Family involvement
Assisting someone moving into a care home, or supporting someone living in care, can be an emotional time, especially if you have been involved in caring for them. We understand the challenges you might be facing and are here to support you.
A key thing to know is that when a person moves into a care home, the provider becomes responsible for their care. it’s also important to know that, as a relative or friend, you still have an essential part to play in providing emotional and practical support to the person moving in, as well as enabling the provider to give appropriate care.
Importantly, there are laws that protect your involvement in their care and their relationship with you.
Note that much of the information in this guide covers England. If you need support for issues in Scotland, Wales or Northern Ireland, please call our helpline.
-
Many older people benefit from some support to help them find the right care home. A family member or friend who knows them well is often the right person to help with this.
The friend or relative’s support very often continues once they have moved into the home. It can be extremely helpful for the resident to have someone they trust to advocate for them and support them to get the best from their care.
A resident can nominate a person someone to support or represent them in two ways. Either they can nominate someone when they move in, or it can have been previously arranged by setting up a Power of Attorney for Health and Welfare.
If you are their Attorney for Health and Welfare, or a court appointed deputy, then the provider must involve you – not just in care planning, but also reviews of the care, as well as any other significant decisions. This requirement is specified under the Mental Capacity Act. If the resident wants your support, then the provider must not obstruct their right to have you as their advocate. They must abide by the resident’s wishes.
In cases where the resident does not have mental capacity to nominate an advocate, nor an Attorney, then the Mental Capacity Act says that the provider must involve those who know them best when making decisions on their behalf.
To sum up, if you are their main source of support as a friend or family member, then the care provider should involve you in decisions involving:
• Care planning
• Reviewing care
• Any significant decisions about their lives.
More than one representative
Many residents will have more than one person involved in supporting them. For instance, some people will make one of their family members their Attorney for Finance and another family member their Attorney for Health and Welfare. It is not usual to nominate more than one person to be their Attorney for Health and Welfare.
Nor is it unusual to have the support of more than one person, whether they are nominated as attorneys or not. For instance, one may support them to get to hospital appointments, while another may provide more day to day support.
It is important to ensure that the care provider understands the different roles that family members have been given, so that they can involve the right people at the right time and ensure a resident’s care needs are appropriately met.
In some cases, we have heard of care providers seeking to appoint a single representative. They should not do this if it does not meet the resident’s needs. Identifying the resident’s advocates is an important part of their care planning process, which must be included.
-
As part of moving into a care home, the person’s needs and wishes should be collated and written up into an agreed care plan. The care plan should be completed before they move in or, in the case of an emergency admission, as soon as possible afterwards.
Regardless of who pays for the care, the provider must carry out a comprehensive assessment of their needs, wishes and preferences. The assessment process should include the resident, as well as those nominated by the resident. If the resident they does not have capacity to make this decision, the process should also include the people advocating in their best interests.
The assessment becomes the basis for the care plan, a document which ensures all parties understand the care available and staff know how to support them.
It is important for the resident - and, if they wish, for their nominated advocate - to see and agree to the care plan. Where a resident does not have capacity to make this decision, the care provider must involve the resident as much as possible. In addition, if you are a resident’s advocate, even if you are not their legal Attorney for Health and Welfare, it is important that you see and agree the care plan. You should be given the opportunity to check that it is correct and represents their wishes and needs, as you understand them.
The care plan forms part of the contract for the resident’s care, as it details the service that is being purchased. For this reason, if you are an Attorney for Finance for someone self-funding their care, provided they do not object, you should be able to see this care plan and any subsequent reviews or changes made to it.
From the beginning of the process, the care plan must set out clearly the details of who should be included in any care decisions, as well as when they should be involved. It should also be clear about who is involved in reviews of care and any other major care decisions. Having clarity on this information from the beginning can help to prevent misunderstandings or conflicts later on.
