Carers' Handbook: Introduction

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 parent carer?

Parent carers are parents of children and young persons under 25 who provide care, assistance or support to another child or young person 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 which are more than parents would usually expect to do for a similar aged child without additional needs. Some of the ways parent carers care for someone are:

• Helping them to get up, get washed or dressed, or helping with toileting when children of a similar age would be able to do this for themselves
• Doing lots of the extra household chores like washing bedding because a child is still not dry at night
• Needing to keep a child close when near to roads as they would not be safe – when children of the same of age would be able to understand the risk and keep themselves safe
• Managing behaviour which other children of a similar age would by now be able to manage for themselves.

Young adult carers

How do you know you are a young adult carer? Young adult carers are aged between 18 and 25 and have the same caring responsibilities as an adult carer and / or parent carer.

How do you know if you are a young carer?

Young carers are children and young persons under 18 who provide care, assistance or support to another family member who is disabled, physically or mentally ill, or has a substance misuse problem. Young adult carers do the same but are aged between 18 and 25. 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 brothers and sisters
• 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.

The Trust is aware of how difficult the carer role can be and values the vital work done by carers. By providing you with this handbook we hope you will feel better informed and 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

Cambridgeshire and Peterborough NHS Foundation Trust (the Trust) recognises the essential role that carers take on in supporting people with physical and mental health problems and learning 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 information, advice and support they need at the time that they need it whether that is from us or from another provider/service. With this in mind, we follow the national vision that carers will be universally recognised and valued as being fundamental to strong families and stable communities.

This handbook is designed to give you as a carer an overview of what to expect from the Trust and information about the support and resources which are available to you.

Confidentiality and information-sharing

The relationship between the professional and service user 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 service user. In some cases this could mean that the service user 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 service user.

At CPFT we believe that carers and family members should be seen as working in partnership with those who provide clinical services. They provide important information that may help doctors, nurses, social workers and therapists to have a better understanding of the needs of service users. In order to be effective, partners, carers and family members need clear information about the service user’s care and treatment, their medication, potential side effects and any circumstances that may put the service user at risk.

Confidential health-related personal information is shared between health and social care professionals, involved in a service user’s care, so that they get the safest and highest possible quality clinical care. Inaddition, staff need to include carers in the extended care and support team. A carer’s role requires them to be well informed so they can provide the essential support that service users need. Effective care and better clinical outcomes rely on this three-way partnership (Triangle of Care) between people who experience physical or mental health problems, their families and carers, and our staff. 

There may also be times when a carer shares personal information with us about themselves that they do not wish the service user 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.

If you have any questions about consent and confidentiality, please do not hesitate to speak to a CPFT member of staff who is responsible for the care and treatment of your loved. 

The Triangle of Care

We have adopted a national initiative called the ‘Triangle of Care’ which is a therapeutic alliance between service users, staff and carers that promotes safety, supports recovery and sustains wellbeing.

The concept of a triangle has been suggested by many carers and professionals who want to ensure that carers are active and equal partners within the care team. It represents partnership working between the physical or mental health professional, service user and carer. The Triangle of Care brings together many years of research with carers about what they feel will benefit them when involved with physical/mental health and learning disability services.

If the triangle is used properly and a partnership is developed, it helps to promote safety, support on-going recovery and improve the wellbeing of both the carer and the person they care for.

The key elements to achieving a triangle of care:
We are working to ensure that the six key elements or standards are completely embedded in practice. They are:

• Carers and the essential role they play are identified at first contact or as soon as possible afterwards
• Staff are ‘carer aware’ and trained in the best way to engage with you as a carer
• Policy and practice protocols regarding confidentiality and sharing information are in place
• Defined posts responsible for carers are in place
• A carer introduction to the service and staff is available, with a relevant range of information so that carers can become familiar with everything that is important to you and the person you care for
• A range of carer support services is available.

For more information on the Trust’s commitment to the Triangle of Care, visit the Carer pages on the CPFT website here: https://www.cpft.nhs.uk/carers