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Future Matters Empowering communities to talk
about and plan for the end of life
Year 5 Report
2017/2018
www.gentledusk.org.uk
twitter @gentledusk
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Table of Contents
EXECUTIVE SUMMARY…………………………………………………………………………….3
WHAT WE DO ……………………………………………………………………………………….5
OUR TARGETS ……………………………………………………………………………………...6
OUR IMPACT ………………………………………………………………………………………..7
COMMUNITY AWARENESS RAISING EVENTS ……………………………………….7
ADVICE AND PLANNING SERVICE………………………………………………………9
ADDITIONAL OUTCOMES – MEDIA and PUBLICITY ………………………………..13
KEY ACHIEVEMENTS AND KEY CHALLENGES …………………………………………….15
KEY RECOMMENDATIONS FOR 2018-2019 ………………………………………………….15
For further information about Future Matters contact:
Debbie Young Mireille Hayden
Email: [email protected] Email:[email protected]
Phone: 07961 915656 Phone: 07801 54371
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Executive Summary
Future Matters is a community-based solution to raising awareness of death, dying and
bereavement. It facilitates open conversations and encourages end of life care planning.
Volunteers are trained to cascade end of life planning information to local communities. They
also support members of the public to put their end of life care plans in place and help them
share their plans with those close to them and those who may have to make decisions on
their behalf.
Future Matters Islington has been commissioned by Islington CCG since 2013. In it’s 5th
year, the service continues to exceed its’ targets and deliver a range of community activities
and one to one support.
In Year 5 (2017/2018) 463 members of the public were reached through 20
awareness raising events (exceeding the target by 32%). Future Matters volunteers
delivered 117 one-to-one appointments (exceeding the target by 17%) and 52 end of
life care plans were put in place (including 20 advance care plans).
Summary of the Year
We continue to deliver a thriving community service, raising awareness of death, dying and
end of life care planning within varied settings and to a diverse audience. From Dying
Matters Week events in accessible local settings such as shopping centres and theatre
venues to workshops in supported housing schemes and regular Death Cafes; our events
are very successful and the feedback is overwhelmingly positive.
Our communication strategy and service publicity have also significantly contributed to
raising awareness in the community through the use of newsletters and a significant amount
of activity on social media. Our social media campaign during our Dying Matters festival
alone reached 312,763 twitter users.
We continue to see that our community events have a positive impact on the audience as
they generate 22% of the referrals to our Advice and Planning Service (which supports
people to put their end of life care plans in place). In addition, 24% of these referrals are now
self-referrals which is an increase from the previous years and shows an increased in
awareness of the service within the local community. Referrals from the Dementia
Navigators have also increased this year by 400% with 26% of all referrals coming from this
service. This demonstrates the positive impact our Gentle Dusk workforce training has had
on the staff working within this service. However, these referrals account for the majority of
the increase in the complexity in our caseload.
Demographic data from our service users also demonstrates that the gender, ethnicity and
age range of our service users continues to be diverse. This year we have seen a significant
increase in the complexity in our caseload with a subsequent increase in the number of
home visits we have made.
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What we do
Future Matters is a community-based solution to raising awareness of death, dying and end
of life care planning amongst the public. It engages local people, enabling them to discuss,
actively plan and prepare for death and the care they wish to receive. Future Matters
increases the number of end of life care plans (including advance care plans) completed
within the borough.
The aims of Future Matters are to:
Raise awareness of the importance of open conversations around death, dying and
bereavement;
Raise awareness of the importance of planning for the last years of life;
Empower and support people to develop their own end of life care plans including
advance care plans, lasting powers of attorney, wills, funeral wishes/plans and organ
donation; and
Enable people to voice their choices to those close to them and those who may have
to make decisions on their behalf about their future health and social care.
Future Matters has been commissioned by Islington CCG since 2013. Over the past 6 years
the project has been developed and adapted to ensure it meets local need and the
requirements of the commissioners. It is delivered as a partnership between Gentle Dusk
and Age UK Islington and is a volunteer-led project.
