myaware mynews Summer 2015

news
INSIDE: MEDICINE MATTERS BENEFITS FEEDBACK NEWS BRANCHES AROUND THE REGIONS
myaware
Summer 2015
KIDS WEEKEND 2015
O
n Saturday 27th June, myaware took
their annual kids weekend to the Aztec
Adventure, Upton Warren, Bromsgrove and the
West Midlands Safari Park.
At Aztec, the kids were treated to some
kayaking and sailing as well as enjoying a thrill
seeking adventure on a speedboat.
There were also dry activities available as many
people conquered their fear of heights to climb
the 40 foot climbing wall as well as carefully
navigating the high ropes course and trying to
successfully solve the box puzzle.
Families came into close contact with monkeys,
giraffes and lions and also saw a sea lion show at
the safari park, a great day was had by all.
It was wonderful to see so many children
enjoying one another’s company, the activities and
families making lasting friendships.
The weekend was perhaps best summed up
by Zach, 9, who at the end of the weekend asked
whether they could do this again tomorrow.
Myaware received a total of £753.53 in kind
donations over the weekend and we would like
to thank everyone for making it such a fun and
enjoyable weekend and we hope to see you all
again next year.
Tel: 01332 290219 | Web: www.myaware.org | Email: [email protected]
SUPPORTING PEOPLE AFFECTED BY MYASTHENIA
2
EDITORIAL
An update from Ruth Ingledew
myaware CEO
S
ome of you may have already received
your new membership card and patient
passport and thank you to the many
people who have given us such positive
feedback, we are pleased that you are
finding them so useful. Over the course of
the year these will be sent to all members
on their annual renewal, so watch out for
the notice in the post.
For those of you who aren’t yet members of the
charity we would love you to join and have sent
you a membership form along with this copy of
the newsletter. It’s free to join and membership
means that you will continue to receive the
newsletter and be eligible for all the other services
that myaware provides. It also helps us to keep
an up to date membership list to meet our
obligations under the Data Protection Act.
We are very pleased that the Board of Trustees
have been able to commit funds to two new
research projects. The first is a collaborative
project between Professor Paul Maddison and Dr
Sui Wong to develop clinical scores and blood
tests in people who are newly
diagnosed with Ocular MG with
the aim of being able in future
to predict those who will
develop generalised MG and
those who won’t. The benefit
of this would be to tailor
specific treatments to
each individual on
the basis of
whether
or not
they
were
likely to
develop
generalised MG in the
future. This work will
recruit newly diagnosed
patients in Nottingham,
Birmingham, Oxford and
London. The second project
will be at Oxford under the
supervision of Professor
David Beeson, whose team
have pioneered the use of
Salbutamol with dramatic
results for people with
some of the Congenital Myasthenic Syndromes.
This new project will focus on laboratory work to
investigate possible new drug treatments to improve
transmission of signal at the nerve / muscle junction
for those with myasthenia.
Many of you have told us how difficult it can
be to access support for emotional and mood
issues. We are therefore delighted that we now
have a counselling service available to members.
This will be a confidential, telephone or Skype
service provided by a very experienced and
highly qualified counsellor. If you are interested
in accessing this new service, read on for more
details later in this newsletter.
I’m also very pleased to let you know that since
rebranding as myaware many more people have
contacted the charity and we have increased our
membership by 15%. This is great news because it
means that we can support more people affected
by myasthenia both at local support groups and
through the services available nationally.
It’s been a pleasure to meet up with so many
of you at our conferences already this year and
with more events in the pipeline (details later in
this newsletter) I look forward to catching up with
many more of you in the coming months.
Enjoy the summer!
Ruth Ingledew, myaware CEO
myaware NEVER discloses any personal details
F
ollowing the sad news about the death of a lady who had been inundated
with requests for donations from charities. We want to stress that myaware
NEVER discloses any personal details of charity members or donors to any other
organisation. We are extremely grateful to everyone who supports our work and do
not pass on data to third parties
news
Summer 2015myaware.org
EDITORIAL
3
On stress, being
stressed, and
becoming stressed out
T
o be alive is to be stressed. One
often hears people say they are
feeling stressed, or under stress or even
stressed out over this and that. As far as
psychologists are concerned, anything
we encounter, which requires a response
from us, is a potential stressor. It may be
something trivial, for which we have a
ready response, or something serious for
which we do not have a ready response,
such as physical or psychological trauma.
This follows the work of a Canadian physiologist
called Hans Selye who made two important
observations about stress in his famous book, ‘The
Stress of Life’.
Firstly, stressors, whether they are due to
physical trauma of psychological factors evoke
the same physiological response from the body,
something he termed the ‘General adaptation
syndrome’ more popularly known as the “flight
or fight” response. This involves the release of
three steroids into the blood stream, cortisol,
adrenalin and noradrenalin, which stimulate a
faster heart beat and the release of glucose into
the blood stream from the liver to provide instant
energy for either flight or fight. Common features
of stress include the constriction of blood
vessels, which increases blood pressure, plus
other physiological reactions such as, in extreme
conditions, incontinence.
What, it is a long time since you were that
stressed? Well good, but his second point was
that stressors are cumulative and so, if you are
required to cope with enough serious stressors
at any one time you are likely to feel stressed.
At the top of the list are obvious things like the
loss of a loved one, a road accident, moving
house, social isolation or being told we have a
life changing incurable disease, such as one of
the myasthenias. These sometimes come in twos
and threes so that we can experience high stress
levels from out of nowhere. This can lead us to
feel stressed out, unable to carry on and meet
even the simplest of life’s demands on us. This
is called ‘burn out’ when people in stressful jobs
ranging from bomb disposal to teaching or being
myaware.org a GP suddenly feel unable to continue, they just
can’t respond anymore.
The third factor is the duration of the stress
situation, the longer it goes on the more stressed
we become. Serious stressors are usually things
over which we feel we have no control which can
add to the stress. You will all have experienced the
stress of being told you have an incurable disease
called myasthenia, which would require you to
be on medication for the rest of your life and I
covered the importance of positive thinking in
dealing with that in my previous article. However
thinking positively is really a part of a set of things
you can do which will help you deal with life’s
stresses and so let us add them to your armoury.
Stress inoculation. This is a psychological
therapy process involving assessment of the type
of stress, the way the individual responds to that
stress followed by training in coping skills and
strategies which deal with the stressful situation.
The person is then given graded opportunities
to face similar lower level stressful situations and
practice their new skills.
This is easy to understand when one is
dealing with one off or occasional situations
like public speaking or dealing with door step
salesmen but what if you face the problem
day in and day out as with a diagnosis of
myasthenia? Let us take the model outlined
above and apply it to the problem.
