Response to NHS 24 patient focus public involvement consultation

Introduction

Alzheimer Scotland is the leading dementia organisation in Scotland. We campaign for the rights of people with dementia and their families and provide an extensive range of innovative and personalised support services across Scotland.

We welcome the opportunity to comment on the NHS 24 patient focus and public involvement strategy consultation; people with dementia will be users of most NHS Scotland services. Because age is the major risk factor for dementia, the likelihood of the person having multiple health problems is high and this presents a particular challenge to the NHS. There are approximately 69,500 people with dementia in Scotland; this is number is set to double in the next 25 years.

Communication and dementia

Many communication skills are lost when someone has dementia. Although individual people who have dementia will differ in how their language and communication skills are affected there are often similarities in their losses. The ability to think of the right word may be difficult for a person in the early stages of dementia, whilst putting sentences together may be affected by the middle stages of the illness.

Effective communication with a person with dementia requires an understanding of the illness. This is particularly important for NHS 24 as the telephone is the key method of communication. In order for NHS 24 call handlers to respond appropriately to callers with dementia it is important they are made aware of the illness and the communication difficulties it presents. When speaking to someone with dementia it is important to send messages the person will understand, keeping sentences short and making one point at a time will help with communication.

Response to consultation questions

Question 1-5

The strategy addresses the key issues required to enable NHS 24 to facilitate public involvement, such as communication, information and awareness raising. The strategy gives an outline of what you would like to achieve, but should provide more detail on how and when you will set about accomplishing it. An action plan for the strategy together with an outline of how the public can get involved would be helpful. It would also be beneficial to produce a user friendly Plain English version of the strategy in order to reach the wider audience you wish to engage.

Question 6

The key points in this section provide a good outline of ways in which NHS 24 can attempt to increase public involvement. We support the need to build links with specific interest and diverse groups and be proactive in involving people with different communication and health needs. Opportunities for involvement should be advertised widely in a number of community locations.

Alzheimer Scotland is Scotland’s leading dementia voluntary organisation. We are a membership organisation working nationally and locally facilitating the involvement of people with dementia and carers in getting their views and experiences heard. Supported by Alzheimer Scotland, the Scottish Dementia Working Group is run by and for people with dementia. The groups role is to campaign to improve services for people with dementia and to improve attitudes towards people with dementia.

Questions 7

This section highlights the key issues that will enable an equitable pathway for involvement. However, it should also include the needs of carers who wish to get involved e.g. the provision of respite may be necessary to allow carers to attend events. It should also include the provision of independent advocacy where appropriate to support participation.

This response is on behalf of a national voluntary organisation, we hope our response is helpful and are happy to provide clarification on any of the points we have made.