Information for carers

As a carer, you have a legal right to an assessment of your needs under the Care Act 2014.

A Carer’s Assessment is not a test of your ability to care. It recognises your crucial role, and that supporting your emotional, physical and mental wellbeing is essential.

Depending on your needs and eligibility, an assessment may result in:

• A payment for you to spend on something that makes caring easier
• Some practical help for you, for example respite care
• Information and guidance about other ways your needs might be met.

If you think this would be helpful or want to know more, staff can help you by putting you in touch with Gloucestershire Carers Hub, who will talk to you about:

• your needs and what you think will support you
• what services locally are available to help you
• how to access the services you are eligible for.

Gloucestershire Carers Hub staff can help you decide whether you would like a formal carers assessment. You do not need to have a Carers’ Assessment to be able to access much of the carer support available locally, free of charge.

This might include:

• information and guidance about support in the community
• emotional and wellbeing support for you
• courses and education about caring and looking after yourself
• contact with other carers in similar situations who know what you are going through and can share their experiences
• information about benefits and help to manage debt can also be very useful.

You don’t need to live with the person you are supporting, or be caring full time, to speak to Gloucestershire Carers Hub – you may be trying to juggle work and caring, and this is what is having a big impact on you.

You can also contact Gloucestershire Carers Hub yourself at any time. They do not require a referral from a professional to support you. Visit the Gloucestershire Carers Hub website at: www.gloucestershirecarershub.co.uk

If you have not been offered a Carer’s Assessment and you would like one, please speak to the named nurse or care coordinator of the person you care for to find out who does this with you.

Most people find talking through the assessment with a member of staff from Gloucestershire Health and Care NHS Foundation Trust or Gloucestershire Carers Hub works best to identify what will help them. The assessment is a guided conversation about you and your needs, so you should take some time to think about what is most important for you.

Our carers information booklet aims to provide some information about your involvement in the care we provide to your friend or relative but equally importantly, it aims to provide information about support for you in your caring role, from us and from other local organisations.

To request a copy of our Information for Carers booklet, email ghccomms@ghc.nhs.uk.

Planning is key to coping with a crisis, so it’s important to think in advance about an action plan. You and the person you care for might like to make a plan about what they want to happen if there is an emergency.

Often, as part of their care, teams will help your friend or relative to plan what will happen if they become unwell again. If carers are part of that plan, they should be involved and have a copy of it so they know what’s expected and who to contact.

Your friend or relative can also make a plan for themselves about what they want to happen in future, if they want and are able to. They may like to involve you in this.

The plan can be in any format. There are some Advance Care Planning tools available from staff, but it does not need to be on a special form. The important thing is that staff know about it. Service users, friends and family can talk through and record preferences about treatment, and other future support that might be necessary, and these can be stored in the clinical records so staff are aware of them if a situation arises.

Carers often recognise early signs that someone’s health is deteriorating. You should not worry that you will be seen as ‘making a fuss’ – you are the person who may be most aware of a developing problem and staff should respect your opinion.

If you are requesting help, the following list can help you prepare what to say:

• Situation: Who is calling and why? Be clear about the situation
• Background: How has this come about and what has happened?
• Assessment: What are the problems that you are worried about?
• Recommendations: What do you feel would help?
• Decision: Make a note of what was agreed and who will do what.

Staff have a legal duty to keep personal information confidential. For a variety of reasons, service users sometimes do not consent for staff to share information with carers, and if they are able to make that decision staff need to respect it.

However, it is good practice for staff to revisit this decision with service users, to ask them if it applies to all information or just some things, and to remind the service user of the positives of carer involvement.

If the person you care for has agreed that information can be shared with you, planned care or treatment should be discussed with you. If not, you can still receive general factual information both verbally and written, as well as support for yourself in your caring role.

As the carer you should be helped to understand:

• the present situation
• any confidentiality restrictions put in place by the service user
• the service user’s treatment plan and its aims
• any written care plan, crisis plan or recovery programme
• the role of the professionals involved in the service user’s care
• how to access help, including out of hours services.

As the carer you should have:

• the opportunity to speak to a professional on your own and share information that you consider relevant and important
• rights to your own confidentiality when talking to a professional
• encouragement to feel a valued member of the care team
• confidence to voice your views and any concerns you may have
• support in your caring role
• access to an assessment of your own needs and your own written support plan.

Communication and ‘consent to share’

Effective, seamless care is based on all those involved with someone having access to the right information. The person receiving support, and/or others may be put at risk if this information is not provided. Where information is shared with others, they also have a duty of care to ensure that this information is protected.

We often need to ‘share’ information about service users with a range of people. These may include family, friends, neighbours, and staff in organisations such as social services, housing, schools or voluntary and community groups.

It is important that the person’s views and wishes about what can be shared, and with whom, are recorded.

This is called ‘Consent to Share Information’ and there is a distinction to be made between general information about their wellbeing, information about the service, and sensitive, confidential information about their current mental health and progress.

The standard position regarding sharing information with families and carers is that clinicians are expected to do this unless the person withholds their consent. This is because sharing information and communicating effectively:

• helps families and carers to support the person better, and promotes their recovery and wellbeing
• creates relationships and communication channels that can improve shared understanding between teams and families, harnesses carer expertise and reduces the risk of relapse or harm for the person
• supports carers and families to maintain their own wellbeing, and reduce isolation, anxiety and exclusion.

Staff should discuss with service users how we share information with family, friends and carers, and ask them about:

• how they would like to be involved
• what the family know already
• information that can’t be shared, or concerns the service user may have about families having information.

Service users should know that clinicians will usually try to speak to involved families and carers about their own perspective of the situation, and the family’s support needs for themselves. Clinicians will agree with the service user about personal information that can be shared with carers in advance through the consent to share process.

Adult service users, and those young people deemed to be ‘Gillick competent’, have a right to confidentiality. [‘Gillick competence’ is a term used in medical law to decide whether a child (under 16 years of age) is able to consent to their own medical treatment, without the need for parental permission or knowledge. The standard is based on the 1985 decision of the House of Lords in Gillick v West Norfolk and Wisbech Area Health Authority. The case is binding in England and Wales.]

In principle, younger children also have the right to confidentiality but the parent(s) with legally-defined parental responsibility are able to make decisions on their behalf.

Information sharing with anyone not directly involved in the service user’s care, must be done in line with the principles outlined in Confidentiality: NHS code of Practice Confidentiality: NHS Code of Practice – GOV.UK (www.gov.uk)

Carers have their own right to confidentiality, and can ask for information they provide to be kept confidential from the service user. Where a carer shares confidential information about themselves, this should be stored in a separate carer record.