Firstly, the nature of the stressor. Your illness
is not life threatening but it affects all aspects
of the persons life and therefore needs a global
approach to deal with it.
Secondly, new skills. The problem presented by
this particular stressor is one of continuous flexible
management. If you haven’t got it already then
flexibility is a skill you need to develop. Where
you used to plan to do this or that next day, now
you need to plan to do it, if you feel up to it. If
you can’t do something today then leave it until
the day when you are able to. Plan alternatives,
so if you wanted to go to Alton Towers and don’t
feel up it maybe you could go for a walk in a local
park, or just sit in the garden reading a good
book. In this way you will begin to see life again as
a number of enjoyable alternatives, not as a series
of closed doors.
Continued on page 4
Summer 2015
news
4
MEDICINE MATTERS
Continued from page 3
Thirdly, opportunities for practice. No problem
here. Everyday is another opportunity, provided
we learn from our mistakes. If you overdid things
yesterday or even the last few days and feel
washed out today, then you may need to limit
similar activity in future and perhaps include low
activity days to recover.
In this way your self confidence and self esteem
will rise as you become more skilful at reading
your own condition.
STRESS REDUCTION THROUGH SOCIAL
NETWORKING.
One of the easiest ways to learn new skills is to
pinch them from someone else and that applies to
attitudes as well as strategies. When it comes to
myasthenia, myaware meetings are great sources
of other’s experiences in managing the illness and
can be of help to carers as well as people with
myasthenia. Regional meetings with key medical
and social speakers will help you to put your
problems into perspective and can often steer you
towards good medical care. If you don’t attend
local or regional meetings, give them a try, at the
very least you will probably find that you can help
others as well as yourself.
RELAXATION
Relaxation is a skill which can be used as an
antidote to stress once you have learned how to
do it.
MYASTHENIA WITH ATTITUDE
If you put together what I have said previously
about positive thinking and the above comments
on stress management you come up with the idea
of positive attitude. Don’t deal with life’s stresses
in a reactive way, be proactive. Eliminate all the
“what ifs” about you illness, “What if I can’t go?”
What if I need to go into hospital?” etc. and
replace them with a single mantra “What I can
do, I do, everything else can wait!”. Say that to
yourself at least twenty times a day, every day
for a month and often thereafter and see what
happens. Then try some other mantras like the
myaware slogan, “I have Myasthenia, it doesn't
have me”. You will probably be familiar with this
method of positive autosuggestion, originally
credited to the French psychologist Émile Coué,
whose famous phrase, “Every day in every way,
I am getting better and better.” This produced
remarkable improvement in a variety of conditions.
Positive autosuggestion is not going to cure your
myasthenia, but it can help you to regain some of
your old joy in life.
John Rope, Clinical Psychologist and Chair
myaware Wiltshire
My first half marathon
I
n 2006, at the age of 25, I began to
feel that something wasn’t quite right.
I noticed that I sometimes couldn’t
take a sip from a cup and my smile
was intermittently “wonky”. It took
neurologists six months to diagnose
Myasthenia Gravis and two very long
years later I had a thymectomy.
In 2008, after
my operation,
my MG was at
its worst; it had
progressed
from affecting
the muscles
in my face
to impeding
my speech,
blurring my
vision and
exhausting my
news
arms and legs. It was indescribably frustrating.
I could no longer work and struggled to
control the never-ending symptoms. I set 2am
and 6am alarm calls to take Mestinon so I
would be strong enough to take my morning
medication. In a moment of defiance I set a
seemingly unrealistic goal “if I ever get better,
I’ll run a marathon.”
At the end of 2008, I gradually turned the
corner and began to slowly get my normal
life back. I have since tested my condition
with full time work, property renovation,
relocation, marriage(!), two (healthy)
pregnancies and full time motherhood. I now
manage my MG, to the extent that, in May
2015, I went exactly half way to achieving my
goal and ran my first half marathon – raising
money for myaware, of course.
If you want to know more about my recovery
or just need someone to talk to, you can email
me at [email protected]
Summer 2015myaware.org
NEWS
5
Myasthenia is not the same
for everyone
Having read the two moving articles in the mynews editorial, it
leaves me somewhat ashamed at my own experience with MG.
I
first started to notice I was having double
vision, but being someone not wanting to
waste the doctor’s time, I put it down to
tired eyes. However as the double vision
became more of a problem, and I was due
an eye test, I visited my local opticians.
Fortunately the optometrist that checked
my eyes thought there was a more serious
problem and referred me to the eye clinic
at the local hospital.
My good fortune continued at the clinic as
the consultant who checked my eyes decided
after consulting with his senior colleague that
it was not an eye problem but could be MG.
They raised an internal request for me to see the
neurologist.
It was at this point that I had to stop driving
and inform the DVLA. This was one of the
frustrating points as it was a lengthy period after
my condition improved before the DVLA made
the decision that I could have my licence back.
I received an appointment from the neurology
department about three weeks later and at this
consultation I was diagnosed with Ocular MG
and prescribed with Pyridostigmine and other
associated medication to counter the possible
side effects.
I was on the
medication for
about three weeks
when the MG
moved to my neck.
This is when I had
the odd looks as
I could not keep
my neck upright.
However, shortly
after this the
Pyridostigmine
started to take
effect and my
symptoms
disappeared.
Over the next year I reduced the dosage of
Pyridostigmine and moved onto Azathioprine. I
was eventually able to stop the Pyridostigmine
completely and now take a daily dose of
150mg of Azathioprine. All signs of MG have
disappeared and I am living a normal life except
for a 3 monthly blood test.
I am sending this as I hope, it will give those
newly diagnosed with MG the knowledge that it
is not the same for everyone.
Derek McCalden
Welcome
A big welcome to Christopher Albas-Martin who joins
myaware as the Communications Officer. Chris will be taking
over the day to day management of the website as well as the newsletter, social
media and general awareness. I am sure that you will all join me in welcoming him
and that he has a very long and successful career at myaware.
New myaware Counsellor
The myaware trustees have responded to demand from members and we
are pleased to tell you that we have appointed Robert Heaven as our new
counsellor. He will provide a completely confidential, free of charge telephone
and skype counselling service for myaware members. Robert has an extensive
background in counselling, having been practising since 1998 and is an
accredited member of the British Association of Counselling and Psychotherapy.
Robert has a keen interest in life transitions, stress, anxiety, depression, bereavement and loss.