In practice, Future Matters offers two key services:
1. Community awareness raising activities. Through workshops, information stalls,
talks, events and Death Cafes our trained volunteers cascade information to local
communities about all aspects of end of life care planning (including advance care
planning). These activities are offered to a wide range of organisations in the
voluntary and health and social care settings such as community groups, supported
housing schemes and patient groups.
"Really great space for people to share stories, experiences, resources
and celebrate difficulties”
Death Café participant
2. Advice and Planning Service. Appointments with a trained volunteer are available
for those residents who wish to actively plan and record their wishes for their end of
life. This can include completing an advance care plan; making lasting powers of
attorney and/or will; recording funeral wishes/plans and considering
organ/tissue/body donation. Service users who complete an advance care plan are
empowered and supported to share their plan and wishes with their GP, other health
& social care professionals and anyone else who is important to them.
"So relieved. I was so worried before. I never dreamed it would be like this. I’ve not got
words to say how happy I am about it. I feel complete now”
Service User
Our Targets
This report outlines Future Matters services’ key successes and learnings from Year 5
(2017/18) and sets out recommendations for taking the project forwards into Year 6
(2018/19). It also summarises the activity against the planned targets and highlights
additional outcomes achieved during Year 5.
Targets for Year 5 (2017/18):
200 members of the community reached by activities by end of Sept 2017 and 350 by
the end of March 2018
100 individual appointments held by the end of March 2018
50 advance care plans, wills, powers of attorney and records of funeral wishes
developed by end of March 2018
The Scope of the Future Matters service
A more empowered community
More open end of life discussions
More advance care plans, wills, power of attorneys and funeral plans in place
More people cared for and dying in their preferred place
Less inappropriate hospital admissions and reduced hospital costs
Reduced barriers to end of life conversations with health professionals
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Our Impact
The project has been very successful during 2017/18 in reaching out to the community
through a diverse range of activities and supporting individuals to put their end of life care
plans in place.
Year 5 Outcomes:
A total of 20 Community engagement events were delivered: 9 workshops, 6 death cafes, 3
information stalls, 1 theatre event and 1 discussion group.
These community events reached 463 members of the public, 26 of which requested a follow
up appointment/information.
117 one-to-one appointments were delivered in the Advice and Planning service to 91
different service users.
As a result of the one-to-one appointments with a volunteer 52 plans were put in place:
o 20 people completed an Advance Care Plan
o 2 people completed Key Wishes letter to GP
o 12 people recorded their funeral wishes
o 6 people made a Will
o 11 people made a Lasting Power of Attorney
o 1 person registered for organ donation
12 of the 22 completed ACPs and key wishes letters have been sent to the service users
GP. 7 of the completed plans were given to the GP by the service user themselves. 2 people
wished their GP to be informed a plan had been completed but for the plan not to be sent. 1
person did not want to share their ACP with their GP.
Social media was used extensively during our Dying Matters Festival particularly twitter with a
total reach of 312,763
Community Awareness Raising Events
Four hundred and sixty-three members of the public were reached through our community
awareness raising activities. These activities included workshops, Death Cafes, information
stalls at a variety of events and discussion groups (see Table 1 below for further details).
Table 1. Community events delivered by Future Matters, April 17 to March 18
Event Name Type of activity Date of activity No. attended
Follow ups
1 Cutbush House (Centra) Workshop 24th April 17 9 1
2 Dying for a Cuppa Information Stall 11th May, 2017 178
3 Death Café Death Café 26th May, 2017 14 0
4 Young People's Death Café Death Café 1st June, 2017 6 0
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5 Outside the Box, Theatre Production
Theatre event 4th June, 2017 57 0
6 Carers Event Information Stall 12th June, 2017 15 2
7 Washington Court (Centra) Workshop 28th June, 2017 11 3
8 Derek Jacobi event at Almeida Theatre
Discussion Group 30th June, 2017 14 0
9 The Mildmays Workshop 6th July, 2017 12 4
10 The Mildmays Workshop 20th July, 2017 7 ?
11 Death Café Death Café 20th July, 2017 19 0
12 Hawberry Lodge (Centra) Workshop 12th Oct, 2017 8 5
13 Duval House (Centra) Workshop 17th Oct 2017 6 2
14 Claremont Workshop 9th Nov 2017 6 3
15 Death Café Death Café 23rd Nov, 2017 21 0
16 Carers Rights Day Information Stall 24th Nov 2017 20 2
17 Death Café Death Café 25th Jan 2018 21 0
18 Stroke Association Workshop 22nd Feb 2018 10 0
19 ACP workshop Workshop 8th March 2018 13 4
20 Death Café Death Café 22nd March 2018 16 0
463 26
Activities delivered as part of Dying Matters Festival 2017
The volunteers used a variety of interactive activities and tools to support the delivery of their
events including music, poems, quizzes, games and leaflets.
