Independent Review of Free Personal Care

Introduction

Alzheimer Scotland is Scotland’s leading dementia charity. We work to improve the lives of everyone affected by dementia through our policy development work nationally and locally and through facilitating the involvement of people with dementia and their carers in getting their views and experiences heard. There are currently 58,000-65,000 people with dementia in Scotland (1,350-1,650 of who are under 65). Dementia is a long-term condition which gradually and inexorably impairs every aspect of a person’s mental function, from memory and decision-making to the activities of daily living and personal care. The complex, unpredictable and progressive nature of the condition means that dementia has a profound psychological impact on both the person with dementia and on the carer. The projected rise in the numbers of people with dementia due to our aging population is one of the key health and care challenges which face Scotland.

Alzheimer Scotland warmly welcomed the introduction of legislation which gave a universal right, on the basis of assessed need, to free personal care for everyone over the age of 65 years. This policy is very much appreciated by people with dementia and their carers. We recognise that such ground-breaking legislation is not without its initial implementation problems and welcomed the Government’s response to issues raised around the definition of ‘food preparation, which are now largely resolved.

We therefore welcome the invitation to contribute further views and comments on the implementation of free personal care policy and to identify key issues for consideration by the Group. This submission is based on the experiences of carers, and staff who are working with people with dementia on a daily basis; on concerns arising from the Macphail judgement and the current review by the Government of NHS Responsibility for Continuing Care NHS MEL (1996)22. Our submission also highlights the impact that resource issues are having on the quality of care provided to this vulnerable group and their carers.

Principles for a just system for long-term care

In assessing the effectiveness of free personal care policy we suggest that it is essential to return to the underpinning principles and use them as a measure for considering how far policy intentions are being met. This will help to determine whether the legislation needs to be improved and/or clarified. The key principles are those of: equality of entitlement (regardless of income or assets); equity of access (regardless of location), choice, affordability and accountability; and that delivery must afford service users with security, privacy, dignity and as much autonomy as possible.

Lack of equity of access

This submission suggests that policy falls short on ensuring delivery on certain elements of these principles and most importantly in relation to equity of access to free personal care. People with dementia and their carers should have the same expectation of services wherever they live, however this is not proving to be the case with some local authorities interpreting their duties and responsibilities differently. We have two key areas of concern which we expand on i.e.
access to assessments; raised eligibility criteria for access to free personal care.

There appears to be some confusion over the powers local authorities have to in this area, not helped by a mismatch between policy intention (for the needs of individuals to be met in a timely fashion i.e. at the point of need and as soon as services can be arranged); and that part of the legislation and guidance which allows local authorities to respond to assessed needs only when resources are available. In 1998, Alzheimer Scotland (in response to the Royal Commission on Long Term Care), recommended the provision of national standards backed by adequate public funding. Whilst such standards are in place in relation to what constitutes personal care, they are lacking in relation to the point at which an individual’s right to free personal care (on the basis of assessed need) comes into effect. We ask the Group to reconsider this proposition in making its recommendations to Government.

Eligibility criteria and rationing

Some local authorities operate waiting lists for placements in care homes and have allocations procedures which mean that cases are reviewed on a monthly basis with priority being given where a crisis is looming. This means that families are sometimes put in the position of having to choose between the intolerable stress of continuing to provide care at home themselves, despite the assessed need for a move to a care home, and the burden of carrying all the costs themselves, until such time as the local authority decides to pay the free personal/nursing care element. In our experience, families often carry on caring well beyond the call of duty before ever approaching the local authority for help – which makes unnecessary delays in providing services unacceptable. Local policies on eligibility criteria in effect ration the provision of free personal care in contravention of the principles which support the reforms.

The issue has been brought to the fore by Lord Macphail’s opinion, Argyll and Bute v the Scottish Service Ombudsman (17 October 2007). He stated that the law only allows a local authority to start payments only when it has a contract in place with the care home. We have considerable concerns about the potential repercussions of this judgement and fear that it will be used by all local authorities to justify delays in meeting needs to the detriment of people with dementia and their carers. We have concerns that it may affect the normal practice of a number of local authorities to encourage families to find a suitable care home, make arrangements and inform the authority, so that payments can follow. It has also been normal practice for these local authorities to make back-payments in such cases. Now they are being told that by Lord Macphail that to do so is ‘unlawful.’ We strongly recommend clarification within the legislation on this key issue.

