Annual report

2014/15 Annual Review & Summery of Accounts
1
Who we are what we do
Our vision
Our Services
A world without Motor Neurone Disease
MND Scotland provides care, information and support
services to those diagnosed with MND and their families.
Mission
To reduce the impact of MND on the lives of those affected
today and provide hope for a world without MND tomorrow.
The services are:
•
Care Team
•
Equipment Loan Service
•
Counselling Service
•
Support Groups
•
Welfare & Benefits Service
•
Information Service
•
Education Service
During the course of the illness people with MND
will usually become severely disabled in a short time.
Symptoms include losing the ability to walk, to speak, to
feed themselves and eventually to breathe unaided.
•
Holiday Service
•
Complementary Therapy
•
Augmentative and Alternative Communications (AAC)
The Charity
Research
MND Scotland was founded in 1981 by John MacLeod, who
had MND. Soon after diagnosis, John realised there was little
information or support for him and others affected by MND.
He set up the charity and began fundraising and organising
the provision of basic equipment. The following year, the first
specialist care nurse was introduced in Glasgow.
MND Scotland funds research into the disease through
universities around Scotland.
About Motor Neurone Disease
Motor Neurone Disease (MND) is a rapidly progressing and
terminal neurological disease. Approximately 160 people in
Scotland are diagnosed with MND each year, yet around
400 people have the disease at any one time due to its
poor prognosis. From diagnosis the average life expectancy
of a person with MND is 14 months.
The charity works has invested over £107,755 in research
projects over the past year and will continue to fund
research until a cure is found.
Policy and Campaigns
“ As ever we re main
Jo h n M a cL eod
opti mistic, a s Joh n
Ma cleod did, that we
will on e da y live in a
world without Motor
Neu ron e Disea se”
Since then, the charity has evolved into a national organisation
providing a wide range of different care and information
services as well as funding research projects into the disease.
The cost of running these services and funding research
are on average £1,300,000.
It is largely through fundraising efforts and generosity of
MND Scotland’s supporters that the organisation is able to
continue supporting people affected by MND. Large bases
of volunteers are at hand to help deliver the growing range
of services, with people affected by MND at the forefront of
awareness raising activities. MND Scotland wishes to let all of
our supporters know that their work is greatly appreciated
and is making a huge difference to the people affected by
MND in Scotland.
2
There are many social and welfare issues that affect people
with MND. The charity works tirelessly to raise these issues
with the country’s legislators, local authorities and health
professionals.
MND Scotland strives to give a voice to those affected
by MND who would otherwise not be heard, to
raise awareness of the disease and to promote an
understanding of the issues involved.
t
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e
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s
’
n
Chairma
WHAT a year it has been. Picking out some highlights is very difficult
when you consider the list available: Ice Bucket Challenge, Fernando
Ricksen Tribute Match, The Theory of Everything picking up an Oscar,
Gordon’s Fightback and the work of Lucy Lintott.
In addition, I write this in mid-June having just attended the annual
SCVO Charity Awards where I was left speechless – a rarity! MND
Scotland won 2 major awards that evening. The feeling of delight
and pride was immense as we were announced winners of The
People’s Choice Award - won through a public vote. Thank you to
everybody who voted and encouraged others to vote. To then be
announced as Charity of the Year rounded off a fantastic evening.
Ala st a ir Ba
illi e, C h a irm
an
I wish to highlight the work of Gordon Aikman and his Fightback team. Working with
the staff at MND Scotland, has resulted in the Scottish Government providing public money to double
the number of MND Nurses. He and his team have also assisted in our campaign for fairer Personal Care
Charging for the terminally ill across Scotland.
In addition to the above, we moved premises in March this year, to a brighter, open plan office space.
Please call in if you get the chance.
This change in our profile and fundraising position has resulted in your Board of Trustees re-visiting the
Charity’s Strategy for the next 3 years, news of which will be provided in due course.
Our Welfare and Benefits Service remains very busy. It is clear that the changes being implemented in this
area will have a major impact over the coming years and I would encourage everybody to consult with
our team to ensure you are receiving the correct funding.
We continue to develop our Education Service, Library and Information Service, Counselling and
Bereavement Service, and the support groups meeting in various parts of the country remain a success.
I would also wish to express a personal thank you to East Stirlingshire Football Club who carried our name
on their change strips throughout the 2014/15 Season.
In writing this report, I wish to express my sorrow to all the friends we have lost over the last 12 months
to MND. It is for them, their families and friends that the fight goes on.
In closing, I would like to express grateful thanks to my fellow Board members for their hard work this
last year. The work of the Board would not have been possible without the excellent support and hard
work of Craig Stockton, our Chief Executive and all of the staff at our head office in Glasgow. Also my
thanks go to the many volunteers who have assisted over the year in numerous ways. Without you all
we would be a small fraction of the charity we have grown to be. Your efforts during the last 12 months
have allowed the charity to continue providing an excellent service to people affected by Motor Neurone
Disease in Scotland and continue funding research to work towards finding a cure.
Finally, Good Luck to all those brave fundraisers who are about to set off to climb Kilimanjaro, Africa’s
highest peak, for MND Scotland.
Alastair Baillie, Chairman
3
Research
Scottish Motor Neurone Disease Audit,
Research and Trials (SMART) project
In January 2010 the Neurological Health Service standards were
launched which included three standards relating specifically to
MND. As part of the MND Scotland funded Scottish Motor
Neurone Disease Audit, Research and Trials (SMART) project
which is linked to the MND Scotland Register, an audit of these
standards was carried out with the following results:•
At least 160 people in Scotland develop MND each
year (3 per 100,000 per year), and at least 400 people
are living with the condition (7 per 100,000). There is
evidence that the disease is becoming more common.
•
During the period covered by the audit, over 96%
of people with suspected MND were seen by a
neurologist, and 99% were in contact with the MND
Care Team. 76% of patients had access to an MND
specialist multi-disciplinary team, however access to
a full range of health and social care services varied
across Scotland.
•
54% of people with suspected MND had
electromyography (EMG) performed within twenty
days of referral, and 71% were reviewed within fifteen
days of this investigation. At review, 97% were seen
by a neurologist, and 35% had contact with an MND
clinical nurse specialist within two working days. Over
90% received information about MND Scotland.
