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A local authority may become aware that a child is carrying out a caring role through an assessment or informed through family members or a school. A local authority should consider how supporting the adult with needs for care and support can prevent the young carer from under taking excessive or inappropriate care and support responsibilities.

This is to ensure that all people are provided with targeted, personalised information and advice that can support them to take steps to prevent or reduce their needs, connect more effectively with their local community, and delay the onset of greater needs to maximise their independence and quality of life.

Where a person has some needs that are eligible, and also has some other needs that are not deemed to be eligible, the local authority must provide information and advice on services facilities or resources that would contribute to preventing, reducing or delaying the needs which are not eligible, and this should be aligned and be consistent with the care and support plan for the person with care needs, or support plan for the carer.

The Care and Support Preventing Needs for Care and Support Regulations continue to allow local authorities to make a charge for the provision of certain preventative services, facilities or resources. The regulations also provide that some other specified services must be provided free of charge. Some effective forms of prevention result from partnerships with other public services, voluntary and community organisations and other providers. In developing these partnerships local authorities should consider what obstacles there may be which might prevent people on low incomes from benefitting from the activities and take reasonable steps to avoid this.

In some cases, charging may be necessary in order to make a preventative service viable or keep a service running.

What are palliative care and end of life care?

This does not need to follow the method of the financial assessment used for mainstream charging purposes; and the use of such a process is likely to be disproportionate. In any event, a local authority must not charge more than it costs to provide or arrange for the service, facility or resource. This is for all adults, irrespective of whether they have eligible needs for ongoing care and support.

Although such types of support will usually be provided as a preventative measure under section 2 of the Act, they may also be provided as part of a package of care and support to meet eligible needs. In these cases, regulations also provide that intermediate care or reablement cannot be charged for in the first 6 weeks, to ensure consistency.

In some cases, for instance a period of rehabilitation for a visually impaired person a specific form of reablement 2 , may be expected to last longer than 6 weeks. Whilst the local authority does have the power to charge for this where it is provided beyond 6 weeks, local authorities should consider continuing to provide it free of charge beyond 6 weeks in view of the clear preventative benefits to the individual and, in many cases, the reduced risk of hospital admissions.

Poorly considered exit strategies can negate the positive outcomes of preventative services, facilities or resources, and ongoing low-level care and support can have significant impact on preventing, reducing and delaying need. Mr A is a 91 year old man who lives alone with his dog in his house.

Patients, family & carers / The 'D' word / Kirsty Adkins | LOROS

He is usually independent, is a passionate cook and enjoys socialising. He drives a car. Whilst out walking his dog he suffered a stroke, he fell, causing a fractured neck of femur. He was admitted to hospital and underwent surgery for a hip replacement which meant he had to follow hip precautions for 6 weeks. The stroke had left him with slight left-sided weakness and problems with concentration, sequencing and attention.

He was transferred to a community hospital for rehabilitation where the physiotherapists PTs and occupational therapists OTs worked on mobility, transfers, personal care following hip precautions, stair climbing and kitchen tasks. Cognitive screens were completed and the OTs targeted their input on helping improve concentration, sequencing and attention.

Mr A was discharged, independently mobile using a frame, independent transferring using equipment and stair climbing with supervision. To fulfil its duty under section 4 of the Act, a local authority is likely to need to go further than providing information and advice directly though direct provision will be important by working to ensure the coherence, sufficiency, availability and accessibility of information and advice relating to care and support across the local authority area.

Importantly, this duty to establish and maintain an information and advice service relates to the whole population of the local authority area, not just those with care and support needs or in some other way already known to the system. Local authorities cannot fulfil their universal information and advice duty simply by meeting eligible needs, and nor would information and advice always be an appropriate way of meeting eligible needs.

The service should also address, prevention of care and support needs, finances, health, housing, employment, what to do in cases of abuse or neglect of an adult and other areas where required. This chapter of guidance should therefore be read in conjunction with guidance throughout this document, including:. Local authorities should ensure that people are able to access all of these types of financial information and advice which help people plan and pay for their care.

In doing so local authorities should take account of the services currently in place and actions already taken and plans with partner organisations resulting from Joint Strategic Needs Assessments and Joint Health and Wellbeing Strategies. The information and advice service must cover the needs of all its population, not just those who are in receipt of local authority funded care or support. For example, people may often require information and advice before they need to access care or support services, to consider what actions they may take now to prevent or delay any need for care, or how they might plan to meet the cost of future care needs.

When a local need for additional information and advice services is identified, local authorities should recognise the relevance of independent and impartial advice and should consider carefully whether services should be provided by the local authority directly or by another agency, including independent providers. This is a very broad group, extending much further than people who have an immediate need for care or support. It will only be achieved through working in partnership with the wider public and local advice and information providers.