He also has experience of working with people with long-term conditions and their carers. If you
feel that counselling could help you, call 01332 290219 or email [email protected].
myaware.org Summer 2015
news
6
ADVICE
myaware Social & Welfare Service
Other than the ‘formal benefits’ such as; Disability Living Allowance, Attendance
Allowance, Blue Badges etc. We often forget the little things that help to support people
with long term health issues
There may be a moderate charge for some of
the services below:
SAFETY IN THE HOME
 You can request your local fire brigade to
visit your home. They can advise you of the
best possible action and escape route should
an emergency occur. They will also check fire
alarms and fit new ones if necessary.
 A 24 hour medical emergency alarm system
can be fitted in your house. The systems are
monitored and simple to operate.
 You can contact your utility company and
ask them to register you on their disabled
priority list. You will be required to complete
a form and have it signed by your GP
OUT AND ABOUT
 You can apply via your local council for a
RADAR key. This key will give you access to
disabled toilet facilities.
 Discounts are available for some leisure
venues such as cinemas and theatres.
Contact the venue directly to find out if there
are discounts.
 Make sure you always carry your
myaware passport when out, so should
something occur then appropriate treatment
can be given.
If you have a Social Services Care Plan or an
Occupational Therapist then they can help you
access specialist equipment. If you pay for this
yourself it is often possible to purchase without
paying VAT.
You can apply for a Disabled Facilities
Grant (DFG) from your local council if you
need to make changes to your home. A
DFG will not affect any benefits that you are
currently getting.
PRESCRIPTIONS AND SHOPPING
You may be entitled to free prescriptions. If
you currently do not receive free prescriptions,
contact your GP or chemist for information on
how to apply.
Many of the main shops and some more
specialist retailers offer home delivery, so if
you have access to the internet consider using
online order and delivery.
Remember our benefits service offers free
advice in a confidential environment, we aim
to answer all enquiries within 36 hours. The
service is available to all full members of
myaware.
To contact us either email benefits@
myaware.org or telephone head office
at Derby on
01332 290219.
To help us help
you please
include your
name, address,
myaware
membership
number, contact
number and
nature of your
enquiry.
Steve
Bradshaw,
Summer 2015
Dear Steve,
ications for the
gave me in October 2014 relating to appl
I would like to thank you for the advice you
is.
leaflets relating to Myasthenia Grav
Blue Badge Scheme and also sending me
ssment with a
and I was required to attend a mobility asse
I applied for a Blue Badge in October 2014
notes in my
e
mad
had
I
day,
nt
ingham. Before the assessme
qualified Occupational Therapist in Birm
including the
on
mati
infor
the
All
the bad days affected by MG.
and
d
goo
the
ths,
mon
6
last
the
for
diary
more information to the assessor.
leaflets were kept handy for me to forward
ing. I used a walking
a bad day and I was having difficulty in walk
The day I attended my assessment, it was
aware of my MG
MG leaflets to the assessors and made them
stick throughout the day. I also handed my
glad to look at it.
ledge of our condition and the assessor was
condition, which gave them medical know
application
ingham City Council that my Blue Badge
After 7 days, I received a letter from Birm
was successful.
news
Summer 2015myaware.org
EVENT NEWS
7
London Marathon 2015
Huge thanks to everyone in our team of runners in this year’s London Marathon which took
place on Sunday April 26th. The team raised a fantastic £13,500 to help keep myaware
running! Here are some comments and pictures of a few of our runners after the event:What a great day – I wouldn't have missed it for the world and a day I will
remember for ever!
Sue Jones (pictured right)
I had a wonderful day! Thank you so much for giving me the opportunity
to run. Seeing as my fiancé has myasthenia gravis it has been very good
to raise money for such a worthy cause.
Adam Glekin
I would say it was one of the best experiences of my life. I completed the
marathon in 5.18, which I think for a first marathon was pretty good. I am
a little stiff today, but nothing I wasn't expecting.
Vicky Aldred
I had a great day! Very tiring, of course, but a lot of fun. Achy legs and
I'm STILL yet to have a celebratory beer, but I'd happily do it all again for
the same cause!
Jack Hart (pictured left)
I had a great day completing the course in
4 hours 11 minutes. To think I could have
completed the course 8 years ago would have
seemed unimaginable. Thank you for allowing me
to run for my charity it was a huge honour! Also
thanks for your support and the card you sent.
Steve Upham (pictured right)
If you are interested in running for myaware in next year’s London
Marathon please let us know now by calling Steve on 01323 404066
or e-mail: [email protected]
myaware CEO takes the plunge
T
hank you to the many of you for
sponsoring my recent Tyne Bridge
Zip Slide. It was really generous of you. I
am happy to say that I did complete this
challenge and here is the evidence...
of myasthenia and to researching for better
treatments and ultimately for a cure.
Once again, many thanks for your very
generous support of myaware.
On the day of the slide it was really windy.
Although I’m not generally nervous of heights,
climbing up a wobbly ladder in high winds and
clambering over the parapet of the bridge was
quite scary. It was certainly much further down to
the Tyne than I expected but once I’d stepped
off the bridge it was great fun and I was back on
the quayside in a matter of seconds!
In the end I raised a total of £1,333.14
for myaware . We will put the money raised
towards our work of support for those who are
affected by myasthenia, to raising awareness
myaware.org Summer 2015
news
8
OBITUARIES
Obituaries
Fearghal Murphy
Fearghal leaves behind his sons Martin and
Damien, daughters in-law Niamh and Nicole
and his grandchildren Isaac and Alannah. Our
thoughts are with Fearghal’s family and many
friends at this sad time.
Clare Foley, PR & Fundraising Coordinator
Tom Young
his wife Sarah were both very much missed
from our recent meetings. Our thoughts and
prayers go to Sarah and her family.
Sheree Brown,
Belfast Support Group Secretary
Andrew Moore
cards in aid of myaware. Andrew was
always ready to give helpful advice and
assistance to the group as well as being
the auditor of the group accounts. He will
be sadly missed and our condolences go
to Monica and her family.
It was with great shock and sadness we learned
of the passing of Fearghal Murphy of Galway
in April. Fearghal, who was active with the
Galway support group, served as an officer for
a number of years and will be greatly missed.
We are sad to inform members that our long
standing member of the Belfast group, Mr Tom
Young passed away on Sunday 24th May 2015.
Tom had been unwell for some time. Tom and
The Hampshire group are sad to announce
the passing of Andrew Moore on 3rd April
2015. Andrew was an active member of the
group. Each Christmas he manned a stall
at the Chandlers Ford Methodist Church
Card Fair. His wife Monica makes beautiful
Joan Finney, Hampshire Group Secretary
Sarah Jupp
touring Las Vegas. During the last eighteen
months she fought bravely against successive
infections but remained cheerful and positive,
inspiring all who knew her. She was a wonderful
daughter, sister and auntie and a fantastic friend.