•
Only 21% of Health Boards (3 out of 14) were found
to have demonstrably effective care pathways in
place. 52% of patients had been referred to speech
and language therapists, 35% to dieticians, and 25%
required gastrostomy feeding.
•
Additional referrals were made to occupational
therapists (52%), physiotherapists (42%), and
rehabilitation services (19%). A referral for
respiratory assessment was recorded in 24% of
patients, and 12% required non-invasive ventilation.
5% required assessment by mental health services.
•
This is the first national audit of the health care of
people with MND which shows that access to care
has improved. This is an on-going research project
which will allow us to compare results year on year.
Cognitive and behavioural change
in MND: Understanding brain
dysfunction
Over recent years it has been discovered that up to 50%
of people with MND can have problems with thinking,
planning, decision making and behaviour in addition to
progressive physical weakness. Between 10-15% of these
can be diagnosed as having frontotemporal dementia
(FTD). Little is known about what causes these changes
to take place in the brain and these difficulties are often
under diagnosed and frequently picked up late by health
professionals. Studies have shown that these problems
most likely arise from damage to areas of the brain (the
frontal lobes) that control aspects of our thinking.
This MND Scotland funded research seeks to understand
where in the brain damage begins, how it develops
and why this occurs. Following people throughout
their journey with MND and using techniques such as
neuropsychological profiling, advanced neuroimaging and
high resolution electron microscopy as well as post mortem
pathological examination, it is hoped that the process that
leads to these problems can be identified and ultimately
new drugs can be developed. So far 18 people who died
from MND have donated their brain to the project and 13
patients have had samples banked for array tomograophy
and electron microscopy studies as part of the first stages
of analyses. The recognition that MND affects both
movement and “thinking” has profound implications for
our understanding of the underlying cause of MND and
for the development of new treatments.
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a ld, Gord on Aik m a
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The Car
People with MND, their partners and carers deserve the
best quality of life possible. To enable this, we provide a Care
Service with several interlinked functions, which consists of:
•
•
•
•
The Care Team
An Equipment Loan Service
Counselling
A Small Grants Scheme for people affected by MND.
This year MND Scotland spent £432,000 directly on the Care
Service, with this being a 1/3 of all expenditure.
“As a fa mily, we are extremely
grateful for the care, services and
support you provide and really can’t
praise and thank you enough. We
will forever be extremely grateful
to you all for everything you did
to care for, help and support our
wonderful Mu m and the support
you continue to provide us. Our
Mu m was an incredibly special
person and it is comforting to know
she was so well looked after and
supported.”
- Gemma and Emily Catton
Care Team Equip. Loan Counselling The Care Team
Befriending Grants MND Scotland’s Care Team provides a service across the
Support Groups fourteen health board areas in Scotland. Until the year end
Comp Therapy the charity funded eight Care Team professionals through
the NHS who are based in hospitals in Glasgow, Edinburgh,
Dundee, Nairn and Aberdeen. The Care Team aims to provide
the best quality of life for people with MND using their clinical
experience, home visits and knowledge of
Annual Case Load of Care Team
the health and social service systems.
250 Costs of Care Service
2014/15 Case load by Health Board 200 Care Team Equip. Loan Counselling The equipment loan service was initially set
up by MND Scotland to fill the gap between
a person’s need for a piece of equipment
being identified and the appropriate authority
supplying it. Due to the demand for this type of
resource, Equipment Loans have become a core
part of MND Scotlands’ Care Service.
150 100 50 Befriending Grants 0 Support Groups Comp Therapy Care Team Costs v Income
£120,000 Income £100,000 During this reporting period:
Costs £80,000 • The Care Team have
£60,000 provided
support for 585
250 2014/15 Case £40,000 people with MND, working
load by Health 200 Board £20,000 with health professionals,
social
150 care providers and
£-­‐ MND Scotland.
100 • The total direct cost of the
50 Care
Team amounted to £279,000, with MND Scotland
receiving
contributions from 4 Scottish Health Boards:
0 -----
NHS Tayside – 100% funding
NHS Highland – 50% funding
NHS Grampian – 50% funding
NHS Forth Valley – 25% funding
Equipment Loan Service
During the course of the year, over 51 pieces
of equipment were supplied to patients across Scotland.
These included riser recliner chairs, power wheelchairs and
profiling beds.
--
“MND
n
e ss e nt i u rs e s a re a n
al
t h rou g s u ppo rt fo r
ho
su
t h e out ut, but pa rt i f fe re rs
cu
se
u nt il t h t a n d ea rli e l a rly at
r
e
p l a ce a wi d e r n et wo m o nt h s
rk i s i n
n d e st
a
b
l
i s h ed.”
- MND
S co t l a
n d Ca r
e Se rv i
ce u s e
r
5
AAC Project
The AAC (Augmentative and Alternative Communications) project began in 2012 as a pilot project to supply equipment to
people whose communication has been impaired by MND.
Demand for this service continues to increase and, as such, in February 2015 Ian Stuart took up a part time post as Inclusive
Technology Coordinator to manage the equipment and software the service lends out.
This year, 31 people with MND have benefitted from the AAC project, through a variety of loans including:
-----
iPads, with appropriate apps
Cameras
Several computers including PCs and Laptops
Tobii eye-gaze units
Personal Story
started
in March 2012. He
ND
M
ith
w
ed
os
gn
a
Kilmarnock was dia
pplied Gilbert with
Gilbert Ronald, from
later. Our service su
s
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bii
on
To
a
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es
18
us
ice
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vo
no
in his
ogressed, he
pr
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to notice a change
itio
nd
co
late 2013 and, as his
Smart Nav Pro 4 in
p PC.
PC Eye-Go and lapto
in g not be in g able to
at
str
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’s
It
.
