NHS Quality Improvement Scotland's draft framework on patient focus and public involvement

Alzheimer Scotland's response submitted 16 June 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.

Alzheimer Scotland welcomes the opportunity to comment on draft framework. Our comments relate primarily to dementia, as this is our area of expertise. In light of the NICE appraisal document on the dementia drugs, we have become aware that there is a lack of knowledge in the general public about NHS QIS and its role, in particular on its independence from NICE. Therefore, we feel that general awareness raising is required. This must be performed with the needs of people with communication difficulties accounted for, such as leaflets in plain English.

Comments on objectives

Objective 1
There is a need to involve more people in NHS QIS, as there is a risk that the people who contribute at present will be relied on and will be unable to represent the views of all patients. Therefore, recruitment must take place to ensure that a wider group is represented. With regard to the definition of ‘the public’ on pages 8 and 9, Alzheimer Scotland falls into 3 categories.

1. Patients, as we have people with dementia in our membership, and regularly consult people with dementia through groups, such as the Scottish Dementia Working Group.
2. Patient interest groups, as members of our staff can comment on the needs of people with dementia and their carers.
3. Communities of people who encounter barriers to accessing health services, as we represent people with a mental health problem, who are commonly over the age of 65. In addition, we represent the needs of carers of people with dementia.

Therefore, these groups should be identified as being under-represented in NHS QIS at present and a partnership between Alzheimer Scotland and NHS QIS should be considered to address this issue. Where people with dementia are involved, NHS QIS must at all times consider their communication needs. For example, advocates may be required to represent people with dementia, any written material must be easy to understand and any events they attend must be physically accessible, as many people with dementia have physical disabilities due to the dementia and/or their age. Moreover, any events or meetings should be designed with frequent breaks to ensure that they do not become overloaded. Accessible transport to and from such events should be provided where required.
Opportunities for involvement should be advertised in appropriate places, such as GP surgeries and day care centres and the provision of respite may be necessary when a carer wants to attend an event alone. The above needs also apply to where people with dementia and their carers receive training to facilitate PFPI.

Objective 2
Objective 2.2 will be useful in determining the inequalities in involvement that exist at present. This information should be made available to the general public. With reference to objective 2.3, again the needs of any people with dementia on the Board Working Group should be considered and met and people should not be discouraged from taking part as a result of their needs. Moreover, the exact contribution they will be expected to make in terms of time should be clearly stated before they take up such a post and flexibility must be built in to account for events, such as illness.

Objective 3
We believe that objective 3.3 is likely to be of the most interest to patients, as they will want to ensure that topics of concern to them are represented. It must be ensured that any decision taken is representative of the general patient population, and not solely of people involved in NHS QIS. It may be difficult to involve people in the Corporate and Business plans because by their nature they are technical, however perhaps re-naming the process would attract more people (for example as stated in objective 3, the “planning, design and development of NHS QIS activities”). Alternatively, consulting on the plans once formulated may be more accessible for people, such as through focus groups.

Objective 4
In developing opportunities and mechanisms for people to give NHS QIS feedback, our points made in objective 1 should be taken into account. Consideration should also be given to consulting people with dementia and their carers on the ways in which they would find it easiest to give feedback, such as a face to face meeting or over the telephone. Evidence of listening, learning and responding should be made publicly available. In addition, people who participate in NHS QIS should be made aware of any changes that have occurred as a result of their involvement.

Objective 5
It is extremely important that people from minority ethnic communities and people whose first language is not English are represented in NHS QIS, however these people may be harder to reach. Consequently, organisations such as Alzheimer Scotland should be used as a reference point to engage such people. For example, we have a Polish and Ukrainian Support Service in Edinburgh, which provides information and advice to eastern European older people, support to professionals with Eastern European cases and support to people with dementia and their carers. Such pre-formed links should be utilised by NHS QIS.

Summary
In summary, Alzheimer Scotland is supportive of the 5 objectives in the draft framework and believes that working towards these objectives will improve PFPI in NHS QIS. We hope this response is helpful and are happy to provide clarification on any of the points we have made.

Gillian Wilson
Policy & Research Officer