She taught us to make the most of every
minute and live life to the full. May she Rest
in Peace.
Laurence Gough, Croydon and South East
Support Group
Thomas Meirion Griffiths
eldest granddaughter Tara is holding the photo
of her Grandfather or ‘Dad’ as he was known,
with Anne, his widow on her left, and Nicola,
his daughter on her right. Extreme left is Paula,
his niece. Paula is also Manager of the restaurant
at the Centre
– a favourite
place for our
lunches.
Sandy
Mather,
myaware
South Wales
Croydon group is very sad to report the death
of Sarah Jupp at the age of only 39. Sarah was
diagnosed with myasthenia 13 years ago with
a malignant thymoma which was removed but
returned five years later. During a course of
chemotherapy she drew up a wish list of things
to do including seeing grizzly and brown bears
in Canada, seeing Knights Inlet off Vancouver
Island, flying down the Grand Canyon and
The members of the South West Wales
Support Group were very sad to learn of the
death of one of our much loved members.
Meirion passed away on Wednesday 25th
February, aged just 72. In his youth he was
a medal winning gymnast but in later life he
was diagnosed with Myasthenia. Despite this
his cheerfulness and sense of humour always
showed through. Rest in peace Meirion we will
miss you and our love goes to Anne, his widow
and her family.
Photo shows: Our Memoriam Lunch for Meirion
at the Pontardulais Garden Centre, Swansea. His
news
Summer 2015myaware.org
EVENT NEWS
9
Ocular Myasthenia
Information Day
O
n June 26th 2015 myaware hosted this year’s
Ocular Myasthenia Information Day at the
Macdonald Burlington Hotel in Birmingham.
Members travelled from far and wide for the event –
the furthest travelling from Dublin! Thanks to funding
from Awards for All (Big Lottery Fund), we were able to
provide a free event with a complimentary lunch and
excellent speakers.
Ken Pullum (pictured right) enlightened us all
about scleral lenses and the benefits to patients with
myasthenia, while Dr. Sui Wong (pictured right), our
keynote speaker from Moorfields Eye Hospital, gave a
fantastic overview of ocular myasthenia and the latest
research she is undertaking to find out why in some
cases ocular myasthenia develops into generalised MG.
We had an opportunity to showcase our new
information booklets (see below) within our delegate
packs and these were of particular interest to local
optometrists who attended the event.
We were also lucky enough to have stalls manned by Action for Blind People, Unique Insurance
and the Orthoptists Team from Moorfields Eye Hospital. Our raffle, including two hampers
donated by one of our supporters, raised £120
for the charity (a bottle of whiskey being the
most coveted prize) and despite the initial
technical issues all the feedback from the event
has been positive and will help further improve
our future events.
Thank you to all those who attended
and supported the event, helping to make it
a success.
myaware.org Summer 2015
news
10 REGIONAL CONFERENCES
Isle of Wight Regional Conference
S
aturday 11 April 2015 dawned wet and
cloudy and didn’t look too good for the
first ever Regional Conference to be held on
the island. However, as members of myaware
arrived by ferry, the clouds disappeared and
the sun shone on what was going to be an
excellent weekend all round. In all, 35 people
attended the conference at the Lakeside Park
Hotel, Wootton. 22 of whom had varying forms
of Myasthenia.
Following a buffet lunch, Steve Saunders,
Regional Organiser for South East, London &
East of England opened the proceedings, he
was followed by Dr Stuart Viegas, Consultant
Neurologist (pictured right in the photo) based at
Charing Cross Hospital who gave us an update
on the history of Myasthenia; first identified
in 1672 by Thomas Willis; causes and current
treatments involved in all Myasthenia conditions;
the research programme currently being carried
out – thanks to a high percentage of funding
being received from myaware and concluded
with a general Q&A session.
Steve Bradshaw, myaware Benefits Officer
(pictured left in the photo) gave a very useful
talk on current benefits which may be available,
together with constructive advice and guidelines
on application and procedures. This too was
followed by a Q&A session plus members’
experiences of how helpful Steve had been in their
particular circumstances.
Olivia Hamilton & Gill Kennett gave a
presentation on the ‘My Life A Full Life’ scheme,
whereby a person with a long-term medical
condition could become involved in their selfcare, management and social wellbeing; together
with ideas as how best this could be achieved
with local contact information applicable to all
attendees being given out. In addition they gave
Members at Osbourne House
news
Photo courtesy of Isle of Wight County Press
details of the newly awarded ‘Vanguard Project’
supported by NHS England.
The last speaker of the afternoon was Ruth
Ingledew, our own CEO (pictured centre), who
gave an update on the charity and how it has
developed over the years, (2016 myaware will be
celebrating our 40th birthday); the rebranding
of the charity, which now encompasses more
of the known Myasthenia conditions and the
exciting plans which will develop over the next
year including a revamp of all the publications,
website and Facebook. Ruth concluded her talk
by thanking all the members and volunteers who
helped the charity.
Saturday concluded with dinner served in the
Oyster Room at Lakeside. Due to circumstances
beyond our control, Roger & I were unable to
stay after all, however I did hear that the Treacle
Pudding was excellent!!
On Sunday the last event was a social trip
to Queen Victoria’s ‘little place by the sea’ –
Osborne House, via Whippingham Church which
the royal family used to attend. We were allowed
to wander through Osborne House, (via the
special route!) at our leisure or sit in the beautiful
grounds chatting. It was a great way of mixing
and talking about our experiences and finishing
an excellent regional conference.
Thanks to you all for travelling from North
Island to our little ‘garden isle’ We enjoyed
your company and would also like to thank the
speakers, Regional Organiser Steve Saunders
and all the staff at myaware in Derby for their
help and of course the ‘Big Lottery’ for the
financial support!.
Lynne Pitcher, Publicity Officer
Summer 2015myaware.org
REGIONAL CONFERENCES 11
Regional Conference Dates
M
yaware regional conferences and events are a big part of the year for the charity. They
allow people from across a region to meet up socially, enjoy a relaxing lunch and gain
invaluable information about myasthenia and living with their condition. National events
open to members include the Young Generation Weekend and the LEMS section of the
London and East of England & LEMS conference.
For many, regional conferences are a great opportunity to meet others affected by myasthenia for
the first time and gain valuable support by exchanging notes with those who have been living with
their condition for years. Myaware conferences are free of charge to members and their immediate
families or partners.
If you are interested in coming along to one of these events please contact your local Regional
Organiser, the head office in Derby, or see our web site for more details.