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gs
in
th
“My vo ice is on e of th e la st m e down so m et im es. I’ve ne ve r ha d to bu y
gets
sa y th e thin gs I thin k. It
eryt hi ng. Th e equi pm ent
ev
d
lie
pp
su
nd
la
ot
Sc
ND
an yt hi ng (equi pm ent) as M , I ca n go on lin e or I ca n co m m un icate”
en ce
give s m e a bit of in de pe nd
Gilbert said:
Gilbert R on al d & fa m
ily
Mark Craig said:
ry
Personal Sto
was
om Glasgow
Mark Craig, fr
ust
h MN D in Aug
diagnosed wit
st few months
2013. In the la
ted to find his
Mark has star
affected, which
speech being
him feel “more
he said made
hen
lf-conscious w
isolated and se
AAC service
speaking”. Our
k with a Tobii
provided Mar
him
ch now helps
eye-gaze whi
ts to
what he wan
communicate
ls.
detailed emai
say and write
“This piece of equipm ent has been fantastic for me. It means I can still
continu e to work and interact with others through social media even after
the use of my fingers had deterio rated. Thank you MND Scotlan d.”
Holiday Service
Counselling
Throughout the course of the year, our Counselling
Service was completely revamped with the aim of giving
better value for money and reaching more people who
would benefit from the service.
The new model is much more efficient both in terms
of being cost-effective and in pairing MND patients
with councillers. Feedback received indicates the revised
service is now linking clients with counsellors faster than
previously, our coverage is greater and the costs are
much less.
Throughout the year, 63 clients received counselling
sessions, equalling 558 in total.
The service is on-track to double the number of users
compared to the previous year.
6
Ji m G ra nt at Tra le
e Ba y
MND Scotland offers
relaxing holiday
accommodation in
beautiful surroundings at
the Lang Break caravan
near St Andrews and the
Tralee Bay chalet near
Oban. Both facilities
are adapted for people
with disabilities, and
have once again been
in high demand in the
past year.
“I had heard from people who had used the chalet that
it was great. This is an understatement. I cannot find
the words to tell you how much we enjoyed our break”
“Just wanted to say a huge thank you for our week in
the Lang Break caravan at St Andrews! The caravan
provided everything we needed and more, the site was
lovely and peaceful. Just the break we all needed!”
- Tralee Bay guest
Small Grants Scheme
In an economic climate making life tougher, particularly for those
with disabilities, our small grants have helped reduce the financial
pressure felt by many people affected by MND.
Over this past year 59 people with MND have received small grants
from MND Scotland, totalling £22,360. These grants have helped
towards home adaptations, legal costs, wet rooms, travel costs and
mobility vehicles.
Time to Live Grant Scheme
With a second year of funding from Shared Care Scotland’s Creative
Breaks Fund, MND Scotland has again been able to help people
with MND and their carers to enjoy a holiday or break from daily
routine. We were delighted to receive £15,000 from Shared Care
Scotland, and MND Scotland has added further funding to meet
demand for the grants. This past year we have awarded 54 grants
for trips including family holidays, birthday celebrations and even a
honeymoon!
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li k e t l a n d
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“I
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a ll at r ki n d n e ss a n It
fo r y ou fo r t h e g ra nt. ce”
s u ppo rt a d e a dif fe re n a n d
S co t l
D
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M
ce u s e r
e rv i
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s m a ll g
Grants can be used for any kind of ‘time out’; for example one carer has recharged her batteries with regular gym sessions,
while another has had refresher driving lessons so that she can take her husband with MND out for a change of scene. For
everyone, these grants have made a really positive impact.
“I have already tha nked you
for ma king this last holiday
for my mu m possible but I
ca n’t say in words just how
special a gift it was. It gave
us something special... a nd
precious me mories for us a nd
her gra ndchildren. I hope other
fa milies benefit as we have.”
- Kimberley, F ife
7
s
e
c
i
v
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S
Direct
Welfare and Benefits
The Welfare and Benefits Service provides support and advice on the complicated welfare and benefits system,
to people with MND and their families.
There are two Welfare and Benefits Officers covering Scotland with a North and South split. The value of this
service lies in the knowledge and experience of our two Welfare and Benefits Officers, which allows them to
anticipate the future needs of their clients. Clients may self-refer or can be referred via their Care Team member.
During the year, the service recorded the following activity:
•
362 new clients
•
--
277 of these were people with MND
--
85 were carers and family members.
255 home visits were undertaken. Clients were also assisted by
email, telephone calls and office visits.
•
£ 1,727,946.93 of benefits were awarded to clients in the year
Feedback from clients of our Welfare and Benefits
Officers
Nic
O
Be n e f it s
e
r
a
lf
e
,W
o l a Po ve y
Support Groups
f f i ce r
lle nt - didn ’t ha ve an y
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ex
s
wa
s
fit
ne
be
ith
w
“T he he lp
fit re ce ived qu ickly”
proble ms at all an d be ne
“Eve rything I’ve expe rien ced has bee n don e with sincere
gen uine kind hea rted ness. The We lfare and Ben efits
Officer is an ang el and has bee n astoundingly kind, as
well as professional and efficient.”
ex ce lle nt, a hu ge he lp”
“Welfare an d Be ne fit s off ice r is
MND Scotland has 8 support groups across Scotland. These groups
meet on a bi-monthly basis and provide an opportunity for people
with MND, their carers and family to meet, share their experiences
and discuss the issues affecting them.
During the past year, there were a total of 40 group meetings with
418 participants. The meetings provide people with a chance to find
out about local information and services but
also to seek advice from professionals
who come to speak to the group.
Over the year they have had
handy hints from Occupational
Therapists, hand and arm
massage demonstrations and
talks from the DNA and Voice
Bank research projects.
Ayrshire Support Group
8
“My wife and I have just got back from our
first MND Scotland support group and we
have to say that we both had a fantastic
time. We had no idea what to expect, but
we loved it all the sa me. As MND is such
an isolating disease, my wife as a sufferer
and myself as a carer both see these groups
being invaluable in the future and we’ ll
be making a special effort to get to future
groups. Thank you MND Scotland and all
the people that help!”
- Will Morton who attended the
F ife Support Group with his wife Dawn
Complementary Therapy
Information
The complementary therapy programme which delivers
treatments such as massage, Reiki and reflexology to clients
within their own homes continues to be very popular.
The Information Service exists both as a resource for
people affected by MND and those wishing to know more
about the condition.
