Engagement and Participation - May e bulletin
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Hello,
Welcome to the May edition of the Engagement and Participation e bulletin.
Congratulations to the
People Awards winners!
Wendy Mitchell, Hilary Doxford and Barry Plumpton
won 3 of the prestigious People Awards and were all
recognised for their dedicated commitment to
involvement at the Society and beyond. The
ceremony took place at St James’ Palace in the
company of HRH Princess Alexandra, Richard
Madeley and Lawrie MacMenemy. Linda, one of our
Programme Advisors, who was at the event, tells us
all about it.
Read more about the winners
Time for dementia
programme
We think it is of the utmost importance to involve
people with a diagnosis of dementia and their carers
or family in the training of healthcare professionals.
The Time for dementia programme gives students a
chance to learn from the experts on dementia –
people living with dementia. Sophie Mackrell, the
programme’s network manager, talks to us about
the achievements of the programme so far and its
plans for the future.
Read more from Sophie
Shelagh's story
Shelagh Robinson talks to us about her experience
of supporting the Society’s ‘Campaign for change’
which resulted in her delivering more than 50,000
signatures to 10 Downing Street. Shelagh says, ‘for
me the best part of the campaign was being given
the opportunity to speak up for those people who
like myself, had experienced appalling post
diagnosis support’.
Read more from Shelagh
The FIT (Facing it together)
group
The face it together group is run by and for, people
living with dementia in West Yorkshire and it
specialises in consultation work in their local area.
Their latest project involved four new swimming
pools and sports centre development projects to
ensure that the designs and staff are dementia
friendly. Group members are also passionate about
speaking at events to actively challenge, shape and
change their community.
Read more about the FIT group
Karen's story
The first Welsh staff Welcome Day was in October
and Karen Kitch explains why she was excited to be
involved. ‘It doesn't matter how far you are on your
journey, you can still contribute your views and
experiences. Being part of something is a form of
support too. Opportunities like this have helped me
to live well with dementia and to achieve something
positive’.
Read more from Karen
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Read more about the People Awards winners!
We celebrate 3 winners nominated for their involvement work
Congratulations to Wendy Mitchell, Hilary Doxford and Barry Plumpton, 3 of the winners of the
People Awards 2016. Wendy, Hilary and Barry were all recognised for their dedicated commitment
to involvement at the Society and beyond. The truly well-deserved awards ceremony took place at
St James’ Palace in the company of HRH Princess Alexandra, Richard Madeley and Lawrie
MacMenemy, to name a few. Linda, one of our Programme Advisors, who was at the event, has
written about the day.
The award winners – by Linda Willis
I was invited to St James’s Palace in London for ‘The People Awards 2016’ by the Alzheimer’s
Society for my contribution towards the Society over the year.
What an experience, the Palace was magnificent the Palace is still central to the life and work of
members of the royal family and household and the Alzheimer’s Society’s Royal Patron HRH
Princess Alexandra still lives there.
Jeremy Hughes CBE Chief Executive for the Alzheimer’s Society was there, Richard Madeley
announced the winners and HRH Princess Alexandra the Hon Lady Ogilvy presented the awards.
The winners
Wendy won the award for Realising Potential for her role as a Research Network Volunteer. Beyond
assisting the direction of our research programme, she has had an incredible impact on the reputation of
Alzheimer’s Society and our campaigns. She does this by sharing her experiences honestly, often with
humour, and promoting our research, events and campaigns. Since receiving a diagnosis of dementia
Wendy has used social media through a blog and twitter to raise awareness around the world. By sharing
her experiences she has supported countless others to realise their potential.
Barry won the Pushing Boundaries award for his role as a Research Network Area Coordinator. Matt
Murray, the Engagement and Participation Manager, says that it is Barry’s ‘positive attitude to change that
has opened up new opportunities for volunteers and helped a wider range of people to access training and
support, strengthening our network as a whole'.
Hilary won the award for Outstanding Contribution for her role as a Research Network Volunteer.
Always acting with integrity, Hilary has worked with others to create platforms that build the voice
and influence of people affected by dementia nationally and internationally. She raises awareness
of dementia when she chairs and presents at conferences, summits and campaigning events
around the world. In June 2015, Hilary became an official Ambassador for Alzheimer’s Society.
Through this role and by challenging stigma and contributing to research, policy and the
development of services, she has inspired people affected by dementia to get involved in our
work.