North West & North Wales.................................Chester...................................Sunday 13th September
Northern Ireland..................................................Portadown........................... Monday 14th September
North.....................................................................Yorkshire................................Sunday 27th September
South West...........................................................Newquay.................................... Saturday 3rd October
Midlands...............................................................Lincolnshire.................................Sunday 18th October
Scotland................................................................Perth......................................... Saturday 24th October
London and East of England & LEMS...............Colchester............................ Saturday 14th November
Ireland...................................................................tbc................................................................................ tbc
North.....................................................................Cumbria...................................................................... tbc
Young Generation weekend...............................Birmingham............................................................... tbc
South Wales.........................................................tbc................................................................................ tbc
Support Groups in your area
MYAWARE NORTH WEST & WALES
SUPPORT GROUPS
Following our ‘Big Lottery Wales’ grant, we were delighted
to see so many people at the first meeting to be held
outside of our usual Abergele venue. On Sunday June 7th
2015 we invited local members to attend a support group
meeting at Powis Castle, Welshpool. We were extremely
lucky to have Dr Geoff Keir from the Neuro-immunology
lab at the Walton Centre in Liverpool, to deliver a
presentation on the history of myasthenia. Without the
support of ‘Big Lottery Wales’ we wouldn’t have been able
to meet so many of our members who live in some of the
more remote parts of Wales.
In April this year we moved our Merseyside support
group meetings to a new venue at the Liverpool Central
Library. This venue, like our previous venue, is located in
the city centre and is easy to access via public transport
and has full disabled access and facilities. Our future
meetings will all be held here and we really hope that
you can come along and join us to meet other people
living with myasthenia and their relatives.
Sarah Sanders, Regional Organiser
myaware.org Summer 2015
news
12 SUPPORT GROUPS
Support groups in your area
myaware Dumfries and Galloway
Support Group is the most recent group to
be formed in Scotland.
We met recently in Gardenwise Plant and
Garden Centre, Dumfries. Everyone enjoyed
a lovely lunch and most importantly shared
experiences to help, support and encourage
each other. We also enjoyed birthday cake
that was provided by Marie Renicks for Cathy
Coutts, who recently celebrated her 90th
Birthday. Cathy very generously raised £250
from family birthday donations.
Jenny had Myasthenia and sadly passed
away last year on the 17th August. She had
been an active member of the Hampshire
group since her diagnosis.
The choir concert took place in St Peter’s
Church Petersfield on Wednesday 3rd June
and was a great success with a full audience.
Unfortunately I could not be there but our
Regional Organiser Steve Saunders gave a
short talk about Myasthenia Gravis before the
concert interval, and donations were received
at the end of the concert.
I am pleased to announce that £1,171.67
was collected for myaware Hampshire group.
Joan Finney, Secretary
myaware Lincolnshire — Farewell Maria
The next meeting will take place on
Saturday 17th October 2015.
Jack Fleming – Chairman
myaware Strathclyde is delighted and
grateful for the funding received from
Awards for All Scotland, part of The Big
Lottery. Strathclyde is a large geographical
area therefore the grant will enable the
group to have meetings in several locations,
providing support for even more members.
The £5,350 received will also provide an
enjoyable Christmas Lunch plus banners and
literature for awareness.
Alex Eadie - Chairman
myaware Hampshire
I was delighted to receive a phone call from
a member of the Petersfield Community
Choir to say that they were proposing to
hold a concert in memory of their choir
member Jenny Hart and that the proceeds
would go to myaware.
news
After volunteering
as the
Lincolnshire group
Chairperson for
many years, and
doing an excellent
job at it, Maria
has finally decided
to take some welldeserved time out
and put herself
first, resigning
from her role.
We are all sad
to see Maria
stand down,
especially after
all of the support she has provided to many
newly-diagnosed people with myasthenia.
However, Maria is still happy to continue
with the ‘welfare’ aspect of her role and will
be attending our group meetings as usual
to encourage and support local people with
myasthenia.
I know that she has been an inspiration to
many, and her positive and humorous outlook
on myasthenia has helped members of the
group through the tough times. Thank you
Maria for all you have done to raise awareness,
provide help and fundraise within Lincolnshire
and enjoy the well-earned time you now have
available for yourself!
Sarah Hindley, Regional Organiser
Summer 2015myaware.org
SUPPORT GROUPS 13
myaware Young
Generation
A
re you aged 18-45? If so join us at
young generation! We have regular
meetings which are informal, usually
involving a drink at a pub and a chat. Our
national group usually meets in London, but
this year we will be taking the group ‘on
tour’ around various parts of the country.
Recently we held a meeting in Kent and
more meetings are planned throughout the
UK. Visit our Facebook page to keep upto-date with all the latest meetings – www.
facebook.com/myawareyounggen.
Pizza Making
– In March we
tried something
a little different
and held a pizza
making session
at Pizza Express.
It was fun,
although I don’t
think any of us will be attempting to become
proper pizza chefs any time soon! Thanks to all
those who came along.
Jon Rio and Jen Cuthbert – Congratulations
to Jon and Jen, two of our young generation
members, who competed in the Birmingham
10k and are running in the Great Birmingham
Run for myaware. They are looking to raise
£500 – good luck!
Pub Quiz – Our young generation members
from the Midlands recently held a Pub Quiz
in Birmingham to raise funds and awareness.
Although we were a bit low on numbers we
still managed to raise £88 so thank you to all
participants.
Weekend Away – This year’s Weekend Away
will be held in Birmingham, most probably
around October or November. We are close to
receiving full-funding for this event – watch this
space for further details.
Blogs – Two of our young generation members
have very interesting blogs which discuss their
myasthenia, please have a read and comment:
https://365daysofmyasthenia.wordpress.com/
https://amymillard79.wordpress.com/
Adam Glekin – Huge thanks to Adam who took
part in the London Marathon and raised £1,750!
This is a fantastic achievement and we are
grateful for your help.
If you would like to get involved in young
generation, do some fundraising, or have
any questions, please contact Sarah – sarah.
[email protected].
M
your regional organiser doesn’t have her
camera!!!!.
Just for Laughs!!!
anaging
your
myasthenia – tip
No. 1. Always
listen to your
body and if
you feel in
need of a nap
then do have
one (see photo
right) just make
sure your wife
doesn’t have
a “for sale”
sign handy and
myaware.org A
s she sat by him, he whispered, eyes
full of tears, "You know what? You have
been with me through all the bad times.
When I got fired, you were there to support
me. When my business failed, you were
there. When I got shot, you were by my side.
When we lost the house, you stayed right
here. When my health started failing, you
were still by my side... You know what?"
"What dear," she gently asked, smiling as
her heart began to fill with warmth.
"I think you're bad luck....."
