Cambridge University Hospitals NHS Foundation Trust (CUH) recognises the essential role played by carers, families and friends in supporting our patients. We aim to work together to ensure that the best possible care is provided and patients and their carers are fully supported.
As part of CUH's commitment to carers, CUH has pledged to meet the good practice that John's Campaign advocates.
Our Trust is committed to working in partnership with carers to provide person-centred care. We value carer expertise and the vital role they play. They are welcomed outside visiting hours on all adult wards and encouraged to discuss their needs with the nurse in charge.
CUH John's campaign pledge
Carers are essential for the health and wellbeing of the person they care for and we recognise that patients who are supported by their carers have improved prospects of recovery and staying well. We want to provide the best possible care and treatment for our patients, and part of that aim is to work alongside and provide support and advice to carers.
This handbook is part of our commitment to work closely with all carers as partners. It describes what you as a carer can expect from our services and how you can get the help and support you need. Caring for someone can be physically, emotionally and practically demanding: CUH values the care and support provided by all carers.
How do you know if you are a carer?
You are a carer if you provide help and support, unpaid, to a family member, friend or neighbour who would otherwise not be able to manage without this support. The person you care for may have a physical or learning disability, dementia or mental health problems or they may misuse drugs or alcohol. Whatever their illness, they are dependent on your care. The person may live with you or elsewhere, they may be an adult or a child, but if they rely on you for support, then you are entitled to support as a carer. Anyone can become a carer. Carers come from all walks of life, all cultures, and can be any age. You may be a wife, husband, parent, partner, friend, uncle, niece, colleague or neighbour. No matter what your relationship, if the person you care for cannot manage without your support then you are a carer.
How do you know if you are a young carer?
Young carers are children and young persons under 18 who providecare, assistance or support to another family member who is disabled, physically or mentally ill, or has a substance misuse problem. They carry out, often on a regular basis, significant or substantial caring tasks, taking on a level of responsibility that is inappropriate to their age or development.
Some of the ways young people care for someone are:
- Staying in the house a lot to be there for them
- Helping them to get up, get washed or dressed, or helping with toileting
- Doing lots of the household chores like shopping, cleaning and cooking
- Looking after younger siblings
- Providing emotional support or a shoulder to cry on
How you might be feeling as a carer
Carers say that the role of a carer can often be very rewarding and report a great sense of pride in what they and the person they care for achieves. At the same time, carers report some negative feelings and mixed emotions. Having to cope with a dependent adult or child whose needs may be complex can be a difficult situation and one for which you feel unprepared. For example, you may feel that your carer role has changed your relationship with the person you care for and has affected your relationship with other family members, and even changed you too - maybe it has made you feel more anxious and stressed?
You may have other responsibilities in addition to your carer role, such as work and family, and you may feel that you have too much to do. Over time this can become exhausting. You may also feel that your efforts are not appreciated and feel resentful about this. Your caring role may have stopped you from doing the things you love which may make you feel angry. You may feel isolated and sad. The demands on your money, time and patience may seem relentless and with so many challenges and difficulties you may find you are feeling frustrated and demoralised, worried and unable to cope. Above all, you may feel you lack basic information to help you to fulfil the role of carer.
Staff at CUH are aware of how difficult the carer role can be and value the vital work done by carers. By providing you with this handbook we hope you will feel better informed, supported and more positive about your role as a carer, leading to an improved level of personal satisfaction for you as the carer and to an improved sense of wellbeing for the person you care for.
Our commitment to carers
Cambridge University Hospitals NHS Foundation Trust (CUH) recognises the essential role that carers take on in supporting people with health problems and disabilities. The Trust also recognises the impact that caring responsibilities have on carers and that there is a need to support and help people in their caring role.
We aim to work with local support services, and directly with carers, to develop effective partnerships and ensure that carers are well informed and supported to be a carer for as long as they want to be. We believe that carers should be able to seek the support they need at the time that they need it whether that is from us or from another provider/service. This handbook is designed to give you as a carer an overview of what to expect from CUH and information about the support and resources which are available to you.
