SUBMISSION BY: ALZHEIMER SCOTLAND 

Alzheimer Scotland is please to submit evidence to the Health Committee. We are broadly in support of the policies; yet, some issues remain. The updated Free Personal Care section was presented as oral evidence on 7.02.06.

Free Personal Care

Alzheimer Scotland believes that people with dementia and their families should be entitled to free personal care in the same way that people with other illnesses are entitled to free medical care. 

Has free personal care improved conditions for those who receive it?

• Free personal care has improved conditions for people with dementia and their carers. Evidence suggests that it affords person-centred care, supports informal carers to continue with their caring role and improves the quality of life of people with dementia¹.
• It has removed the injustice of people with dementia having to be means tested in order to be considered for the care they require as a consequence of their illness: “free personal care has made provision for those of modest means – especially women – and people with conditions such as Alzheimer's disease more equitable”1.
• It makes joint health / local authority community care services easier to administer because the personal care element no longer needs to be means tested.

In what ways is the legislation operation effectively?

In general, the policy has been implemented without undue difficulty by most local authorities.

In what ways is it not?

It is not operating consistently across Scotland with regard to assistance with the preparation of food²

• Following the letter of 24th September 2004 clarifying the Scottish Executive position on assistance with preparation of food, the Welfare Rights Service of Alzheimer Scotland has continued to receive enquires regarding people with dementia in different local authority areas who are being charged for assistance with the preparation of food.
  • The Welfare Rights Service of Alzheimer Scotland has collated the information provided to the public by local authorities regarding free personal care on websites or leaflets. We were able to obtain information from 24 Local Authorities: 6 make it clear that assistance with the preparation of food is not personal care; 2 make it clear that it is; and 16 provide unclear information. Those that are unclear use phrases like “assistance with eating or feeding” when describing what services fall within the scope of free personal care.

Alzheimer Scotland believes that the preparation of food as well as help with eating are clearly within the scope of free personal care and those local authorities that do not understand this should be asked to change their practice immediately.

• Alzheimer Scotland’s Welfare Rights Service has dealt with two cases where people have been assessed as needing free personal care in a care home; yet, have been advised they will not be placed until money for free personal care becomes available. It has also received enquiries from people who have been advised by local authorities that an allocation of funds group will meet to decide on their application for free personal care and if agreed free personal care monies will only be paid from the date of the decision, not the date that the care has been provided from. In some cases, this can be several weeks.
• Some local authorities are increasingly concerned that the funding they have been allocated to implement the policy is insufficient: “practical problems for local authorities had included shortages of implementation funds”1. However, in the absence of a clear definition for additional free personal care and adequate comparative data, not only for free personal care but all related community care expenditure including Supporting People monies, it is difficult to assess these concerns.
• Some local authority home care budgets are apparently fully spent: “the lack of ring-fenced budgets increases local authorities’ autonomy in funding care provision. This may be advantageous in allowing responsiveness to local conditions, but may also compromise national policy priorities”1.
• Some increases in public and private sector care home fees charged to self-funders equal the net value of free personal care taking into account the loss of attendance allowance: “…higher charges in care homes have meant that individuals themselves have not benefited by the full amount allocated to cover personal care”1.

What improvements could be made?

• Clear leadership at a local and national level.
• Additional guidance should be given to local authorities by the Scottish Executive on assistance with the preparation of food.
• Better collection of data about the delivery of free personal care that puts it in the full context of community care expenditure for older people.
• Appropriate funding for the policy to be fully implemented in all local authorities and to be in line with projected increases in older people in Scotland.
• We agree with the recommendation of the Joseph Rowntree Report1 that: “a new approach to costing care packages which avoids problematic classifications of tasks and their allocation to different budgets could address many difficulties”.
• Free personal care should increase in line with inflation.
• Payments should be back dated for people who fund their own care home place, so as not to delay entry to long term care.

Should free personal care be extended and if so, to whom and why?

Ideally it should be extended to people under the age of 65. This is particularly important in light of more people being diagnosed with dementia earlier. However, this will have resource implications.

The Care Commission

Is there unnecessary duplication of care services inspection by the Care Commission and others, particularly local authorities?

Experience within our services shows that a few local authorities duplicate care services inspections. This has a significant impact on staff time.  

What is the impact of the requirement for the Care Commission to be self-financing, e.g. escalating fees?

• The impact of the Care Commission to be self funding has meant that the cost has been passed to service providers, who in turn have to pass this onto local authorities.
• As a charitable organisation there should be some scope for reduction in fees or joint inspections where a service is charged only one fee for the inspection of day care and home support. 

Is the registration system too complex and therefore having the effect of reducing the range of services and discouraging the emergence of new services?

• The registration system is complex and the registration fees are too high, which discourages the emergence of new services.
• There should be flexibility: the service categories of the Care Commission should try to fit in with those of service providers.

Is it necessary to develop the complaints system to better protect those who make complaints against service providers?

• We have not to date had any service user making a complaint about our services to the Care Commission; therefore, we cannot comment.
• It would make sense to have a more flexible policy on inspections to give priority to services causing concern and enable Care Commission staff to do proactive work around promoting good standards.

Direct Payments

Why has the take-up of direct payments been so low?

We surveyed all local authorities on the number of people with dementia receiving direct payments. Of the 11 who responded, there were 53 people with dementia receiving direct payments (25 under the age of 65; 23 over 65). This is a very small proportion (0.14%) of the 37,800 people with dementia living in the community in Scotland and around 4% of the 1438 people receiving direct payments in Scotland in 2005³.

• The nature of dementia may challenge local authorities’ interpretation of the person’s willingness and ability to manage direct payments. Authorities may also lack confidence about who is in control of the payment and how it is being used. Additionally, there may be concerns about whether the person with dementia is choosing the service, as there may be tension between what they need what their carer needs.
• Some social work departments do not adequately advertise and promote the scheme to potential users, including the welfare and financial attorneys and guardians who could manage the direct payments of people with dementia.  
• It can take a long time to arrange the direct payment. This is particularly inappropriate in a progressive illness like dementia, where the individual’s situation may change significantly over time.
• There is a lack of administrative resources at a local level to drive the scheme forward.
• Direct Payments Scotland did not provide the advice and support that was expected of them.
• We have anecdotal evidence that some local authorities have run out of money for direct payments. 

What are the difficulties that those who receive direct payments encounter in operating the system? e.g. claw back of payments

• It can take a large amount of time to set up and administer the system and due to the progressive nature of dementia, constant adjustments have to be made to the care package.
• There can be a lack of appropriate support for the person who manages the payment.
• There are demonstrable shortages in the labour force in parts of Scotland; therefore, there may be a lack of people to employ.

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