Summer 2015
news
14 AROUND THE REGIONS
AROUND THE REGIONS
Northern Ireland
Jan Beaumont
Tel: 028 9146 2844
[email protected]
The Belfast Marathon
Doug Barrett-Ferris from
Belfast, ran in the Belfast
Marathon on 4th May 2015
and raised just over £400
for myaware. Doug ran the
marathon on behalf of his mum
Claire, who has myasthenia.
Claire is extremely proud of her son who ran
despite his many hockey injuries!
Jeff Brown’s Soapbox Summer
Jeff Brown and his family have an exciting summer
planned – they have built a homemade ‘Soapbox’
and are planning to attend races all over Ireland
this summer. Jeff would be very grateful for any
support to this wonderful appeal. His Just Giving
page has already raised over £1,500 for myaware
and myaware Kids! To support the Brown’s in this
exciting venture please text JFRY55 and your
North
Linda McDonald
Tel: 01325 308180
[email protected]
Thank you to all these great
supporters; Chris Chappell,
Juan Baggiano, Gav Watts,
Laura Mizzi, Claire Day (photo
right), Hayley Butterworth,
Jodi Johnston, Elizabeth
Baggiano, David Lees, Lisa
Marie Merriman, Katrina Bell,
Bobby Solly, Hannah Solly, Terence Catcheside,
Chris Swinden and our CEO Ruth Ingledew, who
have challenged themselves and taken part in runs,
swims and Zip Slides across the north region to
raise much needed funds for myaware.
Special thanks go to Lynne Richardson in
Northallerton who has been fundraising
for myaware following the diagnosis of her
granddaughter, Katelyn, with myasthenia.
Lynne has organised a promoted raffle, a cake
sale at work, quiz and music nights in the local
news
donation of £1, £2,
£5 or £10 to 70070.
Or you can donate on
Jeff’s Just Giving page
– search for Soapbox
Summer. Go the Brown
family!!!
Carnalea Golf Club Lady Captain's Charity
Presentation
Mrs Margaret Bailie, Ladies Captain of Carnalea
Golf Club 2014/15 presented a cheque for £8,800
to Jan Beaumont, Regional Organiser of myaware
in Northern Ireland. This wonderful donation was
raised from a variety of events held throughout the
year at the club with the support of the committee
and members.
Save the Date
The Myasthenia Information Day will be held on
Monday 14th September from 11am - 4pm, at
the Seagoe Hotel in Portadown. We will have four
speakers who will be of great interest to us all and
lunch will be provided. Letters will be sent out to all
members, and the agenda will be confirmed nearer
the time. The funding for the event has kindly been
donated by the Big Lottery Fund.
pubs. Lynne has been on local radio and in the
newspaper and has received support from work
colleagues, local businesses, family and friends.
With two events still to take place Lynne has
already raised more than £3,000. Katelyn’s mum,
Hayley Butterworth, is also
fundraising and is taking part
with her friend Jodie Johnson
in the Leeds 10k. Hayley’s
brother, Gareth is taking part
in 10 races of 5 and 10k, and
a half marathon. Lynne said
at the start of her fundraising,
‘We've never really bothered
with charity, ashamed to say, but when it's your
own, it's different. We're really keen to do as much
as we can.’ Thank you Lynne, Hayley and Gareth for
your amazing support.
The North East & Cumbria Regional Conference
held in Durham in June was attended by more than
70 people, many for the first time. It was good to
see so many new faces and we hope you found the
conference helpful and interesting. The Yorkshire
Conference will be on the 27th September.
Summer 2015myaware.org
AROUND THE REGIONS 15
North West & Wales
Midlands
Tel: 07804 775554
Tel: 07523 096930
Sarah Sanders
[email protected]
Following their
very successful
coffee morning
at Padgate
Methodist
Church, Lynne
and Nev Holt
and their niece
Amanda Davies
presented us
with a cheque for
£1,065. We would
like to thank the
Holt family and
everyone who
supported them
and attended the
event for their continued support of myaware.
This year our regional conference is ‘Big
Lottery’ funded and will be held just outside
Chester at St David’s Hotel, Ewloe on Sunday 13th
September. Invites will be sent out in the post to
members in the North West and North Wales.
Places are limited so please return your RSVP asap
to secure your place at the conference.
Would you like to take part in an unforgetable
fundraising event in aid of myaware? We have
places available for the Manchester Trafford
Centre Abseil on 19th and 20th September.
Registration is free if you can commit to raising
a minimum of £125. Contact us today for more
information on how to register.
Sarah Hindley
[email protected]
Huge thanks to all those
who have taken part
in events including the
Chester Half Marathon
Matt, Ben and Natalie
(Ben and Natalie pictured
right) and our World
Record Attempt Skydive in
Nottingham (photos to be
included in Autumn mynews).
Birmingham Cough Assist Machine On 15th
April our Birmingham & District group (pictured
right) presented
a Cough Assist
Machine to
the Alexandra
Hospital in
Redditch, who
were really
grateful. It has
already been
used to help a
small child. Big thanks especially goes to Bill for all
the effort he put into fundraising for the machine.
Tanya Cornford has raised a fantastic £2,500 by
taking part in the London to Brighton Challenge
in May. She completed the race in just over 32
hours – amazing! You may have spotted her in the
Newark Advertiser.
Matt Egginton has also been busy raising funds
and awareness through his Coast to Coast Cycle
Ride, which raised nearly £1,000. Thank you to all
our fundraisers for your brilliant efforts as every
penny counts.
In the last
newsletter I
mentioned we
had received
£1,106.24
from the Union
of Catholic
Mothers at the
Sacred Heart Church, Bilton – here is the photo
(right) to prove it! Big thanks again to all the ladies
for their fundraising.
Lincolnshire Conference 2015 – this is to be
held on 18th October at Hemswell Court and Dr.
Maddison has been confirmed as our Medical
Speaker. More details to follow.
myaware.org Summer 2015
news
16 AROUND THE REGIONS
Ireland
Clare Foley
Tel: 01-4475295
[email protected]
Ronnie Whelan’s Annual Walk for myaware
Ireland and Liverpool FC Soccer ace, Ronnie
Whelan has once again pulled on his walking shoes
for myaware and walked 105 miles from Dublin
to Waterford in June. Ronnie, whose daughter
Elizabeth was diagnosed with MG in her teens, has
been clocking up the miles since 2010, raising funds
and awareness for myaware and myasthenia.
donating any amount, however small to justgiving.
com/ronniewhelan
Myasthenia Awareness Month launched in Ireland
In June 2015 myaware Ireland launched the
Myasthenia Awareness Month with an awareness
campaign mailing to GPs, Neurology Departments,
Hospitals, Libraries, Opticians and Patient Groups.
We also invited members to hold local events in a
bid to start the conversation about myasthenia.
