommend checking with your local hospital for full details of their scheme. Carers Passports are available on hospital wards and can be requested from the nurse in charge.

    John’s Campaign

    UHSX is a supporter of John’s campaign, a scheme recognising that people living with dementia have the right to be supported by their loved-ones during hospital stays. The campaign also champions the rights of unpaid carers to continue providing practical, hands-on care—such as assisting with meals—if they choose to do so. John’s Campaign is designed to respect the wishes of the patient and values their informal carers as ‘experts by experience’.  Enabling familiar, trusted individuals to stay involved can provide reassurance and promote better health outcomes for those living with dementia.

    At the same time, the campaign recognises that a hospital admission may offer carers a much-needed opportunity to rest—perhaps for the first time in years. While their involvement is welcomed, it is equally important that carers never feel obligated or pressured to provide care during this time.

    For more information, please see Johnscampaign.org

    PALS

    The Patient Advice Liaison Service (PALS) is available to help patients and relatives/ carers to be better informed about hospital services and can help facilitate communication with wards should this be proving difficult or you have concerns you would like addressed on your behalf. PALS are also able to pass on positive feedback or can advise you on how to make a complaint. For more information, please see About PALS?

    Carers priorities for discharge

    We recently partnered with the Sussex Integrated Care Board and the Royal Sussex County Hospital to explore carers’ perspectives on the new South East Discharge Toolkit.

    The toolkit is designed to support a more joined up approach between hospital staff and patients/ carers in order to plan for smoother transitions of care. It also provides a comprehensive roadmap as to how hospitals can most effectively meet their legislative duties to carers.

    As part of this research, we engaged with unpaid carers to understand which elements of the toolkit they felt could make the most impactful difference to their experience of secondary care services.

    Many carers shared that having staff who recognise and understand their role made a significant difference to how supported they felt during their hospital journey. These insights lead to the creation of this targeted training for healthcare staff.

    Carers stated their experience of secondary care services could be improved by:

    • Receiving advance notice of the expected discharge date
    • Being given a copy of the discharge plan, including a named contact for post-discharge concerns
    • Clear communication about any changes in the patient’s care needs during hospitalisation
    • Having transport arrangements discussed and agreed with the carer in advance
    • Receiving training on the safe use of any medical equipment provided to the patient

    Feedback

    Thank you for taking the time to complete this Carers Awareness Training, we welcome any feedback you may have about how you found this course.

    If you have any further questions, or would like to arrange an in-person training session for your team, please contact onlinetraining@thecarerscentre.org

    Stay informed

    The Carers Centre is proud to lead the Carers Hub, Brighton & Hove’s single point of contact for carers, ensuring easy access to essential support. The Hub is a partnership between The Carers Centre, Alzheimer’s Society, Crossroads Care, and Brighton & Hove City Council, working together to make life easier for carers across the city.

    Sign up to receive our quarterly Carers News booklet and fortnightly E Newsletter.

    Tick here if you’d like to subscribe to our mailing list.

    Carers Hub, Brighton & Hove
    For adult carers aged 18+
    Info@carershub.co.uk
    01273 746 222

    Young Carers Project, Brighton & Hove
    For young carers aged 5+
    youngcarersproject
    @thecarerscentre.org
    01273 746 222

    Save these contact details and a summary of this course as a PDF.

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