Part of care planning is also agreeing a review process. How often will their needs be reviewed, by whom, and how will this be done? The review may be done with the resident and you together. Or, if they do not have capacity to make this decision, the review may be done directly with you.
Lastly, the plan should include when and who the care provider should contact in the event of an emergency, or if an urgent care decision is needed.
-
Some of the resident’s needs may not be covered by the agreed fees and standard services. For example, support with going to medical appointments is often not included. Common examples of these types of appointments include hospital outpatients, emergency admissions, visits to the dentist or optician's appointments. The care provider should be clear about any potential additional charges prior to moving in.
Many relatives and friends are very happy to support their loved ones with going to these appointments, but they are not obliged to do so. It's just not possible for some people for all sorts of reasons. No one living in a care home should be denied access to medical appointments and medical care because they don't have this kind of support. It’s important to address these issues before moving in, where possible, because they can guide your decision about choosing the right home. For example, if a care home will not provide a staff member to support someone with advanced dementia to go to their appointments, then this may not be the right care home for them.
-
Talking about end of life can be difficult. But good end of life care planning can help ensure that a person gets the care and support they want and need in a timely way. Where possible, it can be really helpful to speak to your friend or relative well in advance, so that you can have a proper conversation about their wants and needs. Where this hasn’t been possible, it is important to consider the resident’s end of life wishes as part of their care planning, or review when appropriate. As with all care decisions, it can always be reviewed.
End of life planning is not just about medication and palliative care. It’s also about personal and cultural needs, including relationships. You should never be restricted from visiting a loved one who is in the last months and weeks of life, regardless of any restrictions in place due to infection outbreaks.
End of life is defined by NICE as a person who is likely to die in the next twelve months. It’s hard to make an accurate prediction, but the British Geriatrics Society recommends using the Comprehensive Geriatric Assessment to identify when someone is moving into this final stage. Signs include increased falling, increased admissions into hospital and weight loss. A person's GP is usually responsible for identifying whether they have reached this time in their life.
As soon as someone is assessed as being in their last year of life, the care home should ensure their wishes are recorded and implemented. If they express the wish for more family contact, the home must support this wish. Care providers should also support your wishes to spend more time with your loved one during this period, provide the resident does not object.
If you are worried that someone you are supporting may be in their final year of life, you may want to speak to the care home manager to see if they have been assessed by their GP. You may also want to request a review of their care to consider how their needs and wishes may change during this time, especially if an end of life plan hasn't been developed yet.
Even if someone is assessed as being in the end of life phase, this does not mean that any deterioration is something you should just accept as part of that process. It's always worth asking for any changes to be investigated, in case there are ways that they can be addressed.
Deprivation of Liberty Safeguards
The Deprivation of Liberty Safeguards (sometimes called DOLS) is statutory guidance which supplements the main Mental Capacity Act code of practice.
It sets out a legal process to protect someone who does not have the capacity to consent when they are placed into a hospital or care home. The process requires the team involved to confirm that the decision is in the person's best interests, as well as being the least restrictive measure available.
The restriction on their liberty must be authorised by law. The process includes assessments and application to the Court of Protection, which is intended to provide protection for people who can't consent. The people who know them well, and are interested in their wellbeing, should be involved in this process.
-
There are a few exceptions to DOLS. One of these is when an authorisation would conflict with an existing authority to make decisions on their behalf, such as an Attorney for Health and Welfare. This is called a ‘no refusals’ assessment.
-
The care home must apply to the local authority or placing authority, known as the ‘supervisory body’, to request a DOLS assessments to be carried out if they believe that a resident is unable to consent to their placement. This is regardless of whether a resident is paying for their care or receives support from a statutory authority.
The care home should tell you that it intends to make an application. It should also include all names and contact details of those representing or supporting the resident in the DOLS application form, including any legal roles (such as being their Attorney for Health and Welfare). This information helps determine whether an application is appropriate, who should advocate for the resident and also ensures that you are involved in the process.