As part of the community awareness raising activities we inform people about the Future
Matters Advice and Planning Service and provide them with an information flier to take
away. If they are interested in an appointment to see a Future Matters volunteer for a one-to
one appointment for further individualised information and/or to put some plans in place,
their contact details are taken by the volunteer and they are then contacted by Age UK
Islington and given an appointment.
The Death Cafes, which are now run quarterly, have proved to be very popular. Local
residents welcome the opportunity to have a safe and supportive space to talk opening and
honestly about death from whatever perspective they wish.
"I think it's a fabulous idea. It worked really well, enabling people to talk about what
they needed to talk about"
Death Café participant
"I'm always just intrigued and thankful about hearing other people’s experiences. It's
great for learning from each other"
Death Café participant
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I’m so grateful for this. It’s a weight
off my mind
Before you came, death was frightening, now
not so much
It’s been enjoyable being able to talk
about it. I know it’s a serious thing but it’s been a laugh
Advice and Planning Service
Appointments, with a trained volunteer, are available for those residents
who wish to actively plan and record their wishes for their end of
life. This could include completing an advance care plan, making
a Lasting Power of Attorney or Will, recording funeral
wishes/plans and considering organ/tissue/body donation.
Through the Advice and Planning Service 117 appointments were held in 2017/18
exceeding our 100 appointment target by 17%. A total of 91 individual service users were
supported by the service.
Appointment Location
We have had a huge increase in demand for home appointments with 50% of appointments
taking place in the client’s own home (including 7% in supported
housing). The demand for home appointments has been
increasing year-on-year with 24% in 2015/16 and 38% of the
appointments taking place in the client’s home in 2016/17. The
other half of all appointments (50%) in 2017/18 took place at
the Age UK Islington Contact Centre.
This increase in home appointments highlights the nature of the cases that Future Matters is
now dealing with, with service users having much more complex needs (i.e. physical, mental
and social). This has had implications for the Service as we need to ensure that the
volunteers are adequately trained and supported and that the service user’s home has been
risk assessed. It also has further implications for co-ordination of appointments, time and
travel.
Profile of our service users
The age profile of our service users is varied (see Figure 1). The majority of people we see
are over the age of 70 (55%), but we also see a good proportion of 65-70 year olds (20%)
and 51-65 years olds (17%) and a small number of 36-50 year olds (8%).
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We have also seen a balanced number of males and females accessing the service with
44% of the service users being male and 56% female.
Future Matters aims to offer an accessible and appropriate service to all those living in the
borough of Islington. Our monitoring data in Table 2 below shows the ethnic breakdown of
our service users accessing an appointment compared to the demographics of the Islington
population from the last census data.
Table 2. Ethnicity of Service users
% of Service Users Census data, 2011
Asian 8% 9%
Black/African/Caribbean/Black British 18% 13%
Mixed Ethnic Group 0% 6%
White British 49% 48%
White Irish 9% n/k
White Other 14% 20%
Undisclosed 2%
Referral routes
Referrals to our Advice and Planning service came from a variety of sources (see Table 3
below). The highest percentage of referrals (26%) came from the Dementia Navigators. This
is a significant increase since last year (from 4 referrals last year to 24 this year). This
highlights the positive impact that the Gentle Dusk training has had on these members of
staff. Almost a quarter of the referrals were self-referrals which shows how much people in
the local community are now aware of the service. Internal referrals from Age UK Islington
were also almost a quarter of all our referrals and a further quarter of the referrals came via
our Future Matters community awareness raising activities.