The panel for this award was the Mid Sussex dementia friendly group, which is a user involvement
group which is also part of the Service User Review Panel (SURP) network, who also attended the
awards. The group commented that 'We found it very hard to choose a winner from such a
wonderful group of candidates. However, Hilary just stood out a little bit more than the others with
all the brilliant things she was doing for people with dementia'.
Congratulations to all the winners the Volunteers and Employees but also the runners up who also
received awards – very well deserved.
After the awards we had afternoon tea and HRH Princess Alexandra came and spoke to me and
asked me why I was there, we then made our way home.
I would like to take this opportunity to give the Alzheimer’s Society a big thank you from my
husband and myself, we had a wonderful day and are left with lots of happy memories.
Written by Linda Willis, a Younger Person Living with Dementia
Read more from Sophie
Time for dementia programme
Sophie Mackrell, the programme’s network manager, talks to us about the achievements of
the programme so far and its plans for the future.
What is Time for dementia?
Time for Dementia is a ground-breaking educational initiative to develop, deliver and evaluate an
innovative approach to learning about dementia for undergraduate health professionals.
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The programme runs over two years
It provides on-going, regular contact with a person with dementia and their carer
It aims to provide students with a unique opportunity to understand what it is like to live with
dementia
It also enhances skills and offers an understanding of the emerging challenges of an aging
population and long term conditions
It is funded by Health Education Kent, Sussex and Surrey, Time for Dementia has been
included in the 2014/15 and the 2015/16 curricula for first year nursing and paramedic
students at University of Surrey and for second year medical students at Brighton and
Sussex Medical School (BSMS). In total four cohorts of undergraduate students will
undertake the programme.
Why is it important?
Alzheimer’s Society thinks it is of the utmost importance to involve people with a diagnosis of
dementia and their carers or family in the training of these trainee healthcare professionals. This
programme gives the students a chance to learn from the experts on dementia – the people
directly affected by the condition.
It’s a good way for them to gain knowledge first-hand of what it’s like living with dementia and the
challenges they have to overcome. There are more than 43,700 people living with dementia in
Surrey and Sussex and it’s crucial that more people in the field of healthcare are aware of the
condition.
Since the programme started a year ago, a total of 800 people have signed up to take part across
Surrey and Sussex – 150 in Sussex and 250 families in Surrey. That’s a total of 400 people with a
diagnosis of dementia and 400 carers across the two counties.
The numbers of people needed for this project initially seemed challenging. But we’ve been
closely with Alzheimer’s Society staff and Health Trusts to help publicise the project, people have
been extremely keen to take part and to share their experiences.
What are the benefits?
People affected by dementia have described a range of benefits they have experienced through
getting involved. They include developing confidence and new skills, opportunities for learning
more about dementia and sharing that knowledge, feeling valued as well as feeling satisfaction
from making a difference.
One family said:
'It’s not just about the medical side of getting a diagnosis; it’s about helping students to understand
the bigger picture and the wider implications for me and my wife. It is also really important that
they understand that I am still a person not just a diagnosis, that really matters.'
Students have reported that meeting with people with a diagnosis of dementia as well as carers
has challenged their previous views and preconceptions. In addition they feel that they are
learning more about their role as health professionals in supporting families where there is a
diagnosis.
One student said:
'Meeting real people and hearing their stories had really helped me to understand the reality of
dementia over and above the textbook medical definitions.'
Plans for the future
The ongoing challenge is to ensure everyone is supported throughout their participation in Time
for Dementia and that those who want to, can become involved in user involvement activities for
Alzheimer’s Society and beyond.
To find out more email [email protected] or call 07713 779982
Read more from Shelagh
Shelagh's story
Why I am involved in campaigning by Shelagh Robinson
‘For me the best part of the campaign was being given the opportunity to speak up for those
people who like myself, had experienced appalling post diagnosis support’
How did you become involved and what was your role?
As a result of something I wrote on line on one of Alzheimer’s Society Facebook posts I was asked
to spearhead the campaign for better support for people with dementia after diagnosis. The
campaign took the form of a petition asking MP’s to pledge support for this in their election
campaigns. Signatures were mainly collected online although some were collected manually. We
achieved more than 50,000 signatures which I delivered to 10 Downing Street.
In March the Society organised a lobby at the Houses of Parliament inviting all MP's to come and
learn more about Dementia and to support the petition. I was asked to attend and my husband and
two teenage grandsons who are all Dementia Friends also attended and we were able to talk to
the more than 200 MP’s who attended the lobby.
