Response to Scottish Government consultation on equipment and adaptations draft guidance

Introduction

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We work to improve the lives of everyone affected by dementia through our campaigning work nationally and locally and through facilitating the involvement of people with dementia and carers in getting their views and experiences heard. We provide specialist services such as day care, home support and carer support (through training programmes and support groups) in over 60 locations and offer information and support through our 24 hour freephone Dementia Helpline, our website and our wide range of publications.

We welcome the opportunity to comment on the draft guidance on equipment and adaptations for health and local authority partnerships. There are approximately 63,500 people with dementia in Scotland, within this population there will be a wide range of needs for equipment and adaptations to reduce risk, enable independence and allow others to provide support.

General comments

The draft guidance does not have a clear easy to follow structure; the language used makes it difficult to understand and unsuitable for a wide readership. It also fails to provide information on key areas:

• There is no discussion on the different types of possible user groups and no definition of disability. The draft guidance is also biased towards physical disability. There is a risk that a narrow definition of disability will be adopted and the needs of people with other types of disability, such as cognitive impairment, will not be addressed. The guidance would benefit from the inclusion of person focused case studies; this would provide the opportunity to illustrate different types of disability and how solutions can be tailored to the needs of a particular individual.
• There is no outline of the different types of equipment and adaptations. There is also very limited coverage of assistive technology. Whilst we acknowledge that it is not appropriate to provide prescriptive guidance, there is a danger the format adopted will result in widely differing interpretations and implementation across Scotland. The College of Occupational Therapists has highlighted the current problems of the unnecessary restrictions on access to equipment in many areas and the inconsistencies in provision of integrated equipment services. The draft guidance fails to address this problem.

People with dementia

There are many different types of equipment and adaptations that may help people with dementia to reduce risks and enhance functionality. These included assistive technology to reduce risk or help with tasks, memory aids, safety devices, equipment for personal care and nursing equipment. Equipment that involves learning should be introduced at an early stage of the illness, as the person may find it difficult to adjust to new ways of doing things as the illness progresses.

People with dementia deserve appropriate care of a high standard from all the services they use, but that is not what they always get. It is important for people working in frontline services to have training to develop their understanding of the illness and how it can affect the person. The needs of each person with dementia will be different and should be considered on an individual basis to ensure a personalised approach. What may be useful for one person at a particular stage of the illness may be inappropriate for another.

The person with dementia may also have a co-morbid health condition which impacts on their physical or mental functioning. Where appropriate the needs of people with dementia should be considered by an occupational therapy professional with knowledge of the illness and the skills to provide a wide ranging person centred assessment.

Access to services

It can be difficult for people with dementia and carers to know how to access the care and support they require; it can also be confusing for professionals to understand how services fall between health and social care. For example occupational therapists are provided by both local authorities and health boards in most areas.

The draft guidance relies upon local partnerships working closely to agree jointly their models of provision for equipment and adaptations. However, joint working and integration of services is patchy across the country. It would be beneficial for people with dementia and carers to gain access to the support they require, including equipment and adaptations, through an integrated service route.

Community care assessment

The community care assessment section of the guidance adopts a medical model approach, where the professional assesses need; this is particularly evident in paragraph 56. However, the person with dementia and carer are best placed to understand their own needs and must be at the centre of the process. Any decisions should be made in consultation with the individual and reflect their needs and aspirations.

The paragraph on self directed support requires additional information and clarification. For example, it does not outline the requirement on local authorities to offer those it assesses as being eligible for community care services the opportunity to self direct their own support.

Costs and charging policy

Whilst the draft guidance covers funding issues for adaptations, there is no discussion of funding in relation to equipment. Reference should be made to the role of COSLA in issuing guidance to local authorities on charging for community care services to ensure charges are reasonable for each individual client.

We are concerned that families are being required to pay for equipment that is part of the person’s health care treatment, an example of this is provided in our section on care homes and NHS continuing care.

Palliative care

The draft guidance makes no mention of palliative care or reference to the Scottish Government’s Living and Dying Well action plan. Equipment is an essential part of enabling people with terminal conditions to receive care in the location of their choice. The action plan includes the following action on equipment:

Action 10: NHS boards should ensure that rapid access is available to appropriate equipment required for the care of those wishing to die at home from advanced progressive conditions. Link to the Living and dying well action plan on the Scottish Government website

Care homes and NHS continuing care

Approximately 25,400 people with dementia live in care homes and other long term care settings; the draft guidance provides minimal coverage of equipment and adaptations in care homes. The guidance should provide an outline of the care home, local authority and health boards’ roles and responsibilities in relation to equipment and adaptations.

People with dementia in the later stages of the illness are likely to have a very sedentary lifestyle; sitting or lying in specialist beds and chairs are therefore part of the health care treatment. We are aware of situations where families have been required to pay for specialist chairs in both care home and NHS continuing care settings, which were recommended following an assessment by an occupational therapist.

Adults with incapacity

Whilst the guidance makes reference to the Adults with Incapacity Act, it fails to outline how it should be used in relation to the draft guidance. Incapacity is not all or nothing; the Act recognises that whilst people might not be able to make some decisions, they should still be as fully involved as possible, in accordance with the principles of the Act.