Interestingly, there were no referrals from GPs even though many GPs are now being sent
completed Advance Care Plans from our service users. In addition, there was only 1 referral
from London Borough of Islington Social Care team.
Figure 1: Age of Service Users
18-35 36-50 51-65 66-70 71+
0%
10%
20%
30%
40%
50%
60%
Response Percent
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Table 3. How our service users were referred to FM for an appointment
% of referrals Number
Dementia Navigator 26% 24
Self-referral 24% 22
Age UK (carers hub, navigators, Information and advice, activity partners..)
24% 22
Future Matters event/group 22% 20
Other (icope & CAB) 2% 2
London Borough of Islington - Social Care 1% 1
By their GP Practice 0% 0
By another health professional 0% 0
Information & Advice given during the appointments
Although a service user may request an appointment with Future Matters to specifically
discuss a particular aspect of end of life care planning i.e. funeral planning or making a
lasting power of attorney, the Future Matters volunteers will always aim to discuss with them
all aspects of end of life care planning during the appointment/s as many people are
unaware of advance care planning and why they need to do this.
Figure 2 below shows how often each aspect of end of life care planning was discussed in
the appointments. Advance care planning was discussed in the majority (71%) of the
appointments. Lasting Powers of Attorney were discussed in 54% of the appointments, Wills
in 54% and funeral wishes/plans in 40%.
Figure 2: Topics discussed during Future Matters appointments
End of Life Care Plans completed
Fifty-two end of life care plans were put in place as a result of a Future Matters appointment
and direct support from a volunteer (see Table 4).
0%10%20%30%40%50%60%70%80%
Response Percent
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Table 4. Plans completed by service users as a result of Future Matters support
End of Life Care Plan Number of plans
Completed an Advance Care Plan 20
Key Wishes letter to GP 2
Written a Will 6
Made a Lasting Power of Attorney 11
Recorded funeral wishes 12
Registered as an organ donor 1
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It is important to note that many service users who have been reached by the project, either
through a community event or an appointment, may have completed a plan without the
support of a volunteer. For example, advance care planning forms are given out at
workshops and during most appointments and many service users are happy to complete
these by themselves. We are not always able to capture these additional outcomes.
It can take anything between 1-5 appointments for a volunteer to support a service user to
complete an advance care plan: the majority of our service users require 3 appointments.
However, during 2017/18, due to the increase in complexity of the service users being
referred for an appointment many did not complete their Advance Care Plans. Often,
appointments got cancelled due to ill/poor health or other more pressing issues took over
and the ACP process was not completed. To mitigate this and to provide a helpful summary
to GPs, we have developed a Key Wishes letter that summarises 3 key points that the
service user would like their GP to know about their end of life care wishes.
Sharing completed Advance Care Plans with GPs
Those service users who complete an advance care plan (ACP) are empowered and
supported to share their plans and wishes with their GP, other health & social care
professionals and anyone else who is important to them.
With the service users consent, Future Matters either sends the completed ACP or key
wishes letter to the GP on the service users behalf or writes to their GP to inform them that
the service user has completed an ACP and that the service user will share it with them
themselves. There are a number of service users who wish to take their ACP to the GP
themselves and do not wish us to write to their GP and there are a small number of service
users who do not wish to share their ACP with their GP at all.
Table 5 below indicates how the completed ACPs have been shared with GPs. Over half of
service users are happy for Future Matters to share the completed ACP or Key Wishes letter
with the appropriate GP and 32% wish to share it themselves.
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Table 5. Consent given to share ACPs or Key Wishes with GP
Type of consent given Number (%) of service users
To send a copy of their ACP to their GP 12 (54.5%)
To write to their GP to inform them that they have completed an ACP
2 (9%)
They did not give their consent for either of the above 1 (4.5%)
They will take their ACP to the GP themselves 7 (32%)
22 (100%)
Table 6 below lists the GP practices of the service users who have completed an ACP or
Key Wishes letter.
