complete Brochure 2019

Useful Links
Usefull Links
Mesothelioma Warriors Blog
https://rayandmave.wordpress.com/
T
Fundraising
https://www.mavisnyefoundation.com/to-make-a-donation.html
/
Twitter
https://twitter.com/grandmamavis
Facebook
https://www.facebook.com/groups/432649193771341/
Legal and Financial Advice Helpline
0808 231 0963
www.mavisnyefoundation.com
Registered Charity No. 1172765
contact@mavisnyefoundation.org
Registered Charity number 1172765
Quo-modo
JULY
2019
Supporting Victims of Mesothelioma.
Registered Charity No. 1172765

Contents:
About the Foundation
About Mavis
The Journey Part 1
The Journey Part 2
The Journey Part 3
What is Mesothelioma and
How is it caused
A claim through a Solicitor
FAQ`s When making a Claim
2018 Update
2
1

The Mavis Nye Foundation was created to
inspire victims of mesothelioma an Asbestos
related cancer.
To give hope to fellow victims and to show
light at the end of the tunnel
Its objectives are to offer Grants to enable
Clinical research teams to produce New Drugs
to fight mesothelioma.
To support Young Student Doctors to become
Doctors Practising in Mesothelioma.
Ultimately further Grant will become available as Funds Permit.
4
Founder Mavis Nye and her Lifelong Husband Ray
3

About the Foundation
About Mavis
The Mavis Nye Foundation was created
to inspire victims of mesothelioma,an
asbestos related terminal cancer.
To give hope to fellow victims and to show
a light at the end of the tunnel.
The foundations objectives are to:
To offer grants for Clinical Research into
mesothelioma
Mavis is the president of the Mavis Nye
Foundation.
and is an inspiration for all mesothelioma
victims.
She is an Advocate at Mesothelioma UK
(Charity.) and
is a patient representative at the following.
Patient Representative for Research at St. Bart`s
Hospital.
Patient Representative at Cancer Research UK
Patient Representative at East Kent NHS Trust
Patient Representative at NHS (England )
Patient Representative at Cancer Network East
NHS
On Board for Confirm Trial
On Board for Mars 2 Trial
On Board for MIST Trial
To Name a few:
Mavis was Honoured with a BCA for her dedication and hard work
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5

The Journey Part 1.
Mavis Nye`s journey began in 1957 when aged 15 she met Ray who
was to become her Lifelong Partner.
He was an apprentice in the Royal Naval Shipyard in Chatham.
They would meet during lunch breaks and later in the day.
He would have on his clothes the fine invisible dust of Asbestos.
No one at that time warned them that this would in later life become
a major issue. After their first year together Ray was called up for
National Service. The two years separation was no barrier
to asbestos contamination ,
because unwittingly Mavis was already exposed.
The damage was done and the clock was ticking.
On Rays demob they got Married. They continued on to
raise a family and lived a normal life
But! The damage was done and the clock was ticking
It was 49 years later that the devastating consequences of their first
meeting would now return. In 2009 Mavis was suddenly aware that
her breathing was laboured and this quickly resulted during a short
walk to the shops across the road,that she was now unable to breathe.
An urgent appointment with our GP was made and within hours she was
admitted into Hospital where 7 litres of fluid were drained from her lung.
This was the beginning of a long nightmare journey.
After weeks of tests and Biopsies she was given the news that she had
mesothelioma. It was explained that it was a terminal cancer, that there
was no cure and no treatment available.
The prognosis was a life expectancy of about 3 months, and that she
was advised to return home and put her affairs in order,
The following 4 years were spent on chemotherapy and failed drug trials.
A further year followed the oncologist report that the chemo was no longer
working and that she was too toxic to proceed.
There was no longer anything else that could be done
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9

The Journey Part 2.
Although Mavis had been in treatment she had not sat idle.
She decided early on that something needed to be done.
And so she began to set about searching for answers.
She found a small group of like minded victims on social
media and joined them. It was headed by Debbie Brewer.
She and Mavis became good friends but sadly Debbie
succumbed to this insidious disease leaving Mavis to
carry the flag. She set to with a vigour that was
unstoppable. She expanded these small groups humble
beginnings and created various groups on social media
and the mesowarriors as they had become known as
became a global presence for information and help and
advice. Today her work is internationally recognised.
She is available on a personal level to support and
encourage victims of mesothelioma.
She has the support of manny influential people
sympathetic to here cause.
She is constant demand to give presentations to spread
the word and share her story.
She talks with Lords,Ladies,Professors,Oncologists and
Doctors,And MP`s. She has been welcomed in the
Asbestos industry.
She speaks regularly in the House of Commons in the
company of distinguished speakers.
She was awarded a BCA for her work. She is a patient
rep and sits on various committees and support groups.
Her energy and enthusiasm has no boundaries.
The following year, from the last result that she has no
hope of treatment, was spent on these campaigns, during
which she was advised by Professor Dean Fennell that a
small drugs trial was about to start in the Royal Marsden,
that was for mesothelioma.
The weeks that followed were productive in that she was
referred for interview for assessment. Some weeks later
she received news that she had been accepted on a trial
of just 3 people.
Of those 3 she remained the only survivor.
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11