Patron Ronnie Whelan said, “It’s really about
spreading the word about the condition and
making sure people get the best treatment as
quickly as possible”.
We have already seen an increase in requests for more
information from medical professionals and increased
contact from people who have been diagnosed or are
awaiting diagnosis – this is all great news as it means
we’re reaching more and more people!
Going to Hell and Back again for myaware! Bray,
Co Wicklow – September 12th 2015
Following on from our brave teams who took part
in June - if you or someone you know really wants
a challenge then why not sign up for Ireland’s No 1
challenge course? As seen on Ireland’s
This year Ronnie was joined by Agnes Matusiak, a
mum of 2 living with myasthenia. Due to her condition,
Agnes had to give up work so the challenge of walking
over 100 miles was a big one and at the end, an
emotional Agnes was joined by partner Sylwester and
daughters Laura and Kayla who were full of praise for
this brave and strong woman.
You can see more photos at facebook.com/
ronniewhelanswalk and can still support by
news
Fittest Family, Hell & Back is the ultimate obstacle
course – Hell & Back Titan is a mucky, messy 7k
course which will test even the toughest person!
Register and join Team myaware – places will be
strictly limited as the event is already selling out.
Learn more or register at mga-charity.ie/hell-and-back
Support Group Meetings
Have myasthenia or recently diagnosed? Would
you like to meet others who know what you’re
living with? We hold informal meetings around
Ireland throughout the year. If you’re interested in
attending this group – get in touch, we’d love to
see you! For Irish support groups in your area visit
www.mga-charity.ie/events
Summer 2015myaware.org
AROUND THE REGIONS 17
South West
Rita Goldthorp
Tel: 01980 626062
[email protected]
We have been very fortunate to receive some good
grants to help our support groups offer interesting
social and educational events for our members.
Awards for All (Big Lottery) have given grants to
Wiltshire and Cornwall and both will be holding
regional meetings for their areas. The Red Nose Day
awards were gratefully received by Cornwall and
South Devon to support carers in their area with hot
meals during the winter months.
quick to duck!!
John Mason’s strawberry tea took place on
6th June
john said ‘’this was my 10th and last Strawberry Tea
and was the very best one producing £1,050 for
myaware. It all started in 2004, producing £22.50,
and the next year it was cancelled. My treasurer
tells me that the total overall is £6,215.44. I have
thoroughly enjoyed the whole process but it does
take it's toll, both Beryl and I had a job to walk the
next day because of the mental and physical effort
put in. The main reason for stopping is because next
year I will be 80 and my family have put their foot
down and told me that is enough, bless them’’.
The East Devon and South Devon groups have
joined forces on a few occasions to enjoy meetings
and meals together. In April they had ‘a taste of
Spain’ with a range of tasty dishes to tuck in to
cooked to perfection by Steve Bradshaw.
Folke Golf Club in Alweston Dorset continues
to support their local group by giving them a free
meeting room and providing excellent catering
at affordable rates. A bit of fun was had when the
group tried their hand at golf on the range – be
South East
Steve Saunders
Tel: 01323 404066
[email protected]
Our participants in the
abseil at the Orbit in
London’s QE Olympic Park
were treated to fantastic
views of the London skyline
as they descended the
350 foot high structure.
What’s more, they have
raised very close to £10,000
for our charity by bravely
undertaking this new challenge. Well done and
enormous thanks to you all!
Our Thanet support group was delighted to receive a
donation of £2,608.21 from Union Lodge 127, Margate
Freemasons as a result of a fundraising dinner held last
November. Our thanks to all concerned for helping us
to support our members on a local basis in Thanet.
At the AGM of the South Essex Support Group the
Chairman was pleased to receive a donation of £250
myaware.org from 10 year old Tom
Henessey who, along with
other pupils at his school, had
made and sold cakes as part
of a fundraising project. The
pupils had decided to raise
funds for myaware as Tom’s
grandmother has MG. Tom
is pictured with Paul Gardner,
Chairman of the South Essex Support Group, shortly
after the donation was made.
Another young supporter,
Sergio Navarro from Fulham
in London, decided to take
on the challenge of doing
a sponsored silence at his
school as part of his Duke of
Edinburgh Bronze Award and
came up with an amazing
£881.05. Sergio chose
myaware to benefit as his mum has myasthenia. Well
done and thank you to Tom and Sergio!
Forthcoming events: Thames Bridges Trek on
12/13th September 2015 a distance of 20K and
the Great South Run on Sunday 25th October, a
distance of 10 miles in Portsmouth.
Summer 2015
news
18 NEWS
Scotland
Lynn Stewart
Tel: 01698 261752
[email protected]
Golden Charter Takes
A Casual Approach To
Charity Fundraising Staff
at Bearsden-based funeral
firm Golden Charter have
turned dressing down into
an opportunity to raise
cash for good causes. Thanks to generous staff
members, the company raised a total of £314.78
for myaware. Chief Executive Ronnie Wayte
presented the cheque to Lynn Stewart.
Life with Art
Dignitary Guest Bailie
Philip Braat of The Lord
Provost’s Office, Glasgow
City Council, was a very
welcome guest at Life
with Art Exhibition in
Glasgow. He was very interested to find out about
Myasthenia and also commented on the wonderful
artwork on display.
IKEA Edinburgh Two weekends in June with wind,
rain, sunshine and wonderful volunteers raised the
fantastic total of £460.26. Thanks to IKEA and all
those who helped.
Onesie Walk with a difference! Last year saw a
good turnout and great fundraising for myaware
Scotland Onesie Walk. We are doing it again this
year but due to the very changeable weather in
Scotland onesies are optional. You can wear a
onesie or a myaware Tee Shirt. On Saturday 15th
August, a scenic three mile walk in Pollok Country
Park, suitable for prams, wheelchairs and dogs and
lunch at the finish!
Time for Tee! Friday
28th August at Deer Park
Golf and Country Club,
Livingston. Breakfast,
round of golf, lunch
plus Challenge the
Professional, all for only
£50 per person. Kelsey MacDonald, professional
Golfer who is participating in Ladies European Tour
2015 will be there to challenge you! Take up the
challenge of nearest the pin at the 10th hole to see
if you can beat the professional!
Myaware Scottish Conference 2015, The Station
Hotel Perth on Saturday 24th October.
news
Travel insurance that’s
as individual as you
L
aurna, a member of Myaware, is writing an
online blog and recently mentioned Unique...
‘Last year I used Unique travel insurance to cover
my trip. I was terrified that they would say they
couldn’t cover me. However, the woman I spoke to
reassured me that I was covered for my walk.