Table 6. GP Practices of the service users who have completed an ACP or Key Wishes letter
Islington GP Practice Number
Bingfield Street Surgery - Dr Flinders 1
City Road Medical Centre 1
The Goodinge Group Practice 5
Islington Central Medical Centre 2
Mildmay Medical Centre 2
Mitchison Road Surgery 1
The Miller Practice 1
River Place Group Practice 1
Stroud Green Medical Centre 3
The Village Practice 1
Other 4
Total 22
Additional Outcomes - Media & Publicity
Another significant element of the Future Matters service is ensuring that information about
the service is available via a range of media and fora to ensure that it is advertised as widely
as possible. This work also serves as further awareness raising about death, dying and end
of life care planning. During 2017/18 the following has been achieved:
As part of the communication plan for the Dying Matters festival an article was written
and sent for inclusion in the GP newsletter and health and social care bulletin as well
emailed to the Providers Prevention Forum and the End of Life Care (EoLC) steering
group. A subsequent article about the Theatre Production was sent for inclusion in
the GP newsletter and emailed to the EoLC Steering group. Another article was
written and sent to Age UK Islington’s Get Connected magazine, Help on Your
doorstep, CEPN, Voluntary Action Islington, Union Chapel members, Age UK
Islington staff and volunteers, St Lukes, HealthWatch and the Islington Gazette.
As part of Islington’s Dying Matters Festival a Social Media campaign took place on
facebook reaching 3,751 and on twitter with a total reach of 312,763. In addition,
young people were targeted through a mailout reaching approximately 1,000. A flyer
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and poster were printed for the theatre production and distributed at events, libraries
and community centres.
Two articles appeared in ‘E-hospice’; Hospice UKs newsletter. One was written by
Joanie Speers, Future Matters volunteer for Islington, in which she tells e-hospice
how she enjoys helping people think about the end of life they would like.
http://www.ehospice.com/uk/ArticleView/tabid/10697/ArticleId/23007/language/en-
GB/View.aspx. The second article was about the workforce training progamme and
the empowering communities projects we deliver in Islington
http://www.ehospice.com/uk/ArticleView/tabid/10697/ArticleId/23036/language/en-
GB/View.aspx. These articles were also circulated to Islington's Steering Group,
commissioners, Centre 404 and forwarded to the Lead GP for End of Life Care for
further circulation.
Islington’s Dying Matters Festival 2017 was showcased at the national launch of
Dying Matters Week 2018, which took place in February 2018, as example of good
practice for community awareness raising.
A new Future Matters flyer and banner to advertise the service were developed,
printed and distributed or used at community events.
“This was an excellent workshop. Facilitators and table helpers were caring & knowledgeable. I will be
making my advance care plan now”.
ACP Workshop participant
Key Achievements and Challenges
Key Achievements during 2017/2018
The number of appointments delivered via our one to one Advice and Planning
service has remained high throughout the year.
We have delivered numerous and diverse community events and engaged with a
varied audience.
Client satisfaction is high: feedback from service users from both community events
and one to one support is always positive and rates the service as very good.
Our Death Cafes are proving to be very popular, they are often over-subscribed and
feedback is always very positive.
We have an amazing team of volunteers who are skilled and extremely dedicated.
Our Dying Matters Festival was a resounding success and was showcased at the
national Dying Matters Week 2018 conference as an example of good community
practice.
Key challenges during 2017/2018
Complexity of caseload: a higher proportion of referrals to the service are quite
complex and necessitate a higher rate of home visits. The service users’ situation
often makes it difficult to complete an advance care plan and/or for them to attend or
keep appointments. Advance care plan communication on the whole has been more
difficult to achieve.
Communications Strategy: raising awareness of death, dying and bereavement in the
general public and with professionals through varied media is important. Internal and
external communication is challenging and time consuming.
Time and financial resources: the service has been delivered for 5 years with no uplift
in funding whilst costs for staffing, resources (such as printing and stationary), travel
and other service expenses have continued to rise.
Computer system changes at Age UK Islington and lack of progress on Islington’s
“Realising the Value” project has impacted on accessing and compiling information
as well as analysing data.
Key recommendations for 2018/2019
Future Matters community workshops to increase focus on Advance Care Planning.
LBI and Gentle Dusk develop links around communication and press relations as
well as work together on social media campaigns and improving profile with key
professionals (e.g. social workers, GPs, and District Nurses).
Age UK Islington and Gentle Dusk to improve volunteer access to computer
systems.
