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Dementia Awareness Week Conference – 18 June 2012


Good morning. My name is James McKillop and I am a founding
member of the Scottish Dementia Working Group.


For those of you who don’t know us, and there may still be a few,
the Scottish Dementia Working Group is the independent voice of
people with dementia within Alzheimer Scotland. We lobby for
service improvement for ourselves and those coming behind us.
Every member of the Group has a diagnosis of some form of
dementia. Some of us have had a diagnosis now for over twelve
years.


This is a special year for us as we are celebrating our 10th birthday.
We are celebrating with a number of events, but the highlight will
take place next week when the Cabinet Secretary for Health,
Nicola Sturgeon, is hosting a reception for us at the Scottish
National Gallery.




With the Dementia Strategy almost two years underway, I have
been asked to talk about perspectives on dementia care. The
group felt the best way to do this was to ask members about the
impact the Strategy has had on them and their thoughts for the
future. We asked three questions and these were the responses.


The first question was - how has the Dementia Strategy changed
things for you?


Most of the responses were positive and included:
•   That there is a greater awareness about dementia – and the
      more it is spoken about – the greater the understanding.
  •   There is a more detailed awareness across the professionals –
      and a positive attitude about changing things (from a
      professional sense.
  •   Also that there is more political interest
  •   People are getting diagnosed quicker and treated better
  •   The introduction of Dementia Champions was mentioned
  •   That teams are becoming integrated
  •   And one person said that the service they received from their
      optician changed and improved when they were told about
      the Strategy


On a less positive note, it was commented that:


  •   It is a very big problem
  •   There is still too much jargon
  •   And the Strategy needs to be more clear cut
  •   However, only one person said that they had not noticed any
      changes


We then asked if members could give any examples of good
support or a good service.


I hope you can see all the good things people said. So, among the
responses were:
•   In two local authorities people highlighted the outstanding
    help, quick response following diagnosis, and regular
    frequency of visits regarding support.
•   CPNs got a mention for their positive attitudes and help with
    access to benefits. One person said - I could ring them up for
    anything
•   The introduction of the Dementia Champions was again
    mentioned
•   That Alzheimer Scotland focuses on what you can do rather
    than not do
•   Integrated services between social work and health
•   There are good support networks
•   The opportunity to stay with the team throughout the
    dementia journey
•   Someone commented that they no longer feel on their own
• Help with transitions
•   An increased awareness of ‘this is me’ so that you can
    express your wishes if you go into hospital
•   Care home staff getting SVQ qualifications
•   A good six-monthly review from their GP
• Local Community Centre
•   Befrienders
•   Increased social activities
• Good support
• Courteous services
•   And finally someone said that the dementia cafes are good
Our third and final question was - what would you like to see
highlighted for the next Dementia Strategy and what things need
to change?


  • High on the list was training and education of GPs. Although
      many of our members get a first class service from their GP,
      sadly this is not across the board
  •   Training has currently got a high profile with the production of
      ‘Promoting Excellence’. However, this is a major task and
      members feel this must have a strong profile in the next
      Strategy. And the standard of training needs to be consistent
      across all services and people working with people with a
      diagnosis. Another comment was that there is not enough
      time for staff training
  •   Also to ensure that consistent services are provided and
      consistent standards across services – not a postcode lottery
  •   That there needs to a more structured approach to sharing
      good practice across professionals
  •   That the momentum needs to be kept up for the changes
      being made


  Other comments included:


  •   More time for professionals to spend with people with a
      diagnosis eg nurses GP’s.
  •   More financial help and more money being put into dementia
      services
  •   That some people still feel they are being spoken over
•   Too much emphasis on the mini mental scale by nurses and
    GP’s which leads to anxiety
•   Good services are patchy
•   And finally, the importance of people with dementia to
    continue to be involved and have a voice – with a strong
    message – ‘we can do’


Since we asked these questions, Henry Simmons has told us
about a new initiative from Alzheimer Scotland. As Henry said
earlier, in September Alzheimer Scotland will publish a report
around support in the mid stage. This will look to address the
emotional, physical and practical support needs and will be
based on eight pillars of support. The group is very much in
support of this and we are looking forward to working with
Alzheimer Scotland on helping to develop these eight pillars of
support. Again, as Henry said earlier, it is hoped the report will
inform the next phase of the Dementia Strategy.