Having checked again, its price remains roughly
the same for this year – with a gold or platinum
option available. For research purposes, I decided
to check out what else was available. Unique was
still the best option in terms of price so I’ll get
myself booked up with them shortly. Once I do
that, I’ll know the practicals are out of the way and I
can start counting down the days for French beach
time.’
It’s always great to hear from a happy customer.
It’s not worth the risk of heading on holiday without
travel insurance in place - does the policy cover
myasthenia, and all medical conditions, disabilities,
allergies, everything declared, or are there
exclusions to this?
Unique has an established partnership with
myaware, giving you access to a travel insurance
policy that covers people living with all types of
myasthenia and any other medical conditions and
disabilities, their families and friends travelling with
them, and supporters of myaware.
We offer a personal service, where you won’t
be rushed to complete, and our online quote and
buy website includes a 5% discount when you
purchase* and ‘Web Chat’ – a link to our team to
assist if there’s something you’re unsure of.
For every policy sold, we make a donation
to myaware – which will go towards continuing
their work for the thousands of people living with
myasthenia today**.
For more information or a no obligation
quotation, please call the Unique team on 0800
519 0750, email [email protected] or visit
www.myaware.org
Subject to underwriting terms and conditions, please see policy
wording at myaware.org
*discount may be withdrawn or subject to change at any time
**For every travel, home and motor insurance policy sold,
Unique donates 33.3% (20% for life assurance, new business
only) of the commission that it retains from that sale to Myaware.
Myasthenia Gravis Association (now known as Myaware) is an
Introducer Appointed Representative of Heath Lambert Limited.
Unique is a trading name of Heath Lambert Limited, which is
authorised and regulated by the Financial Conduct Authority.
Registered Office: The Walbrook Building, 25 Walbrook, London
EC4N 8AW. Registered in England and Wales. Company
Number: 1199129. www.ajginternational.com
Summer 2015myaware.org
NEWS 19
Ways you can help
in 2015
Birthday/Anniversary
Lottery Draw Winners
Spring Draw 2015
1st Name Prize Value
Mr D Lees, Northumberland
£1,000
2nd Mrs F Day, Bedford
3rd
£350
Mrs B Henry, Shetland
£150
McPherson Draw Winners
Do you have a special birthday or
anniversary this year! If so why not ask
for donations to your charity instead
of presents.
Hold a
Dinner
Party
Host your
own dinner
party have your family friends over.
Cook them a meal and ask them to
make a Donation to the charity.
Draw February 2015
1st
2nd
3rd
Miss M Baker, Oxford
£67.50
Mrs S Ormesher, Wigan
£40.50
Mrs L O’Grady, Aberdare
£27.00
Draw March 2015
1st 2nd
3rd
Mrs P Beckworth, Nottingham
£69.50
Mr C Gabriel, Buckingham
£41.70
Miss S Farrow, Northampton
£27.80
Draw April 2015
1st 2nd
3rd
Mr P Wright, Stafford
£71.00
Mr E Osgathorp, Cambridge
£42.60
Mr L Durkin, Merseyside
£28.40
Congratulations to all the winners
Unique insurance.
Partnerships that work.
Myaware receives a
donation for every policy
sold, at no extra cost to you.
We have worked with the Myaware and insurers, so that
those affected by myasthenia, and all pre-existing
medical conditions and disabilities, can access
comprehensive and competitively priced insurance.
Quiz Night
Running your
own quiz night
can be great fun.
Preparation will
be the key to the
success of this
event.
Sell on eBay
Get rid of
unwanted items
and raise money
for our charity.
Car Boot Sale
One man’s rubbish is another
man’s gold!
For more information please visit www.myaware.org
Alternatively, call the Unique team on
0800 519 0750 (quoting Mynews).
Opening hours: 8.30am - 6pm Monday to Friday and 9am - 1pm Saturday
home insurance • motor insurance
travel insurance • life assurance
Myasthenia Gravis Association is an Introducer Appointed Representative of Heath Lambert Limited. Unique is a trading name
of Heath Lambert Limited, which is authorised and regulated by the Financial Services Authority. Registered Office: 9 Alie
Street, London, E1 8DE. Registered Number: 1199129 England and Wales. www.gallagherheath.com SD3342_A/24012012
myaware.org For help, advice or further information
contact head office on 01332 290219
or email [email protected]
Summer 2015
news
20
The Invisible Patients:
New report reveals
failings in commissioning
neurology services
122 people with myasthenia
responded to our call to take part
in the recent Neurological Alliance
patient survey - the results have
now been published:
A new report by the Neurological Alliance
shows that commissioners are not prioritising
improvement of neurology services. The
report, which is based on a survey of almost
7,000 neurology patients and a Freedom of
Information audit of clinical commissioners,
reveals a number of findings including:
• Only 14.7% of clinical commissioning
groups have assessed local costs
relating to the provision of neurology
services, while
• Only 26.2% of CCGs have made an
assessment of the prevalence of
neurological conditions in their area
Find us on Facebook
facebook.com/myastheniauk
facebook.com/myawareie
facebook.com/groups/myaware
This is a closed group for people with
myasthenia and their families.
twitter.com/myawareuk
twitter.com/myawareie
http://www.myaware.org/forum
Join our online community, where you will
find, information and peer support 24 / 7.
Share your experiences with others. Ask
questions and learn more about myasthenia
from others with myasthenia from all
around the world. Make friends without
leaving your armchair.
Log directly onto www.myaware.org
then click on forum.
Helplines:
UK: 0800 919922 | Ireland: 1800 409672
We’re on the WEB
www.myaware.org | www.myaware.ie
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• These issues have a significant impact
on patients’ care, with 58.1% of
patients having experienced problems
in accessing the services or treatment
they need.
Read the full report here
http://bit.ly/14yBiNd
IMPORTANT INFORMATION
Benefits Officer
Email: [email protected]
Recycle4Charity
Recycle your print cartridges and raise funds
for myaware
Tel: 01273 400185
or email: [email protected]
Insurance for All of Your Needs
You may be aware that Heath Lambert have
been working with us for around 10 years
now and offer our members and supporters
insurance, including travel, house, life and
recently More 2 Life who are equity release
experts. Tel: 01603 828359
news
myaware
The College Business Centre
Uttoxeter New Road
Derby DE22 3WZ
Tel: 01332 290219
Web: www.myaware.org
Email: [email protected]
The Association does its best to ensure that the
information contained in this newsletter and on its
website is as complete and up-to-date as possible at
the time of publication, but cannot accept any legal or
other liability MGA is a Registered Charity No. England
& Wales 1046443. Scotland SC044744. Company
Limited by Guarantee No. 3038358 (England)
Closing date for next edition: Friday 4th September 2015
Summer 2015myaware.org