Information for family, friends and carers at the end of life

This may include information and advice on:. Information and advice must be open to everyone who would benefit from it. People access information and advice from a wide variety of sources. The authority should take account of information standards published by the Information Standards Board for Health and Social Care under the provisions of the Health and Social Care Act Information and advice should only be judged as clear if it is understood and able to be acted upon by the individual receiving it.

Local authorities will need to take steps to evaluate and ensure that information and advice is understood and able to be acted upon. Staff providing information and advice within a local authority and other frontline staff should be aware of accessibility issues and be appropriately trained.

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Local authorities must seek to ensure that all relevant information is available to people for them to make the best informed decision in their particular circumstances, and omission or the withholding of information would be at odds with the duty as set out in the Act. Local authorities should consider when this might most effectively be provided by an independent source rather than by the local authority itself. This is particularly likely to be the case when people need advice about how and whether to question or challenge the decisions of the local authority or other statutory body.

Depending on local circumstances, the service should also include, but not be limited to, information and advice on:. These include:.

Local authorities should particularly be aware of the needs of individuals with complex but relatively rare conditions, such as deaf-blindness. Reasonable adjustments could include the provision of information in accessible formats or with communication support. The duty in the Care Act will not be met through the use of digital channels alone, and information and advice channels are likely to include all of the following:.

Local authorities must ensure that their information and advice service has due regard to the needs of these people. These include, but are not limited to:. From the point of first contact with or referral to the authority consideration of the duty to provide for independent advocacy to support involvement in assessment, planning and reviews should be undertaken see chapter 7 on independent advocacy.

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More complex issues may require more intensive and more personalised information and advice, helping people to understand the choices available to them, while general enquiries may require a less intensive approach. For example, providing a person with too much information, more than they can take in, perhaps at a time of crisis, can be counter-productive. This can prevent them asking the right questions and can mask the articulation and identification of needs that they have, for which they could benefit from information and advice.

All contact for information and advice should take account of this and be able to respond with an assessment of needs when appropriate see chapter 6. This could include enabling access to the support of registered social work advice for those providing information and advice to people contacting the local authority. The focus should be on enabling people to access what they need through a tailored range of services that assists people to navigate all points and aspects of their journey through care and support.

People with good and impartial financial information and advice have a better understanding of how their available resources can be used more flexibly to fund a wider range of care options.

My Wishes: An End Of Life Care Story (Patient)

This section should be read in the context of the overarching chapter and all requirements set out in this chapter, for example on accessibility and proportionality, must also be applied to financial information and advice. It should provide some of this information directly to people in its community. However, where it would not be appropriate for a local authority to provide it directly, the local authority must ensure that people are helped to understand how to access independent financial advice.


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The local authority must have regard to the importance of identifying those who may benefit from financial advice or information as early as possible. This should be complemented by broader awareness raising about how care and support is funded. Local authorities may also include how care and support costs interact with retirement decisions. Actions taken by a local authority to do this should include:. This long-term outlook means that people will want to access financial information and advice at different points in their journey to enable them to make sustainable plans to pay for their care.

The local authority should provide a service that covers this breadth and that facilitates access to the full spectrum of financial information and advice — from basic budgeting tips to regulated advice — to ensure that people within its area who would benefit can access it. They should also be aware and provide for the fact that some people will be less able to protect themselves from theft, fraud and financial exploitations see chapter 14 on safeguarding. This must include the charging framework for care and support, how contributions are calculated from both assets and income and the means tested support available; top-ups see chapter 8 on charging ; and how care and support choices may affect costs.

In the case of top-ups, the local authority should ensure that someone is willing and able to pay for them — this information will be fundamental in helping with this. The local authority should use the knowledge it has of the local care market — types of care and local providers of information and advice — to complement and develop the overarching narrative on how care funding works at the national level. This would include both domiciliary and residential care. This will be of particular relevance where a person will be meeting the total cost of care and support themselves or may be considering taking out a deferred payment agreement see chapter 9 on deferred payments or purchasing a financial product.

At the lower end of the spectrum, people may just need some basic information and support to help them rebalance their finances in light of their changing circumstances. Topics may include welfare benefits, advice on good money management, help with basic budgeting and possibly on debt management. The local authority may be able to provide some of this information itself, for example on welfare benefits, but where it cannot, it should help people access it. In many situations the role of the local authority will be to understand the circumstances of the person, understand their preferences and help them to access the tailored information and advice that they need to make well-informed decisions.

Where a person lacks capacity, the authority must establish whether a person has a deputy of the Court of Protection or a person with Lasting Power of Attorney acting on their behalf. The local authority may consider the timing and context of any retirement decisions a person might be making and how this interacts with paying for their care and support.

They should advise people of the ways to pay that others in similar circumstances would usually consider and the range of information and advice they should be considering to help make their decision. The local authority should take a role in joining up information and advice organisations locally so they can work collaboratively. The local authority should help information and advice providers and people to understand the role of each information and advice provider so people can access the right provider at the right time and not be sent round in circles.

Local authorities should provide and publicise links and information on access to wider sources of information and advice, including those available nationally.