Your rights

Moving to a care home should be about enabling your autonomy. A provider must not only respect your right to your autonomy but support it. This can take many forms including:

• Being spoken to and treated with respect and involved in your care

• Supporting your choices and autonomy, including your right to make unwise decisions

• Supporting your involvement in your community

• Seeking your consent for your care and treatment

• If you are assessed as lacking capacity to make a decision, the provider must seek the consent of your representative or Attorney for Health and Welfare before changing or making care decisions, must ensure decisions are in your best interests, and are the least restrictive option

• Where you are unable to understand the consequences of your choices, you are supported to accept care that you need to keep you safe and your dignity intact

Your autonomy is protected by these laws:

• Care providers must support your autonomy, independence and involvement in the community (Regulation 9A(2) (b) and Regulation 10(2)(b) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Right to autonomy (part of the right to private life, Article 8 of the Human Rights Act 1998)

• Care providers must not make assumptions about your capacity and must seek to support you to make your own decisions wherever possible (Mental Capacity Act 2004 and the Mental Capacity Act Code of Practice)

Any restrictions on your right to autonomy must be necessary, such as to protect you from harm, and must be proportionate to that risk. The provider must carry out an assessment, in consultation with you and your representatives, before imposing any restrictions and demonstrate how any restrictions respect your rights as far as possible.

Example from anonymous helpline client:

A father enjoyed going to the pub with his son but was prevented from doing so after moving into the care home. After reminding the provider of their duties, his trips to the pub with his son were supported.

This is your care. Your wishes, likes and dislikes are central to your care planning. It is essential that you and/or your representative are involved in and agree with your care plan, and it is regularly reviewed with you. This should not just be a record about what you cannot do, but what you wish to achieve and the help you need to do this.

• Care providers must collaborate with you or your representative to plan and agree your personalised care (Regulation 9 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must collaborate with you or your representative to plan and agree how you wish to see your visitors or how you wish to make visits out of the care home (Regulation 9A(3) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must seek your consent in a way that you are able to understand. If you are unable to give consent then they must follow the Mental Capacity Act, either seeking consent from your legal representative, or carry out a best interest’s decision (Regulation 11 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Right to participate in decisions about your care (part of the right to private life, Article 8 of the Human Rights Act 1998)

This should be properly documented to ensure your care is up to date and meeting your needs and, if you wish, shared with you and/or your representative:

• Care providers must ensure that your care plan properly documented and fit for purpose (Regulation 17(2)(c) of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must collaborate with you or your representative when reviewing your care (Regulation 9 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• You are entitled to information kept about you and can request this information through a Subject Access Request under the General Data Protection Regulations.

Example from anonymous helpline client:

After speaking to the Care Rights UK helpline about concerns over her mother, Florence’s, increasing incontinence, Sarah arranged to review the care plan with the care manager. They agreed Florence should be checked by staff more regularly to avoid be left in soiled clothing, and showered if she was.

You must be treated with dignity and respect. This means being treated as a person, not an object. You must never be treated in an inhuman or degrading way – there can be no excuse or justification for causing you serious harm. The provider has a duty to act where they know (or should know) your dignity is at risk. This means care providers must protect you from serious harm, including abuse and neglect, including from other residents.

Your dignity is protected by these laws:

• Right to be free from inhuman or degrading treatment (Article 3 of the Human Rights Act 1998)

• Care providers must treat you with dignity and respect (Regulation 10(1) Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must safeguard you against abusive, harmful or neglectful care (Regulation 13, Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Your care and support plan should set out how your care needs should be supported, including relationships, to ensure your wellbeing is supported and you are protected from harm (Care Act 2014)

Example from anonymous helpline client:

A son became concerned about his father’s care after noticing he was not always getting his medication or appropriate diet, was becoming depressed and had a poor quality of life. The Care Rights UK helpline supported the son to secure a review of his father’s needs and he was moved to a more appropriate setting.

You have a right not to be discriminated against, including because of your age, disability, race, gender, religion/belief or sexuality. Fairness and equality should not be confused with treating everyone the same. It may be appropriate and necessary to treat you differently because you are in a different situation to others. For instance, you may need support to ensure that your large family are able to visit you in a safe space that is private, because you enjoy seeing them together. Or you need support to wear and keep safe disability aids, such as glasses, hearing aids, or your dentures, so you are able to see and engage in activities, communicate or eat.

Your right to be free from discrimination is protected by these laws:

• Prohibition of discrimination and indirect discrimination (Equality Act 2010)

• Right to be free from discrimination (Article 14 of the Human Rights Act 1998)

• Providers must not discriminate against residents (Regulation 10(2)(c), Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

Example from anonymous helpline client:

A resident was left unable to hear when the loss of their hearing aids went unreported and not acted upon by staff until raised by a relative. The delay undermined their ability to make care choices, socialise and their ability to continue to use hearing aids.

You should be supported to develop and maintain your relationships. Whether this is in the community, in the care home, or contact using technology such as mobiles and videos. Any restrictions must be necessary, such as to protect from infection, and must be proportionate to that risk. The provider must carry out an assessment, in consultation with you and your representatives, before imposing any restrictions and demonstrate how any restrictions respect your rights as far as possible.

