NHS 24 - Draft Patient Focus & Public Involvement Strategy 2006-09

Alzheimer Scotland's response submitted 5 September 2006

Introduction
Alzheimer Scotland is the leading specialist dementia charity in Scotland and works passionately to improve the lives of everyone affected by dementia.

• We run services in over sixty sites, providing practical help such as day care and drop-in centres, home support and carer support.
• We provide an extensive website (www.alzscot.org) and our freephone 24-hour Dementia Helpline (0808 808 3000) offers information and support and receives over 5000 call a year.
• We publish leaflets, booklets, reports and a quarterly magazine keeping carers, people with dementia and professionals up to date.
• We lobby the Scottish Parliament and Westminster. Major achievements have been free personal care and the Adults with Incapacity (Scotland) Act 2000.

There are currently 64,000 people with dementia in Scotland, almost 2000 of whom are under the age of 65. The number of people with dementia is predicted to rise in line with the ageing population.
We welcome the opportunity to respond to the NHS 24’s draft ‘Patient Focus & Public Involvement Strategy’.

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 noticeably worse in the early stages of dementia. Putting sentences together is not much affected in the early and middle stages but may get worse later.
When speaking to someone with dementia it is important to send messages that he or she will understand. This can be difficult as problems with understanding are harder to spot than problems with expression. There are a number of ways to try and help with communication, such as keeping sentences short and making one point at a time.

Response to questions
A general comment on the strategy is that it is difficult to understand. It would be beneficial to produce a user friendly Plain English version of the strategy in order to reach a wider audience.

Question 1
The key objectives would seem to give direction and focus for public involvement. However, they are very wordy. It would be useful to separate out the objectives from how they are to be achieved in order to improve clarity.

Question 2
A reference group would seem an appropriate means of public involvement. It would be necessary to ensure membership from different groups of NHS service users to ensure representation. It is also important to ensure carer representation, as a key target group for NHS 24 services. It is unlikely that a person with dementia would be able to participate in a reference group due to the nature of the illness. It is therefore important to use other mechanisms to try and achieve fair representation from service user groups and to enable them to participate. For example consulting with representative groups.
The Scottish Dementia Working Group is an independent group run by people with dementia. The groups role is to campaign to improve services for people with dementia and to improve attitudes towards people with dementia.

Question 3
It may also be useful to look at the different groups of people who use NHS services generally and compare this to NHS 24 service users in order to identify groups that are under represented.

Question 4
No comment

Question 5
No comment

Question 6
No comment

Question 7
NHS 24 can attempt to ensure that the views of people with dementia and their carers influence how you provide care by ensuring their interests are represented on the Reference Group and adopting other mechanisms of consultation (see comments under question 2). In order for NHS 24 call handlers to respond appropriately to callers with dementia it is important that they are made aware of the illness and the communication difficulties it presents (see comments under communication and dementia).

Question 8
Alzheimer Scotland provides a free phone 24 hour Dementia Helpline (Tel: 0808 808 3000). NHS 24 could better engage with people who have dementia and their carers by providing details of our helpline to service users when appropriate.

5 September 2006