Eligibility criteria and access to free personal care at home

We continue to receive information that impacts on the care of people with dementia – in particular those who are not identified as a high risk to themselves or others. This is evidenced by some local eligibility policies on assessment and eligibility for services which we have seen.

As the threshold for eligibility for certain services rises, the eligibility ratings for people with dementia who do not present as a ‘risk’ means that they are less likely to receive services, even though their cares may be under considerable stress.

Stricter eligibility criteria could mean that people who would previously have been recorded as having unmet need slip off the ‘radar’. This could, for example, be a problem for people in the early stages of dementia who do not receive a service.

In addition, the impact of eligibility and time constraints on the support that can be offered to individual carers, as partners in the provision of care, is that staff do not have time to provide that element of the service, and express concerns about the increased stress on carers this generates.

The above factors taken together or separately may mean that carers feel that they have no choice but to seek a placement in a care home. However, in so doing, in they may find themselves between ‘a rock and a hard place’ with funding delays for care home places.

Carers inform our Welfare Rights Service that they are given little information about how an assessment for free personal care is reached and why they are charged for some services but not others. There appears to be a serious lack of accessible information for carers on eligibility criteria. In turn this makes it difficult for carers to make an informed complaint if they so wish.

Modelling free personal care costs

A key question is whether the differential costs of caring for older people with different levels and types of dependency have been adequately modelled. This is of particular concern for people with dementia. Do calculations adequately reflect:

• the frequency with which care and supervision is required by people with moderate to severe dementia living at home, and
• the additional time it takes to deliver personal care in a way that is appropriate to the needs of the individual, taking into account adherence to national care standards and the principles of person-centred care.

As our introduction explains, dementia is a complex illness often causing behavioural disturbance along with memory problems, and an inability to manage self-care. This means that, for example, a standard 30 minute service to wash, dress and provide breakfast for someone with dementia is not feasible or humane. We know that rushing someone with dementia is likely to lead to increased anxiety, agitation and aggression. Because of short term memory problems the person with dementia may need to be reminded at each visit who the care worker is and why they have come, before they can do anything to help.

Interface between personal and nursing care – payments to care homes

Whilst it has been accepted that there is little to be gained from differentiating between nursing and personal care tasks for residents in care homes, an emerging issue is the lack of clarity about when a resident may be or become entitled to the nursing care payment. The Hexagon research found that there were 9,000 self-funders in care homes in receipt of the personal care contribution an around 6,000 of these receiving both the personal and nursing care contribution. We have received some concerns from carers that their relatives are not receiving the nursing care element but feel that they should. Again, there is a lack of information and transparency on eligibility for the free nursing care payment in care homes. Because of the high level of dependency of people with dementia in care homes we would expect all such residents to be in receipt of the free nursing care payment.

We would also like to draw attention to concerns in relation to the Government’s review of the NHS MEL (1996)22 circular and interface issues between NHS funded health care and free personal and nursing care policy. At a recent consultation on the review of the circular, stakeholders were asked to consider the relevance of free personal and nursing care to NHS responsibility for continuing care; and what the distinctive element required to be distinguished between NHS continuing care and community care. We suggest that these are also important questions for consideration by the Group.

We suggest that consideration should be given to the following issues:

• Definition complex needs (paragraph 5 of the circular) – grey areas have emerged for people with dementia whose behaviour is challenging and unstable and therefore whether such residents/patients require continuing health care funded by the NHS
• Definitions of specialist palliative and end of life care – interpretation varies greatly throughout Scotland – with the consequence that in some areas the NHS has over-all responsibility and meets the costs of care, while in others it’s the local authority with input from specialist NHS medical and nursing staff.

An indication of the problem is that in that some areas patients are regularly returned from care home to hospital because the home is unable cope i.e. creating a ‘revolving door’. In many cases these patients are people with dementia whose behaviour presents a challenge to staff. In some situations, at times when no NHS continuing care beds are available, patients are returned to assessment units where they are mixed in with newly referred people who are highly disturbed. This places a great strain on staff who have to respond to the needs to two very different groups of patients within the same setting. We are concerned that the provision of funding for NHS continuing care (where ever delivered) may be further eroded with the consequent impact on the quality of care for individuals and cost to local authorities and/or private individuals.

Alzheimer Scotland hopes that the above information will make a helpful contribution to the considerations of the Group and is happy to expand on any points made.

9 November 2007
Jim Jackson
Chief Executive
Alzheimer Scotland