Family involvement

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.