How can we support you - useful information for when you are at CUH
Assessing what you need as a carer
The Care Act 2014 gives equal rights to adult carers as the person they are caring for. Local councils and health organisations are now required to promote the wellbeing of all carers, ensure information, advice and support is available, and to prevent, reduce or delay unpaid family carers reaching crisis point.
For most of the Trust’s patients, the organisation responsible for delivering information, advice and guidance to help family carers access the right support is Caring Together.
Both CUH and Caring Together want to support your needs as much as possible, and the best way we can give this support is to provide you with a carer assessment. This is a way of finding out what support you might need, not an assessment of your ability as a carer.
This can be requested at any stage of the carers journey. The Care Act 2014 entitles all carers to a carer assessment on the appearance of need. This is irrespective of the level of support you are providing someone, or financial circumstances. The person you care for does not need to be in receipt of services for you to have an assessment of your own needs as a carer.
You are also able to request a review of your needs at any time should your circumstances change. Carers assessments are carried out by the local authority of the carer.
If you live in Cambridgeshire, carers needs assessments are completed by the Early Help Team at Cambridgeshire County Council. If you live in another county, please contact your local county council for further advice.
If appropriate, we encourage the carer and patient to be involved in these discussions together so that we can ensure you both have all the support you need to carry out your caring role. However, this should be your choice and you should not be made to do this if you would rather be assessed separately.
It is important that you take time to prepare for your assessment.
The carer assessment
All carers should be offered information, advice and guidance to universally accessible services to help them stay healthy and well as a minimum. This might include help to make a contingency plan or claim welfare benefits.
Depending on the outcome of your carer assessment, you may be offered a range of support. Carers with eligible needs may also be entitled to Self-Directed Support (SDS) which provides you with a personalised budget and allows you to choose how your support is provided.
After the assessment
Depending on the outcome of your carer assessment, you may be offered a range of support. Whilst you are still undertaking a carer’s role your assessment should be reviewed regularly to identify any changes to your personal circumstances. This usually takes place annually, but if there are significant changes to your circumstances then please ask for the review to be brought forward.
Contingency plans for carers (also called back-up plans or 'what-if' plans)
Many carers worry what would happen if for any reason they are unable to provide support to the person they care for. For this reason, it is sensible to prepare a contingency plan with you so that you can make arrangements for any support that needs to be provided in your absence and if/when an emergency arises.
Your contingency plan may contain details such as:
- A contact name and number of someone who is willing to help in an emergency, such as a relative or friend
- Details of the support provided for the cared for person
- Whether there are any access issues to the cared for person’s accommodation
Contingency plans can be shared - with your consent - across multiple agencies.
This could include sharing a plan with a GP or social care provider.
Getting regular support
Carers may need support in relation to the person they care for.
Confidentiality and information sharing
If you are supporting a friend or family member who is in hospital or who has outpatient appointments, we understand that sharing information with you about the patient and their care can be vital in allowing you to provide the support they need and help us to provide the excellent care we aim to provide.
Information about the patient’s medication and treatment plans can help you to provide day to day support, plan for the future and know where to get help and advice if needed. Sharing information must be done in partnership between patients, carers, families and hospital staff. We will ensure that you receive as much information as possible to help you in your caring role. You should be given enough information in a way that you can readily understand to help you provide care.
When can't information be shared?
The relationship between the healthcare professional and patient is based on having confidence or trust that what is said will not be disclosed without their agreement. We are required by law not to share information without the consent of the patient. In some cases this could mean that the patient refuses to let us share information about their care with their carer.
We understand that these situations may be difficult for carers and we will always listen to any concerns and try to find a way of offering support and information without jeopardising the confidentiality of the patient. As a carer you are likely to have known the person you care for before they became unwell. We acknowledge that you may have key information relevant to how we provide safe and effective care for them. You will likely be aware of what may influence their wellness. We will encourage you to share this information because it will help us to provide the best possible care and support for the person you care for, as well as giving you a positive role and confidence in what we are doing.