Members of the SDWG have been involved in the develop of the
Dementia Strategy from the beginning, and continue to be
involved in the implementation groups, we are very aware of the
enormous amount of work that is going on to achieve the aim to
provide world class services to people with dementia and their
families across Scotland. That work is clearly beginning to bear
fruit and although there is still much to do, I feel there is a
greater air of optimism around now than there has ever been.


Thank you.

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How is it for me? Perspectives on dementia care today

  • 1. Dementia Awareness Week Conference – 18 June 2012 Good morning. My name is James McKillop and I am a founding member of the Scottish Dementia Working Group. For those of you who don’t know us, and there may still be a few, the Scottish Dementia Working Group is the independent voice of people with dementia within Alzheimer Scotland. We lobby for service improvement for ourselves and those coming behind us. Every member of the Group has a diagnosis of some form of dementia. Some of us have had a diagnosis now for over twelve years. This is a special year for us as we are celebrating our 10th birthday. We are celebrating with a number of events, but the highlight will take place next week when the Cabinet Secretary for Health, Nicola Sturgeon, is hosting a reception for us at the Scottish National Gallery. With the Dementia Strategy almost two years underway, I have been asked to talk about perspectives on dementia care. The group felt the best way to do this was to ask members about the impact the Strategy has had on them and their thoughts for the future. We asked three questions and these were the responses. The first question was - how has the Dementia Strategy changed things for you? Most of the responses were positive and included:
  • 2. That there is a greater awareness about dementia – and the more it is spoken about – the greater the understanding. • There is a more detailed awareness across the professionals – and a positive attitude about changing things (from a professional sense. • Also that there is more political interest • People are getting diagnosed quicker and treated better • The introduction of Dementia Champions was mentioned • That teams are becoming integrated • And one person said that the service they received from their optician changed and improved when they were told about the Strategy On a less positive note, it was commented that: • It is a very big problem • There is still too much jargon • And the Strategy needs to be more clear cut • However, only one person said that they had not noticed any changes We then asked if members could give any examples of good support or a good service. I hope you can see all the good things people said. So, among the responses were:
  • 3. In two local authorities people highlighted the outstanding help, quick response following diagnosis, and regular frequency of visits regarding support. • CPNs got a mention for their positive attitudes and help with access to benefits. One person said - I could ring them up for anything • The introduction of the Dementia Champions was again mentioned • That Alzheimer Scotland focuses on what you can do rather than not do • Integrated services between social work and health • There are good support networks • The opportunity to stay with the team throughout the dementia journey • Someone commented that they no longer feel on their own • Help with transitions • An increased awareness of ‘this is me’ so that you can express your wishes if you go into hospital • Care home staff getting SVQ qualifications • A good six-monthly review from their GP • Local Community Centre • Befrienders • Increased social activities • Good support • Courteous services • And finally someone said that the dementia cafes are good
  • 4. Our third and final question was - what would you like to see highlighted for the next Dementia Strategy and what things need to change? • High on the list was training and education of GPs. Although many of our members get a first class service from their GP, sadly this is not across the board • Training has currently got a high profile with the production of ‘Promoting Excellence’. However, this is a major task and members feel this must have a strong profile in the next Strategy. And the standard of training needs to be consistent across all services and people working with people with a diagnosis. Another comment was that there is not enough time for staff training • Also to ensure that consistent services are provided and consistent standards across services – not a postcode lottery • That there needs to a more structured approach to sharing good practice across professionals • That the momentum needs to be kept up for the changes being made Other comments included: • More time for professionals to spend with people with a diagnosis eg nurses GP’s. • More financial help and more money being put into dementia services • That some people still feel they are being spoken over
  • 5. Too much emphasis on the mini mental scale by nurses and GP’s which leads to anxiety • Good services are patchy • And finally, the importance of people with dementia to continue to be involved and have a voice – with a strong message – ‘we can do’ Since we asked these questions, Henry Simmons has told us about a new initiative from Alzheimer Scotland. As Henry said earlier, in September Alzheimer Scotland will publish a report around support in the mid stage. This will look to address the emotional, physical and practical support needs and will be based on eight pillars of support. The group is very much in support of this and we are looking forward to working with Alzheimer Scotland on helping to develop these eight pillars of support. Again, as Henry said earlier, it is hoped the report will inform the next phase of the Dementia Strategy. Members of the SDWG have been involved in the develop of the Dementia Strategy from the beginning, and continue to be involved in the implementation groups, we are very aware of the enormous amount of work that is going on to achieve the aim to provide world class services to people with dementia and their families across Scotland. That work is clearly beginning to bear fruit and although there is still much to do, I feel there is a greater air of optimism around now than there has ever been. Thank you.