The Journey Part 3
The Mk3475 trial Later to be known as Keytruda trial. It
was a comprehensive trial. Demanding treatment every
14 days for up p 2 years depending on response.All of
which Mavis grasped with both hands.
She was slowly dying so what had she to loose. This trial
was to prove a miracle. Shrinkage of the tumours began
within a few weeks of treatments.
She is still monitored regularly and hopes this will
continue. At the moment taking into account the
damage the disease and chemotherapy have done
to her she is active and is living a better quality of
life than the previous 7 years.
She still has issues, her body has been irreparably
damaged, unseen
They were quick to point out that its not a
cure because it could return at any time.
Sadly to other 2 people on this trial did not
survive. But to date Jan 18 she has had 18
months
of no treatment and no progression of the
Mavis says that she has been given
another chance at life so that she can
help other sufferers
12 13

What is mesothelioma and how is
it caused
Mesothelioma is a tumour (or cancer ) which usually grows in the
pleura (the external lining of the lungs) or the peritoneum (the lining of
the abdomen)
It was not generally recognised until the late 50`s and is nearly always
caused by exposure to asbestos. There is a long latency period
between when the exposure to asbestos took place and when
symptoms develop. At its shortest this is 12-15 years and it is typically
about 30-40 years, although cases of 60-70 years have been reported.
The amount of exposure to asbestos required for mesothelioma to
develop is not known, but medical science has not ruled out that very
low levels of exposure can cause the disease.. Mesothehelioma can
result from exposure to all types of asbestos, including blue, brown
and white
There are 3 types of compensation for mesothelioma.
The first is welfare benefits and a lump sum paid by the Department
for Work & Pensions (DWP)
The second is a different lump sum, known as "damages",which can
be claimed, using a solicitor, from one or more of the businesses or
organisations (Defendants) responsible for the individuals exposure to
asbestos.
The 3rd type of compensation is the Diffuse
Mesothelioma Payment Scheme(DMPS). This
sometimes applies applies when a damages
claim cannot be made because the
Defendants have been dissolved and their
insurers cannot be found. The DMPS was set
up in 2014 and makes a payment, based on
the value of a damages claim, from a fund
which insurance companies contribute to.
A claim through a solicitor
As well as claiming benefits and a lump sum from the Department for Work and
Pensions (DWP) ,someone who has mesothelioma should consider making a claim
through a solicitor.
This is for a lump sum of compensation known as damages. As most cases of
mesothelioma result from exposure to asbestos in work. most claims,
are made against the individuals employer/employers. Damage claims are
sometimes possible if someone was exposed to asbestos at home (because another
member of the family brought asbestos dust into the home on his/her working
clothes) or through living near an asbestos factory.
If someone has received a lump sum and/or welfare benefits from (DWP) for his/her
mesothelioma, he/she is still entitled to claim damages. The amount of damages is
nearly always higher than the amount of the benefits and lump sum a claimant is
awarded.
The benefits and lump sum which have been paid are taken into account and
deducted in whole or in part (according to the particular circumstances of the case)
from any damages an individual receives.
A claim for damages is more complicated and takes longer than claims for DWP
benefits and the lump sum. It is important, therefore, to contact a solicitor who
specialises in asbestos claims and to do this as soon as possible.
A solicitor should offer an initial interview at the claimants home free of charge.
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14

FAQ`s When making a claim
How is a claim valued.
Mesothelioma is a tumour (or cancer ) which usually grows in the
pleura (the external lining of the lungs) or the peritoneum (the lining of
the abdomen)
It was not generally recognised until the late 50`s and is nearly always
caused by exposure Some to asbestos. times men There and is women a long latency with period mesothelioma
between when the do exposure not want to to asbestos contact took a solicitor place and because when for
symptoms develop. At its shortest this is 12-15 years and it is typically
example.
about 30-40 years, although cases of 60-70 years have been reported.
The amount of exposure to asbestos required for mesothelioma to
develop is not known, They but think medical that the science company has not which ruled out exposed that very them
low levels of exposure to asbestos can cause no the longer disease.. exists. Mesothehelioma can
result from exposure to all types of asbestos,including blue,brown and
white They did not work with asbestos themselves, but
only near others who did.
There are 3 types of compensation for mesothelioma.
The first is welfare The benefits exposure and a to lump asbestos sum paid happened by the Department many years
for Work & Pensions ago. (DWP)
The second is a They different think lump that sum,known at the time as "damages",which they were exposed can be to
claimed,using a solicitor,from one or more of the businesses or
asbestos no one knew that it was dangerous.
organisations (Defendants) responsible for the individuals exposure to
asbestos.
In fact cases in which claimants say things like this
at first often succeed. This is another reason why it
is advisable to see a specialist solicitor promptly.
In a successful claim a lump sum is awarded. There are two parts to this:
first, an amount, usually between £50,000 and £90,000, for the pain and
suffering caused by mesothelioma, and second, compensation for the
financial consequences of the disease (eg.Loss of earnings and /or pension
and the cost/value of nursing care and equipment.
Income tax is not paid on damages.
An award of damages does not affect an individual`s right to continue to
receive non means tested welfare benefits (e.g. Industrial Injuries
Disablement Benefit,Personal Independence Payment/ Attendance
Allowance)
Someone who is receiving means tested benefits can set up a trust and pay
his/her damages into this. This is a straightforward process and ensures that
damages are ignored in assessing entitlement to means tested benefits.
What information will a solicitor need?
The solicitor will need to meet the claimant, ideally in person at his/her
home, to take a detailed statement about how he/she came into contact with
asbestos dust and to get an overview of the individual`s working history and
his/her personal and financial situation. after this meeting, in many
cases ,contact between the solicitor and client is limited to phone calls and
letters.
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16