There may also be times when a carer shares personal information with us about themselves that they do not wish the patient to know. We have the same obligation to not share this personal information without your consent. This includes information you may share with us about how you are feeling or coping in your caring role.
We will still give you information which is not personal to the patient, and try to help you in your caring role by discussing any worries you may have and how you can access support. We can also discuss information about the patient that you already know.
Issues around confidentiality should not be used as a reason for not listening to you. We will discuss with patients the need for you to receive information so that you can continue to support them.
Information sharing and good practice
We will discuss confidentiality and information sharing with the patient and carer at an early stage, and record views on information sharing.
We will discuss with the patient if they would like to keep any information confidential to hospital staff.
We will explain to carers and families what information can be shared, and if information cannot be shared, tell you the reasons why.
We will continually review information sharing with patients, carers and their families while the patient is under our care.
How can information be shared?
We will give you information verbally, for example updates about the patient’s condition, treatment and progress. We will also tell you who is involved in the patient’s care.
We will give you written information where possible, for example leaflets about a patient’s condition, or the treatment or medication they are having.
Understanding hospital admission/discharge
Periods of inpatient care can be an additional burden for carers. The uncertain situation may increase anxiety and stress levels whilst the emotional and physical strain of hospital visits may lead to greater exhaustion. Having access to information about diagnosis and treatment can help to alleviate concerns and as a carer you have a right to this information. Please ask staff on the ward for help and access to the healthcare professionals who are caring for the person you care for.
The period after discharge from hospital can be a particularly difficult time for both patient and carer: extra emotional and practical support may be needed and it is important that you are fully prepared and know what to expect.
Medication
If you are caring for someone using CUH services, they may have been prescribed medication. Everyone has the right to make an informed decision about which medication(s) to take and the Trust wants to support the patient and the carer to make an informed decision. Patients can talk about their diagnosis and about any prescribed medication to healthcare professionals involved in their care such as their doctor, nurse or pharmacist. Carers can also speak to these healthcare professionals if they have any questions.
When a medication is dispensed by a pharmacy it will usually be supplied with a Patient Information Leaflet (PIL), a useful source of information that explains what a particular medication is for, how it should be taken, and possible side-effects.
Legislation
As a carer you have specific legal rights and entitlements as stated in the Care Act 2014, which came into effect in April 2015. Amongst other changes to the way care is provided, the Care Act significantly increased the rights of carers to get the support they need, at the time they need it.
Knowing your rights can help you to get the support that you need. We have summarised below some of the most important aspects that we think are useful for carers to know.
Benefits and respite
It is often the case that many carers do not recognise they have become carers and therefore do not realise their entitlement to claim a range of benefits. To enable you to ascertain your rights to financial support and benefits, it is important to arrange a carer assessment because this will identify the level of financial support and benefits you are entitled to. This is about meeting your needs and understanding how caring affects you.
This section covers two areas:
- Benefits - government benefits that you may be entitled to
- Respite - localised resources that support you to carry on caring
Benefits
Respite
Respite in the context of caring means that you receive support that provides you with some assistance or temporary relief in your caring role. This could mean that you are able to take a short break for an hour or two a week, have a day to yourself or a holiday.
Understanding the diagnosis
Caring for someone who has a physical or mental health condition or learning disability can be more difficult without the benefit of clear information about the diagnosis, treatment options and medication.
Understanding the diagnosis enables you to plan for the future and may mean other health and social needs are also identified and appropriate action taken. You may also be able to benefit from any new treatments available.
The information below is designed to signpost carers to some of the many excellent and easily available sources of information on diagnosis of mental and physical illness:
The NHS website and the websites of Age UK and the Alzheimer’s Society provide comprehensive information about the diagnosis of many physical health problems including:
- Cardiac services
- Chronic Fatigue Syndrome (CFS) / Myalgic Encephalomyelitis (ME)
- Continence
- Diabetes
- Dietetics
- Falls prevention
- Memory loss
- Neurological conditions
- Neurological rehabilitation
- Parkinson’s disease
- Podiatry
- Respiratory specialist services and tuberculosis (TB)
- Speech and language therapy
- Tissue viability.