The past year has been the busiest yet for the
complementary therapy programme:
• 74 clients received therapy treatments
• 56 of those were people with MND
• 18 were carers of people with MND
• Treatments were provided across 10 Health Board areas.
• There were 3 training courses across the year to recruit
new therapists
The service responds to enquiries from people seeking
specific information either related to the condition itself
or to living with the condition. In addition, MND Scotland
maintains a comprehensive library providing up to date
resources with the latest information in both print and
electronic media.
“Brilliant! The whole experience toned and
relaxed me and just having the time to
talk with the therapist made it an excellent
experience. Anyone suffering from MND
should be actively encouraged as I have found
it so beneficial”
- MND Scotland
Complementary Therapy service user
The service was also taken advantage of by MND Scotland
runners at the Edinburgh Marathon, The Great Scottish
Run, the Loch Ness Marathon and the Antonine Trail.
Co
t a ry T h e
m p le m e n
Throughout the year, our Information Officer responded
to over 120 enquiries.
Education
Hosted by our Education Officer, the Education Service
provides information evenings for people with MND, their
families and carers.
In addition, the Education Officer travels throughout
Scotland raising awareness of the impact of MND, amongst
health and social care professionals. Health professionals
and carers find our Education Service to be invaluable in
highlighting the major challenges the disease can present
to those working with people affected by MND.
In the past year, the Education Service has delivered the
following:
•
10 sessions to care homes
•
7 sessions to private care agencies working with
people affected by MND
•
2 sessions to hospices
•
1 session to Fife palliative care service annual
conference
•
1 to Glasgow Greater & Clyde Palliative Resource
Nurses
•
15 sessions to Allied Health Professionals
•
3 family information evenings
•
Additionally, 5 sessions to student nurses, 1 session to
student Occupational Therapists, 1 college access to
nursing course, 1 primary school and organised study
days for staff in Orkney
•
Throughout these sessions, almost 1000 people were
reached. These included professional Carers, GP’s,
Nurses, Student Nurses and Student Occupational
Therapists.
ra p i e s
9
g
n
i
s
i
a
r
d
n
a
g
n
i
n
g
i
a
Camp
By campaigning and raising awareness, MND Scotland hopes to increase understanding
of the illness and its devastating impact, achieve change, raise funds to improve the lives
of those affected and ultimately help find a cure. Some of our 2014 – 15 highlights are
outlined here.
Campaigning
Personal Care Charging Campaign
At the start of MND Awareness Week in June 2014, we launched our Personal
Care Charging Campaign which highlighted the postcode lottery of care
charging in Scotland for those under 65, who are terminally ill. The campaign
was immediately picked up by BBC Scotland, receiving TV, online and radio
coverage. This led, within a couple of days, to campaign commitments from
both Health Ministers stating terminally ill people under 65 should not be
charged for personal care. A high profile local authority U-turn followed
and, after a meeting with our Chief Executive and Gordon Aikman, a further
campaign commitment came from the First Minister later in the year.
One campaign objective was improved COSLA care charging guidance and by
working closely with COSLA, this was introduced in April this year. The First
Minister has stated that if local authorities do not follow this guidance, the
Scottish Government will introduce legislation to ensure they do.
A n dy M
a st e rs o n o
n BB C Sc
ot la n d
People with MND and other terminal illnesses who are under 65 years should
now no longer be charged for their personal care. We will continue to monitor
the situation on the ground and keep the First Minister informed. We will still
pursue our one outstanding campaign objective – that ‘local authorities be fully
transparent in their charging policies and have their full policy online’.
Gordon’s Fightback
Gordon Aikman was just 29 when he was diagnosed with MND in May of last
year. Two weeks later, Gordon got in touch with MND Scotland to say he
would like to use his political experience to benefit all those with the illness
in Scotland. Working with MND Scotland, Gordon’s Fightback campaign
was launched shortly afterwards. The campaign called for a doubling of
MND research funding; fast-tracking welfare benefits for people with MND;
outlawing care charges; paying MND nurses from the public purse; and,
doubling their number.
Go rd o n ’s F
ig ht ba ck
MND nurses announcement
So far, Gordon has fully met his final two objectives with an announcement from the First Minister in January of this year
that MND Scotland’s nurses would be doubled and paid for by the Scottish Government. Doubling MND nurse numbers
means they won’t have so far to travel across the country and, as a result, be able to spend more quality time with their
patients. Funding the nurses from the public purse has saved MND Scotland an incredible £350,000 per year which we will
use to develop new services for people with MND and their families.
Gordon’s Fightback continues to develop with his other campaign aims in progress. Gordon is now an MND Scotland Trustee.
10
s
s
e
n
e
r
a
aw
Working with the Scottish Parliament
MND Scotland continually works with MSPs and Minsters across a range
of issues but a 2014 highlight was our Scottish Parliament reception,
held during MND Awareness Week. Hosted by our long-time supporter,
Christina McKelvie MSP, the then Minister for Public Health, Michael
Matheson MSP, was our guest speaker. Mr Matheson publicly supported
our work and backed our campaigns. 40 MSPs took part (a very high
number for such events) and spoke to our 90 guests, predominantly
people with MND and their families, about issues important to them.
Mich a e l M
at h e
Min ist e r f s o n MS P (fo rm e r
o r Pu blic
H ea lt h)
Working with Westminster
On the 4th November 2014, Mrs Samantha Cameron hosted a reception for
MND Scotland at No 10 Downing Street. The event was initiated by the
Gordon’s Fightback team. Our guests included people with MND and their
families as well as long-time fundraisers for the charity. The reception was
a great opportunity to highlight Gordon’s Fightback, MND Scotland work
and campaigns with MPs and Ministers.
In March of this year, our Chief Executive and Gordon Aikman met with
UK Health Secretary, Jeremy Hunt, to discuss the funding of UK research
into MND. This led to Mr Hunt ordering a review of funding cuts in
MND research.
C ra ig St oc
kt o n, Je re m
y
Go rd o n Aik H u nt MP,
ma n
Increasing awareness
2014 – 15 has been an incredible year for MND and MND Scotland
awareness. Public awareness of MND is at an unprecedented high
following the Ice Bucket Challenge, Gordon’s Fightback, Fernando Ricksen’s
awareness raising and many others. One of our supporters summed up
the global, feel-good effect of the Ice Bucket Challenge on social media by
stating “It’s a worldwide phenomenon and for once it’s about us!”
