National Framework for NHS continuing care

Alzheimer's Society briefing paper, June 2007

The Department of Health in England has published a new National Framework of eligibility criteria for NHS Continuing Care.

This new Framework, if implemented properly at a local level, should mean that some additional people with dementia will get access to fully funded NHS care. This is welcome, but will still continue to leave thousands of families having to pay for care that is the result of a physical disease of the brain.

The Alzheimer's Society has launched a support network for people who believe that they have wrongly been denied access to NHS continuing care funding to help them challenge decisions. This network is being championed by volunteers who have won continuing care cases after lengthy battles challenging the system.

Why charging is an issue for people with dementia?

The Alzheimer's Society is campaigning for an end to the unfair system of charging for care. As part of this campaign we are calling for fair access to NHS continuing care funding for people with dementia.

The current system of charging for care is a public scandal because it discriminates against thousands of people with dementia and other forms of dementia. In the majority of cases it is individuals, and not the NHS, that have to cover the costs of care, such as help with eating, using the toilet and bathing.

We need a Government-backed debate about how we as a society pay for care. This debate needs to happen urgently. People are willing to make a contribution towards the costs of care but only if the system is more transparent and equitable and the care is of higher quality.

What is NHS continuing care?

NHS continuing care (also known as NHS continuing healthcare or fully funded NHS care) is a package of care arranged and funded solely by the NHS. It is based on whether a person's primary need is a health need. It can be provided in a range of settings, including an NHS hospital, a care home or someone's own homes.

What are we advising people to do if they think they have been wrongly charged for care?

We urge all people who think they may have been wrongly charged to seek a review of their case by asking their Primary Care Trust (or equivalent) for a continuing care assessment. If people have already been turned down for fully funded care and are not satisfied, they should request a review using the new Framework.

Where should people go if they need more support or information?

If people want to apply for NHS continuing care and need more advice they can:

• call the Alzheimer's Society dementia helpline on 0845 3000 336
• vist the campaign pages on our website.

If people are already in the system form NHS continuing care and have been turned down they can:

• ask to be put in touch with the NHS continuing care volunteer support network by calling the Alzheimer's Society dementia helpline on 0845 3000 336.  This is made up of people who have won continuing care cases.  The network can provide advice to people who are already in the process of being assessed for continuing care or are appealing decisions.

About the new National Framework for NHS continuing care

The Framework looks at issues such as the nature, complexity, intensity and unpredictability of the person's condition:

1. Nature: the type of needs, and the overall effects of those needs on the individual, including the type ('quality') of interventions required to manage them;
2. Intensity: both the extent ('quantity') and severity ('degree') of the needs, including the need for sustained care ('continuity');
3. Complexity: how the needs arise and interact to increase the skill needed to monitor and manage the care;
4. Unpredictability: the degree to which needs fluctuate, creating difficulty in managing needs, and the level of risk to the person's health if adequate and timely care is not provided.

The greater someone's needs as described by the new framework, the more likely they are to get fully funded care.

The areas of need that the Framework focuses on are as follows:

• Behaviour
• Cognition
• Communication
• Psychological/ emotional needs
• Mobility
• Nutrition - food and drink
• Continence
• Skin (including skin viability)
• Breathing
• Drug therapies and medication - symptom control
• Altered states of consciousness

The needs of the person in each of these domains will be assessed and depending on the level of need they may be awarded continuing care. It should not be assumed that because someone has many of these needs they necessarily get NHS continuing care. It is important to note that a decision not to award NHS continuing care can be challenged.

The Framework is available on the Department of Health website by visiting http://www.dh.gov.uk/en/News/DH_076315

When will it be implemented?

The Framework came into force on October 1, 2007.

Why are people with dementia frequently excluded from NHS continuing care funding?

Many people with dementia experience difficulties trying to get NHS continuing care funding because the system is confusing, complicated and unfair. The artificial distinction made between care provided by the NHS (free of charge) and social care from social services (means tested) is at the heart of the problem. The new National Framework will not resolve this bigger issue.

The NHS continuing care funding system attempts to define when someone has needs primarily for health care rather than social care. The Alzheimer's Society believes this distinction is nonsense, and in practice often means that people with dementia are not typically recognised as having a health care need. Dementia is a physical disease of the brain and it is wrong that people with dementia are unfairly charged for care that they need as a result of their medical condition.

We know of many instances of people who have won their case to get NHS continuing care funding for a person with dementia. The Alzheimer's Society encourages anyone to challenge decisions where they think they have been wrongly denied NHS continuing care funding.