How is a claim funded.
If after an initial free interview, the solicitor thinks that the
claim
Mesothelioma
has a
is
reasonably
a tumour (or cancer
strong
) which
chance
usually grows
of succeeding,he/
the
pleura (the external lining of the lungs) or the peritoneum (the lining of
she the abdomen) should offer to act under a condition fee ("no win no
fee") agreement. This arrangement means that there is
no financial risk to the claimant or his/her family if the
claim is not successful and that,if the claim succeeds,the
claimant receives the whole of the amount of damages
It was not generally recognised until the late 50`s and is nearly always
caused by exposure to asbestos. There is a long latency period
between when the exposure to asbestos took place and when
symptoms develop. At its shortest this is 12-15 years and it is typically
about 30-40 years,although cases of 60-70 years have been reported.
awarded,without The amount of exposure any to asbestos deductions required being for mesothelioma made. to
develop is not known,but medical science has not ruled out that very
low levels of exposure can cause the disease.. Mesothehelioma can
result from exposure
How
to all types
long
of
will
asbestos,including
the claim take?
blue,brown and
white
Straightforward cases sometimes settle without court
There are 3 types of compensation for mesothelioma.
proceedings being issued within about four months of the
solicitor The first is starting welfare benefits work. and If a an lump early sum paid settlement by the Department is not
for Work & Pensions (DWP)
possible and court proceedings are issued (which does
not The second necessarily is a different mean lump that sum,known there as will "damages",which be a trial) these can be will
claimed,using a solicitor,from one or more of the businesses or
follow a "fast track" procedure specifically for
organisations (Defendants) responsible for the individuals exposure to
mesothelioma asbestos. claims. This aims to conclude cases within
about four months of issue. Often this procedure also
requires the defendant to make a payment on account of
damages (usually £50,000) within about two months of
issue.
What happens if the claimant dies before the claim is
concluded.
The executors or administrators of his/her estate can
pursue the claim.
19
What is the time limit for claims.
Court proceedings are usually required to be issued
within three years of the date of Diagnosis. The courts
have the discretion to allow claims to go ahead even if
they are issued outside the three year period, but there
can be no guarantee that this will be exercised in any
given case. It is therefore, very important to contact a
solicitor as soon as possible after diagnosis of
mesothelioma.
Should a man/or woman with mesothelioma make a will
or, if he/she already has one, review this?
Yes. This is especially important if he/she has a partner
but is not married.
What happens if the defendant has been dissolved and
its insurers cannot be identified?
If the defendants to a claim have been dissolved this
does not necessarily mean that a claim cannot be made.
If the defendants insurers can be identified ,the claim can
effectively be brought against them.
Sometimes ,however, the relevant insurance companies
cannot be located because records have been lost or
destroyed. Consequently ,a civil claim for damages
cannot be pursued. A claim under the diffuse
Mesothelioima Payment Scheme should be made.
18

2018 Update
In April of 2018 her world came crashing down for a second time.
A routine scan result was the mesothelioma has returned,
The old growth was still sleeping,this was New Growth.
After a meeting it was agreed that she could receive the drug
again for one more year.
Historically she was the First mesothelioma person to get complete
response,creating history. So she returned to the Royal Marsden
once more for treatment.
After 4 infusions ,a scan report showed a 14% reduction. Jubilation
it was working again. But this joy was short lived. After a very nasty
chest infection treatment was stopped. Later a further scan result
was not so good,it showed only stable.
After consultation it was agreed that when the infection clears
treatment would resume, should the next scan show stable, an
additional drug may be introduced.
In the meantime ,her DNA results which compared her 10 year old
bi-op against a recent one, Showed stunning results.
So much so that the results were being sent for inclusion in the
Medical Journal.
If the treatment should result in further shrinkage,they may recall
past patients on whom the drug failed,to offer them another chance.
The Royal Marsden are so excited.
So to date January 2019 all is still to be played for.
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