Coverage of the illness and MND Scotland’s services and campaigning has
increased beyond expectations in social media and the press by hundreds
of percent. For example, MND Scotland has 8 times as many new Twitter
followers this year and has had 7 times as many visits to our website. Press
coverage has also greatly increased, with the Ice Bucket Challenge and
MND nurses funding announcement, leading to at least 10 times and 4
times, respectively, more press coverage for MND and MND Scotland.
Our goal for the future is to ensure that the momentum and awareness
of MND and MND Scotland continues to rise.
Fo rm e r F ir
st Min ist e
r, Alex Sa
lm o n d M
I ce Bu ck et
P, d oe s t h
C h a lle n g e
e
fo r MND
Scotl a n d!
11
g
n
i
s
i
a
r
d
Fun
Without our fundraisers and supporters MND
Scotland simply would not exist. MND Scotland
relies almost entirely upon supporters fundraising
and throughout this year a record number of
people have taken part in MND Scotland organised
events as well as organising their own events.
Sources of Income 2014/15
We also continuously hear from supporters
that fundraising helps them to feel that they
are doing something to make a difference.
Fundraising empowers people affected by MND
and can be a positive experience in helping them
cope with the disease.
Incredible fundraising and awareness raising highlights this year include:
The Ice Bucket Challenge
Like most countries across the globe, Scotland
embraced last summer’s Ice Bucket Challenge. It is
still the most successful fundraising campaign for
MND Scotland, raising an incredible £455,920.79
and more importantly, a huge amount of
awareness.
The stars of Scotland’s ice bucket challenge
were our supporters, including 92 year old Frank
Bleakley, who completed the challenge in memory
of his wife Myra, and 2 year old Lexi Brown, who
donated from her own piggy bank.
12
Fundraising Dona-ons Legacies Gi2 Aid Grants & Trusts Other Income Gordon’s Fightback
Gordon Aikman has not only been fighting
for political change for those affected by MND
but for increased funds into MND research
so that ultimately a cure for the illness can be
found. Through his JustGiving page and holding
events such as stand-up comedy nights, Gordon
has so far raised a staggering £310,000 for MND
Scotland, solely designated for research. His latest
fundraising target is £500,000 and we are sure it
won’t be long before he smashes that.
Fernando
Ricksen
Our amazing supporters
Fernando Ricksen
was diagnosed with
MND in October 2013.
At the beginning of
2015 Rangers Football
Club hosted a tribute
match, from which
MND Scotland were
one of the grateful
beneficiaries. Since
then fans have been
inspired by Fernando and not only went to the match
but have been taking part in zip-slides, marathons and
organising their own fundraising activities.
This past year of fundraising wouldn’t have been what it was
without all of our supporters up and down the country. In their
thousands people took part in Marathons, Race Nights, Quizzes,
Dress Down Days, Cake Sales, Golf Days……..and much more. Our
annual Strathclyde Park Fun Run even broke the record with over
1000 participants. From the bottom of our hearts, thank you!
13
Trusts and Gr
ant Funders
We are immensely grateful to all the charitable trusts and grant funders listed below for their generous support. Of major
awards received, the Bank of Scotland Foundation again made a significant contribution to our Welfare and Benefits
service, and Shared Care Scotland renewed funding for our increasingly popular Time to Live grant programme for short
breaks or other ‘time out’. The Scottish Government has enabled us to develop our provision of Assistive Communications
equipment with funding for an Inclusive Technology Coordinator to run the service. Many other trusts have maintained
their annual support of our core work and we greatly appreciate this long-standing assistance.
Albert Hunt Trust
Andrew Paton’s Charitable Trust
Appletree Trust
Astor of Hever Trust
Bank of Scotland Foundation
Celtic FC Foundation
Colonel T R Broughton’s Charitable
Trust
Cruden Foundation
DWT Cargill Fund
Darroch Charitable Trust
Evelyn Drysdale Charitable Trust
Gamma Trust
IBB Trust
J & J R Wilson Trust
JTH Charitable Trust
James Weir Foundation
James Wood Bequest Fund
Lynn Foundation
M V HillhouseTrust
Margaret Murdoch Charitable Trust
Merchants House of Glasgow
Miss I F Harvey’s Charitable Trust
Nancie Massey Charitable Trust
Netherdale Trust
Northwood Charitable Trust
P F Charitable Trust
Peter Brough Bequest Fund
Princess Anne’s Charities Trust
R J Larg Family Trust
Ronald Miller Foundation
St Katharine’s Fund
Scottish Government Section 16b
Grants Scheme
Shared Care Scotland
Sir Iain Stewart Foundation
Souter Charitable Trust
Talteg Limited
Tay Charitable Trust
Templeton Goodwill Trust
Summary of Income & Expenditure
ch 2015
For the year ended 31 Mar
Income
Fundraising Activities
Donations
Legacies
Grants
Investment Income
Membership Subscriptions
Total
14
£
£Expenditure
144,952
Research
834,019
580,763
visory Service
Ad
re
Ca
5
,03
10
1,4
226,781
on
279,607Informati
238,213
g
89,626Fundraisin
e 131,602
Generating Voluntary Incom
7,615
24,068
Governance
724
2,621,626Total
1,346,379
t
r
o
p
e
R
s
’
r
e
Treasur
It has been an incredible year for MND Scotland
and the financial statements reflect this.
The charity’s income almost doubled, reaching
£2,621,626 in the 12 months to 31 March 2015, in
comparison to £1,355,577 for the same period in 2014.
Most notably from; the Ice Bucket Challenge and
fundraising by our new Trustee Gordon Aikman. These
two events have also had an impact on our general
fundraising income; as awareness of the disease and the
charity has risen, so too has our general fundraising and
donations.
Legacies have continued at a high level this year,
reaching £279,607 compared with £301,304 last year.
The other sources of the charity’s income have all
performed as expected, with the exception of Trusts
Income which has been significantly impacted by the
charity’s financial success, dropping by £25,000.