If you are being placed in a care home, then ensuring that you are able maintain relationships is important, this includes ensuring that the care home location does not isolate you from those important to you.

Your right to family life is protected by these laws:

• Right to family life (Article 8, Human Rights Act 1998)

• Your right to spend time with people in a manner that you wish, both in and out of the home, should be supported (Regulation 9A(2)(a)(b)(c), Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Your relationships should be respected and your privacy maintained (Regulation 10(2)(c), Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must take proportionate and appropriate action to minimise the risk to you, for instance, in the case of an infection outbreak (Regulation 12, Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• As part of meeting your needs, your local authority has a duty to support you to maintain your family/personal relationships and must consider this when assessing your need for care (Care Act 2014)

Example from anonymous helpline client:

Mr Baker was discharged from hospital into a different care home miles from his wife, without consultation with her.

Care Rights UK supported Mr and Mrs Baker to successfully challenge the placement moving him back to his original home.

If you have capacity to make the decision about moving into care, you should have a choice of whether to move. You should be free to come and go as you please.

If you have been assessed as lacking capacity to make this decision, then the correct legal process must be followed. Moving into a care home must be in your best interests, and the least restrictive option for you. You and/or your representative must be included in the decision process.

Your liberty is protected by these laws:

• Right to liberty (Article 5 of the Human Rights Act 1998)

• Safeguards to ensure a deprivation of your liberty is lawful (called Deprivation of Liberty Safeguards, or ‘DOLS’,) under the Mental Capacity Act 2005

Example from anonymous helpline client:

Joanne was unable to leave the care home as her daughter was told that the wheelchair she relied on was for use in the care home only. After contacting the Care Rights UK helpline, her daughter requested that the home make a referral to the Wheelchair Service. As a result, Joanne received her own wheelchair.

Care providers have a legal duty to respect and protect your right to privacy and should take measures to do so. These include:

• Privacy when speaking to or seeing family and friends

• Having your room door closed, and people requesting your consent before entering

• Ensuring your personal care is carried out sensitively and in private and you are not left unnecessarily exposed

• Not sharing private information about you unless required as part of your care

• Not reading or opening your correspondence unless authorised to do so

Your privacy is protected by these laws:

• Right to private life (Article 8 of the Human Rights Act 1998)

• Care providers must ensure your privacy (Regulation 10(2)(a), Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

Any restrictions on your right to privacy must be necessary, such as to protect you from harm, and must be proportionate to that risk. The provider must carry out an assessment, in consultation with you and your representatives, before imposing any restrictions and demonstrate how any restrictions respect your rights as far as possible.

Example from anonymous helpline client:

Mrs Butler rang the Care Rights UK Helpline, after finding her visits to her mother, Mrs Oak, in hospital, were sometimes being supervised by staff. After seeking advice, she reminded staff of her mother’s right to privacy when seeing family members, and the supervision was stopped.

You have a right to be cared for in a way that is safe. This does not mean that you cannot take risks but that you should not be put at risk through poor care decisions or neglect.

The provider must be proactive as your needs change, ensuring that your care is reviewed with you and your representative and ensure you have the support of any relevant professionals. The provider has a duty to act where they know (or should know) your safety is at risk.

Your safety is protected by these laws:

• Right to life (Article 2 of the Human Rights Act 1998)

• Care providers must provide you with safe care, including assessing and mitigating risks to your health and safety, and ensuring staff are appropriately skilled and competent (Regulation 12, Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must have actively monitor and mitigate risks to safeguard your health, safety and wellbeing (Regulation 17, Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must ensure that you are not subjected to abuse, neglect or improper treatment (Regulation 13, Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

Example from anonymous helpline client:

Sidney became concerned about the care of his mother, Beth, after finding her in pain from a rash around her legs, because she had been sitting for extended time in soiled clothing. After speaking to the Care Rights UK helpline, he contacted the care home manager to arrange an urgent GP visit and review her care. Sidney agreed with the manager that they would alert the local safeguarding team.

A higher level of support was agreed, and Beth recovered from her rash.

Central to your care should be supporting your wellbeing. Care should not be a list of tasks that you need help with, but a means of supporting you to sustain a quality of life.

The provider must be proactive as your needs change, ensuring that your care is reviewed with you and your representative and ensure you have the support of any relevant professional, such as an Occupational Therapist, or Speech and Language Therapist.

Your wellbeing is protected by these laws:

• Wellbeing principle underpins the Care Act 2014

• Right to physical and psychological wellbeing (part of the right to private life, Article 8 of the Human Rights Act 1998)

• Care providers must provide you with safe care, including working with other professionals to ensure you have the support and care you need.. (Regulation 12(2)(i), Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

• Care providers must deliver person-centred care (Regulation 9 of the Health and Social Care Act 2008 (Regulated Activities) Regulations 2014)

Any restrictions on your right to wellbeing must be necessary, such as to protect you from harm, and must be proportionate to that risk. The provider must carry out an assessment, in consultation with you and your representatives, before imposing any restrictions and demonstrate how any restrictions respect your rights as far as possible.

Example from anonymous helpline client:

A resident was found by a relative to have missing teeth and others in a bad state of repair which staff had not noticed. Only then did the care provider arrange for her to see a dentist. The care home reimbursed the resident the cost of the extensive dental work in compensation for the failure to meet her needs.