-
The supervisory body must appoint a Best Interests Assessor (BIA). Their role is to establish if the resident is being deprived of their liberty. The BIA will be a qualified social worker with additional qualification in the Mental Capacity Act.
If the BIA finds that the person is deprived of their liberty, then an authorisation is required. The resident must be allocated an advocate. This is usually a family member or close friend, but can also be a paid role, sometimes known as an Independent Mental Capacity Advocate. The Best Interests Assessor should also take all reasonable steps to speak to those who know the resident well.
If you have not been contacted by the Best Interests Assessor, you may want to contact the supervisory body and request that they get in touch with you. If an application to the Court of Protection has been made without consulting key family members or friends, then you may want to consider a challenge. You could query whether the DOLS process was appropriately followed. If it has not, then the validity of the decision would be undermined.
-
The Relevant Person’s Representative (RPR) has very important role and they should be appointed as soon as possible after the Best Interests Assessor.
A RPR has the power to:
· Request a review of the DOLS authorisation.
· Make formal and informal complaints on behalf of the resident
· Make an application to the Court of Protection to seek variation or termination of the authorisation.
This RPR has legal responsibilities, including a duty to keep in contact with the resident and act in their best interests. The RPR must be over 18 with no financial interest relating to the provider. Ideally, they should also know the resident well, which means that close friends or family are often the most suitable candidates.
In some situations, legal aid is available for this role.
How the RPR is chosen
The RPR is chosen in one of three main ways:
· If the resident has the capacity to decide who they wish to be their RPR, then the Best Interests Assessor must appoint that person.
· If the resident has an Attorney for Health and Welfare, or a court appointed Deputy who is authorised to make this decision, then the Best Interests Assessor must appoint the person they choose, which can also be themselves.
· If neither apply, then the Best Interests Assessor must identify the best person to carry out this role. They must consider any preference the resident may have, or have previously indicated, as well as their ability to represent the resident’s best interests. The person identified for the role must also be able to remain in contact with the resident.
The only time a Best Interests Assessor may not appoint the resident’s/Attorney’s/deputy’s choice, is where the person does not meet the eligible criteria.
If someone does not meet the criteria, the BIA must explain the issue, and offer the opportunity to nominate someone else. Similarly, if the resident/Attorney/deputy rejects the choice of the Best Interests Assessor, they should not be appointed
As a last resort, the supervisory body should identify and appoints the RPR, which can be a paid representative, if no other options are available.
How will I know?
The supervisory body should write to you to let you know that you have been identified as the resident’s RPR. They should provide you with information regarding the role to enable you to make an informed decision.
The role should be set up as soon as possible. If you believe that the process has not been followed correctly, you should speak to the Best Interests Assessor and you may want to consider challenging the appointment on these grounds.
Support for the Relevant Person’s Representative
Where the role of RPR is taken on by a family or friend, and is not a paid role, you are entitled to support from your own Independent Mental Capacity Advocate. They can provide you with information and advice on how to carry out this role, particularly where you have concerns and wish to either seek a review or make an application to the Court of Protection.
-
DOLS are intended to provide legal safeguards and protections for a person assessed as lacking capacity to consent to their care placement. They provide a resident with a legal representative who should oversee and keep in contact with them and serve as their advocate. The resident should be able to to turn to their advocate for help and support. If a DOLS authorisation is not in place, it leaves a resident without this support and protection if they become unhappy with their care or if things go wrong.
This is why it is important to be sure that DOLS authorisation has been applied for, and are not allowed to run out, or become delayed.
Where someone should be protected by a DOLS, but is not, the supervisory body or care provider may be breaching the resident’s right to liberty (protected by Article 5 of the Human Rights Act), as well as the Mental Capacity Act.
This content last checked and updated: May 2023
Case studies about ‘Family involvement’
Need some help?
Get independent, expert advice from our helpline. It’s free*.
*Paid for by the generosity of our supporters.