Expenditure has again been closely monitored by the
charity’s Finance Department and costs are continually
being reviewed against budgets and for potential
savings. Total expenditure has risen from £1,228,812
in 2014 to £1,346,379. This is in line with budgeted
expenditure, and there have been extra costs incurred
as a result of the heightened awareness and fundraising
activity.
Significant costs were recorded this year with the
charity’s move to new office premises. However, the
new premises are rent free due to the organisation’s
charitable status and, with savings of around £25,000
per year, it is hoped that they will not only help to
improve the charity’s service provision, but provide
significant savings in the 3 years ahead.
Expenditure on research was in line with last year as the
charity continues to fund the MND Scotland Register
and two smaller projects by the University of Edinburgh.
Due to a shortfall in external funding, the charity
provided a “top up” to the funding available for Time
to Live Grants. As the external funding ends, the charity
will fully fund this grant going forward.
With the unexpected upsurge in income occurring
within such a short space of time, the charity’s reserves
have grown dramatically to £2,613,370 at 31 March 2015
(2014 - £1,308,988). This level is significantly higher than
the charity’s reserves policy of 6 to 9 months of ordinary
operating expenditure, but significant expenditure is
Will R oberts (A
ct in g Trea su re r)
planned for the next 3 years, and this is reflected by the
creation of a number of Designated Funds.
The Designated Funds have been created to earmark
funding for specific projects over the next 3 years.
The monies raised through the Ice Bucket Challenge
have been split between various projects (please see
Trustees Report for further information).
£285,000 has been designated to fund the MND
Scotland Register for the next 3 years and, coupled
with the restricted funds raised by Gordon Aikman,
the charity is committing almost £1,000,000 towards
funding research over the next 4 years.
The creation of the Development Fund has designated
funding of £150,000 for the development of new
services that the charity plans to implement in the
forthcoming year.
15
Summarised
Statement o
f Financial A
ctivities
Unrestricted
tricted
General Designated Res
funds
funds
Fund
£
£
£
2014
Total
£
2015
Total
£
Incoming resources
generated funds
Incoming resources from
Voluntary income
ds
Activities for generating fun
Investment income
Total incoming resources
1,188,097
834,019
7,615
-
591,895
-
1,779,992
834,019
7,615
755,398
578,423
21,756
2,029,731
-
591,895
2,621,626
1,355,577
(1,549)
(1,549)
(131,602)
(238,213)
(109,768)
(193,066)
(233,532)
(952,496)
(904,386)
(24,068)
(21,592)
Resources expended
Costs of generating funds
ary
Costs of generating volunt
costs
income fundraising trading
Charitable activities
Total resources expended
resources before
Net (outgoing)/incoming
losses
other recognised gains and
ses)
Other recognised gains/(los
assets
nt
Unrealised gain on Investme
in funds before transfers
Transfers
Reconciliation of funds
rd
Total funds brought forwa
rd
Total funds carried forwa
16
-
(718,127)
(837)
(24,068)
Governance costs
Net movement
(130,053)
(236,664)
-
-
(1,108,912)
(837)
(236,630)
(1,346,379)
(1,228,812)
920,819
(837)
355,265
1,275,247
126,765
29,135
11,758
1,304,382
138,523
-
29,135
-
949,954
(837)
(955,000)
955,000
1,272,375
3,748
32,865
1,308,988
1,170,465
1,267,329
957,911
388,130
2,613,370
1,308,988
355,265
-
-
-
t
e
e
h
S
e
c
Balan
2015
£
£
Fixed assets
Tangible
assets
Investments
Current assets Debtors
Investments
Cash at bank and in hand
Creditors: amounts
falling due within one
year
Net current assets
Net assets
Funds
Unrestricted funds
General fund
Designated
funds
Restricted funds
15
as at 31 March 20
2014
£
£
145,674
254,889
154,065
201,754
400,563
244,988
1,138,369
1,061,401
2,444,758
355,819
130,390
862,035
146,554
1,138,979
(231,951)
(185,810)
2,212,807
2,613,370
1,267,329
957,911
388,130
2,613,370
953,169
1,308,988
1,272,375
3,748
32,865
1,308,988
The financial statements are
prepared in accordance wit
h the special provisions of Par
Companies Act 2006 relating
t 15 of the
to small companies (effective
April 2008).
The financial statements we
re approved and authorised
for issue by the Directors on
and signed on their beh
11th of August 2014
alf by:
Will Roberts
Director
17
t
r
o
p
e
R
’
s
Trustee
The Trustees present their abridged report and the financial statements of the
charity for the year ended 31 March 2015.
Trustees
The Directors of the charitable company are its Trustees for
the purpose of charity law and throughout this report are
collectively referred to as the Trustees.
The Trustees serving during the year and since the year end
are detailed on page 22.
Governing document
The organisation is a charitable company limited by
guarantee, incorporated on 3 April 2001 and registered
as a charity on 3 April 2001. Prior to incorporation, the
Association was a charitable trust. It is registered as a
charity with HMRC and the Office of the Scottish Charity
Regulator.
The Trustees have a risk management strategy that
comprises a quarterly review of the financial, operational
and management performance of the charity.
Monitoring
The Care Advisory Service is subject to regular monitoring
by the charity and by survey returns from users of the
service. The equipment hire and library services are
monitored in a similar manner.
OBJECTIVES AND ACTIVITIES
The objectives of the charity are:
•
To provide relief and support for those affected by
motor neurone disease
•
To provide items, services and facilities of assistance
which are not readily available elsewhere
•
To promote research into motor neurone disease and
make the results public
Members of the charitable company guarantee to
contribute an amount not exceeding £1 to the assets of
the charitable company in the event of winding up. The
total number of such guarantees at 31 March 2015 was 891.
•
The strategies employed to assist the charity to meet
these objectives included the following:
•
The provision and funding of a national Care
Advisory Service
Appointment of Trustees
•
The provision of a specialised equipment hire and
delivery service
•
The promotion of research and provision of a library
service to disseminate information
The company was established under a Memorandum of
Association which established the objects and powers of
the charitable company and is governed under its Articles
of Association.
Under the Articles of Association, the members of the
National Executive Committee are elected at the AGM to
serve a period of 3 years, subject to ratification at each
AGM.