There was a tremendous variety of responses. Some MP’s were knowledgeable and committed to
Dementia support, predictably many of these had experience of Dementia within their own families
but some were just completely supportive and clued up about what was happening in their own
areas. Sadly it appeared that some had mainly come to have a picture taken with Angela Ripon for
their election publicity and were not very interested in deeper exploration.
What it was like to be involved?
For me the best part of the campaign was being given the opportunity to speak up for those
people who like myself, had experienced appalling post diagnosis support and to say ‘this is not
good enough.’ Talking to members of parliament, some were very clear that what would like to see
would be the same kind of support given to patients diagnosed with dementia as is given after
cancer diagnosis. It was also good to be part of a campaign to raise awareness and to see how
positive the response was to our campaign was. There is still sadly a degree of stigma and sense
of hopelessness around dementia that we need to work hard to combat and campaigns like this do
achieve this to some extent.
The worst part of the campaign was the realisation, not for the first time that so much is down to
money and we are fighting for a bigger slice of a small cake and some MP's were realistic and also
negative about this.
How were you supported?
Throughout the whole campaign I was fully supported by the Society. The day of the lobby was a
difficult day for me as my mother had died on the previous evening; she was 94 and had vascular
dementia. I knew that the best thing I could do to honour her memory was to stay in London. The
sensitivity and kindness of the Society’s staff that were at the Houses of Parliament was beyond
words. It confirmed for me that Alzheimer’s Society lives up to its ideals and that staff treat
supporters who have dementia with the respect, care and concern that they are fighting for, as a
norm.
It is hard to determine what we achieved beyond a lot of consciousness raising but we can only
hope that when parliament has to vote on legislation around dementia care they will do so from a
more informed basis. As well as the lobby of members of parliament it was clear from feedback
that this was an area concern that many people who signed the petition had not previously been
aware of and hopefully their concern will result in individual local movements for change.
Read more on the FIT (Facing it together) group
The Facing it together (FIT) group
Cathy Henwood, one of the group’s coordinators, talks about the work and the laughter,
that makes this such a successful involvement group
The Facing it together group is run by and for, people living with dementia in the Bradford area. It
was set up as a peer lead group with an outward looking focus, therefore group members take
part in a huge range of activities to challenge, shape and change viewpoints and services in their
local area.
Some of the group members speak at events to challenge the myths and assumptions around
people living with dementia. Other members interview new Alzheimer’s Society staff so have a
direct impact on the people who run services. Their latest group project involved liaising with the
Council on four new swimming pools and sports centre development projects in the Bradford
district, to ensure that the designs and staff are dementia friendly. The group is passionately
involved with projects such as this to discuss and interact with dementia friendly community plans
and work on a local and national level.
I asked the members themselves to describe the group and here is a selection of their
responses:
‘Coffee and biscuits’ (followed by a lot of laughter)
‘It makes you feel better going here because it is nice to be with people like myself – we are all
learning from each other and openly talking about dementia to people who understand and don’t
question it. It really feels like we can contribute’.
‘It’s good to talk’
‘We talk about interesting topics makes me think’
‘It’s good to get our views heard’
‘We are all in the same boat’
‘I can relate to what people say, so many similarly as well as differences’
‘It’s good fun – I always go away feeling better’
‘We all have a good laugh but laughing with each other not at each other’
This group is so important for contributing to dementia friendly work in the district, yet it also brings
personal advantages to its members, including a sense of purpose from the achievements of their
influencing activities.
People in the group say it is the only place they feel able to really speak about their condition
because they are all in the same boat. The group is very supportive of each other and no one feels
embarrassed if they get in a muddle, repeat things or can’t find the words to express themselves.
By Cathy Henwood, Dementia Friendly Communities Coordinator
Read more from Karen
Karen's story
Why I am involved with the Welsh staff Welcome Days by Karen Kitch
'It doesn't matter how far you are on your journey, you can still contribute your views and
experiences.'
How did it feel to be asked to do the Welcome Day in Wales?
It felt great to be asked. By enabling staff to understand my journey, I'm able to help others who
may be in the same situation.
What was the experience like?
It was a lovely day and being able to share my experience was good. I'm involved in a theatre
company that uses drama to showcase our journey as people living with dementia. For me, people
learn best when they hear directly from the person living the experience. Being there in person
also has delivers more impact.
How did you feel leaving the Welcome Day?
It benefits me attending events like today and I'm glad that people living with dementia are
encouraged and given the option to be involved in events like the Welcome Day. It doesn't matter
how far you are on your journey, you can still contribute your views and experiences. Being part of
something is a form of support too. Opportunities like this have helped me to live well with
dementia and to achieve something positive.