Your wellbeing
Maintaining your wellbeing
When you are focusing on the person you are caring for it is important that you do not neglect your own wellbeing. Below are some tips that many people say have helped them improve their sense of wellbeing. Some of these may seem obvious, but they can often be forgotten during the course of a busy day:
- Make time for yourself.
- Learn to say ‘no’: you cannot do everything.
- Don't neglect your own health needs.
- Find time to rest and get enough sleep.
- Focus on the positive aspects of your life: what do you enjoy? What are you good at? Find an exercise you enjoy that gives you time for yourself.
- Talk to someone: a friend, family member or phone support from a carer group.
- Ask for a carer’s assessment or a review of your needs whenever you need it.
- Keep important numbers near your phone.
- Ask your GP to register you as a carer as this will make it easier when seeking support and benefits.
Dealing with difficult situations
The following tips have been adapted from Rethink and Carers UK. They are designed to inform you of ways to deal with difficult situations if they arise.
- Get to know the signs of rising tension. These could be rocking, stuttering, colouring of the face, pacing, hand-wringing.
- Let everybody win. If you can defuse a situation then you have won, and if your loved one has not lost face and has kept their pride, they have won, too.
- Walk rather than run, lower your voice, move slowly, and avoid sudden movements.
- Count to ten. As you do this, check your mood, assess the situation, decide on a first course of action, confirm it to yourself then do it.
- Once you get someone talking, let them let off steam, don’t try to stop them.
- Accept that your life has changed, at least for as long as your loved one is ill.
- If a problem develops, be prepared to stop everything, ignore a deadline or be late for something.
- Seek help in dealing with stress. Speak to family and friends, use carers’ discussion boards on websites such as Carer's UK (opens in a new tab) and speak to your GP and other health professionals.
- Discuss situations with other carers for helpful feedback and support.
- Know how to call for help in an emergency. In dangerous/violent situations, be prepared to phone the police.
Finding the right support for yourself
Below are some examples of the types of activities and therapies that may be of benefit to carers:
Recommended books for carers
The books listed below can be obtained from your local library, bookshops or from online retailers.
- Partners in Healing by William Collinge – Simple ways to offer support, comfort, and care to a loved one facing illness.
- The Selfish Pig’s Guide to Caring by Hugh Marriott – How to cope with the emotional and practical aspects of caring for someone.
- Dementia: The One-Stop Guide by June Andrews – Practical advice for families, professionals, and people living with dementia and Alzheimer’s Disease.
- Keeping Mum: Caring for Someone with Dementia by Marianne Talbot
- Skills-based Learning for Caring for a Loved One with an Eating Disorder: Janet Treasure, Grainne Smith and Anna Crane Supporting and encouraging those suffering from an eating disorder
Reading Well Books on Prescription: The Reading Well Books on Prescription scheme helps you to understand and manage your health and well-being using self-help reading. The scheme is endorsed by health professionals and supported by public libraries.
Visit the reading agency website (opens in a new tab) for more information on how to obtain these books, consult your local library or GP.
A -Z directory of useful organisations for carers
There are many sources of support and services for carers. Listed below are the contact details for the main local and national providers. All information is correct at the time of going to print, but we recommend checking the internet for the most up-to-date information.
Acknowledgements
This Carer's Handbook has been adapted with the kind permission of Cambridgeshire and Peterborough NHS Foundation Trust.
This guide is part of CUH's Carers' Policy 'Working with and Supporting a Patient's Carer(s)'. The information given in this booklet is believed to be correct at the time of print. We have taken every reasonable care in the preparation of the content, but cannot accept liability for any errors or omissions therein.
If you require this information in a different language or format, please:
- Contact the CUH Accessibility Team.
- Call 01223 256998