Trustees’ induction and training
New Trustees receive specific written and verbal induction
training. Ongoing training and education takes place in
conjunction with the quarterly board meetings and at
other specific occasions.
Organisational structure
The Board of Trustees, which can have up to 14 members, is
responsible for the management of the charity. The board
may appoint a Chief Executive and delegate such powers
and duties as thought fit.
Risk management
The Trustees continually assess the major risks to which
the charity is exposed, in particular those related to the
operations and finances of the charity. The Trustees are
satisfied that systems are in place to mitigate exposure to
the major risks.
18
Reserves policy
In setting the reserves policy, the Trustees wish to ensure
that the charity’s core strategic objectives are able to
continue in the immediate future and that reasonable
future financial contingencies are covered.
In setting the level of reserves that should be retained,
the charity has taken into account the following factors:
planned budget deficits, existing commitments, risks
associated with existing income streams, risks associated
with the development and creation of new services and
the risk and effects of any known external factors or
contingencies.
The policy is to hold funds which are free reserves at a
level of 6-9 months’ general expenditure. This level of
reserves and opportunities to utilise any surpluses are
under regular review. Planned budget deficits for the next
three years, together with the Strategic Plan for 2016-2019
are expected to utilise the surplus of unrestricted reserves
which currently exists over the stated policy level.
Investment policy
The Trustees may invest funds not immediately required in
any investments, securities or property as may be thought
fit. The Trustees have decided that surplus funds be placed
on deposit with secure major financial institutions at the
best rate of interest available.
Grant policy
The charity may make significant grants for research purposes
as stated in the objectives. All such grants are reviewed by the
charity’s appropriate research specialist and research committee
and their recommendations considered by the Board prior to
any decision.
Small grants of up to £400 each may be made for social
and welfare purposes to individuals with MND. These are
administered by a sub-committee of the Board within the
overall restrictions decided by the full Board. A new grant
scheme that has been created and will start in 2015 will
follow the same administration guidelines and provide
financial assistance to those affected by MND.
Plans for future periods
A new three year strategic plan for the organisation
has been developed. The strategy is ambitious and
aspirational and will require significant support, both
financial and tangible in the form of time and talents
of the MND community and general public in order to
achieve its key aims. It focuses on three key themes;
Hope, Quality of Life and Service Excellence.
The strategy aims to create an environment in which we
provide hope for those affected by MND. To do this we
will fund, encourage and promote research that increases
our understanding of MND and brings us closer to a time
when a cure can be found. We will provide supporters
with opportunities to contribute to current and future
work of MND Scotland.
We will seek to improve the quality of life of those living
with and affected by MND through empowering them,
reducing isolation and improving the support they receive.
We will lead the way in MND Care and Support by
providing services directly, and in partnership with
others, which conform to best practice and encourage
other organisations to improve and develop their
services to people with MND and their carers.
In order to achieve the aims of the strategy, new
designated funding streams have been established for
specific areas. Using money raised from the Ice Bucket
challenge, £300,000 has been set aside to look at
bringing together MND care and research functions in
order to improve the existing care of people affected by
MND and to provide essential data that will allow future
care to be better tailored to an individual’s needs. This
will form a foundation for developing and establishing
focused clinical research.
A further £150,000 of
the Ice Bucket Challenge
money has been
designated towards
developing existing
and new services. This
will include expanding
and increasing
access to the existing
complementary therapy
service and ensuring the continuation of the
successful ‘Time to Live’ grants that help towards the cost
of a holiday or other ‘time out’ activity.
The MND Register was re-established in 2010 via research
funding from MND Scotland. In recognition of the
importance of having reliable and accurate data on an
MND population and therefore to be able to provide
epidemiological and clinical data that has the ability to
attract future research projects and form the foundation of
possible clinical trials in Scotland, funding has been identified
to underwrite the register for the period of the strategy.
Recognising the increasing burden that changes to the
welfare and benefits system are placing on individuals
and the pressures that local authority and statutory
services are facing on the provision of aids and
adaptations, it is anticipated that MND Scotland will
receive an increasing number of requests for financial
assistance. A new MND Scotland grant will therefore
be established to provide limited help to reduce the
financial burden faced by those affected by MND.
On the campaigning front, for MND Awareness week in
June this year, we highlighted some of the difficulties that
losing the use of your voice from MND can cause. Not
having the ability to speak can be devastating and for
some people it is regarded as one of the worst aspects
of the disease. Being unable to communicate can lead
to frustration and social isolation and not being able to
communicate in your own voice robs you of part of your
individual personality. During MND awareness week we
campaigned for improved provision of communication
aids; holding an exhibition at the Scottish Parliament and
encouraging people to gain an insight into how it feels to
experience having no voice by taking part in our ‘Silence
Speaks’ campaign.
Working with the NHS, Local Authorities and the
Scottish Government, the charity will continue to
campaign to develop the care service to the extent that
a basic level of care can be expected no matter where
people live within Scotland.
19
t
r
o
p
e
R
s
’
r
Audito
Independent Auditor’s Report to the
Trustees of MND Scotland
We have audited the financial statements of MND Scotland
for the year ended 31 March 2015 which comprise the
Statement of Financial Activities, the Balance Sheet and
the related notes. The financial reporting framework that
has been applied in their preparation is applicable law
and the Financial Reporting Standard for Smaller Entities
(Effective April 2008) (United Kingdom Generally Accepted
Accounting Practice applicable to Smaller Entities).
This report is made exclusively to the charity’s Trustees, as
a body, in accordance with Section 44 (1)(c) of the Charities
and Trustee Investment (Scotland) Act 2005 and Regulation
10 of the Charities Accounts (Scotland) Regulations 2006.
Our audit work has been undertaken so that we might
state to the charity’s Trustees those matters we are
required to state to them in an auditor’s report and for no
other purpose. To the fullest extent permitted by law, we
do not accept or assume responsibility to anyone other
than the charity and its Trustees as a body, for our audit
work, for this report, or for the opinions we have formed.
Respective responsibilities of
Trustees and Auditor
As explained more fully in the Trustees’ Responsibilities
Statement (set out in the Trustees’ Annual Report), the
Trustees (who are also the Directors of the charitable
company for the purposes of company law) are responsible
for the preparation of the financial statements and for
being satisfied that they give a true and fair view.
The Trustees have elected for the financial statements to
be audited in accordance with the Charities and Trustee
Investment (Scotland) Act 2005 rather than also with the
Companies Act 2006. Accordingly we have been appointed
as Auditor under Section 44(1) (c) of the Charities and
Trustee Investment (Scotland) Act 2005 and report in
accordance with that Act.
Our responsibility is to audit and express an opinion on the
financial statements in accordance with applicable law and
International Standards on Auditing (UK and Ireland). Those
standards require us to comply with the Auditing Practices
Board’s [APB’s] Ethical Standards for Auditors.
20
Scope of the audit of the financial
statements
An audit involves obtaining evidence about the amounts
and disclosures in the financial statements sufficient to
give reasonable assurance that the financial statements
are free from material misstatement, whether caused by
fraud or error. This includes an assessment of: whether
the accounting policies are appropriate to the charitable
company’s circumstances and have been consistently and
adequately disclosed; the reasonableness of significant
accounting estimates made by the Trustees; and the overall
presentation of the financial statements. In addition, we
read all the financial and non-financial information in the
Trustees’ Annual Report to identify material inconsistencies
with the audited financial statements. If we become aware
of any apparent material misstatements or inconsistencies
we consider the implications for our report.
Opinion on financial statements
In our opinion the financial statements:
•
Give a true and fair view of the state of the charitable
company’s affairs as at 31 March 2015 and of its
incoming resources and application of resources,
including its income and expenditure, for the year then
ended;
•
Have been properly prepared in accordance with
United Kingdom Generally Accepted Accounting
Practice; and
•
Have been prepared in accordance with the
requirements of the Companies Act 2006, the Charities
and Trustee Investment (Scotland) Act 2005 and
Regulation 8 of the Charities Accounts (Scotland)
Regulations 2006 (as amended).
Matters on which we are required to
report by exception
In respect of the following matters where the Charities
Accounts (Scotland) Regulations 2006 (as amended)
requires us to report to you if, in our opinion:
•
The information given in the Trustees’ Annual Report
is inconsistent in any material respect with the financial
statements; or
•
The charitable company has not kept proper and
adequate accounting records; or
•
The financial statements are not in agreement with
the accounting records and returns; or
•
We have not received all the information and
explanations we require for our audit.
We have nothing to report in respect of these matters.
Mark Mulholland F.C.C.A. (Senior Statutory Auditor)
for and on behalf of
Alexander Sloan
38 Cadogan Street
Chartered Accountants and
Glasgow
Statutory Auditor
G2 7HF
Alexander Sloan is eligible to act as an auditor in terms of
Section 1212 of the Companies Act 2006
11th August 2015
21
Office Beare
rs, Directors
and Staff
Board of Directors/Trustees
Alastair Baillie
Robert Harvey C.A.
Robert Allan
Dr George Gorrie
Dr Judith Huggan
Dr Robert Swingler
William Roberts
Elizabeth Findlay
Gordon Aikman
Lawrence Cowan
Graeme Hardie Ann Kerr
Christine McWhirter
Shuna Colville
Chairman
Treasurer (Resigned 22/11/2014)
Chief Executive
Craig Stockton
(Appointed 22/11/2014)
(Appointed 22/11/2014)
(Appointed 22/11/2014)
(Resigned 17/08/2014)
(Resigned 17/08/2014)
(Resigned 22/11/2014)
Financial Controller Andrew Luke
Principal Office and City View
Registered Office
6 Eagle Street
Glasgow
G4 9XA
Auditors
Alexander Sloan
Chartered Accountants
38 Cadogan Street
Glasgow
G2 7HF
Head Office Staff
Craig Stockton Mairi Hughes Iain McWhirter Volunteering
Chief Executive
Officer Administrator
Head of Fundraising and
Lisa Glenday Virginia Hewitt
Christine Arnott
Dawn Hamilton Susan Webster Gemma Bradley
Robert Bestow John Brown Lynn Black Ian Stuart Nicola Povey Maggie Edwards
Andrew Luke Alison Gardiner Community and Events Fundraiser
Trust Fundraiser
Fundraising Administrator
Volunteer Development Officer
Head of Policy and Campaigns Communications Officer
Head of Direct Services
Equipment Store Co-ordinator
Information Officer
Inclusive Technology Coordinator
Benefits and Welfare Officer (South)
Benefits and Welfare Officer (North)
Financial Controller Finance Officer
Care Team
Research Committee
Carole Ferguson RGN, HV, cert, BSc
MND Clinical Specialist, Southern General, Glasgow
Laura Cunningham RGN, DN, MSc
MND Clinical Specialist, Southern General, Glasgow
Judith Newton RGN, DN, MSc
MND Clinical Specialist, Western General, Edinburgh
Gill Stott, RN
MND Clinical Specialist, Western General, Edinburgh
Andy Bethell
MND Clinical Specialist, Nairn Town & County Hospital, Nairn
Carolyn Webber MND Clinical Specialist, Ninewells, Dundee
Dympna McAleer
MND Clinical Specialist, Ninewells, Dundee
Dianne Fraser Dip COT, Cert Counselling MND Clinical Specialist, Maternity Hospital, Aberdeen
Prof Hugh Wilson
Dr Joanna Ferrie
Dr George Gorrie
MND Scotland Research Nurse
Laura Stephenson
Bankers
Bank of Scotland
836 Crow Road
Glasgow
Dr Judith Huggan
Patrons
Vanessa Collingridge
Dr Winifred Ewing
Scott Hastings
Lesley Riddoch
22
G13 1ET
Founder
John MacLeod
Royal Patron
HRH The Princess Royal
MND Scotland is the only charity funding research
and providing care and information for people
affected by Motor Neurone Disease in Scotland.
MND Scotland
2nd Floor
City View
6 Eagle Street
Glasgow
G4 9XA
0141 332 3903
[email protected]
www.mndscotland.co.uk
facebook.com/MNDScotland
twitter.com/MNDScotland
Scottish charity no. SC002662. Company limited by guarantee,
registered in Scotland no. SC217735
24