would like to especially thank Dr Mary Clarke a consultant
Heamatologies from St Helier who has donated a tremendous amount of
money to the amount of £245. This
organisation has greatly benefited from her generousity.
Vincent Burne a running “Feeling Fine
British 10 Kilometer race" on the 1st of August 2004 he raised £312
Ahmadiyaa Muslim Association who
donated £3000 to the group at our last
Joyce Ajayi, family and friends
continue to support us every year with donations. This years total is
Mitcham Youth Club raised £50 for the Group during Black History month
Merton College 'Funday" raised a
Notting HIll Methodist Church raised a
If you would like to raise money for our
organisation Contact Us now!
The Vestry Hall, 336 -338 London Road, Mitcham Surrey,
Come along to MSCTG's Christmas Fair on 10 December 2011. You will find lots of wonderful things that you will be able to purchase for that special Christmas present.
Bring the children to see Father Christmas, join in the Carole singing, enter the raffle to win fabulous prizes and lots more!
We will be making a short presentation in the meeting area about Sickle Cell Anaemia Thalassaemia and showing a short DVD (23 minutes) called 'The Family Legacy' at 1pm and again at 3pm. Please see details on the flyer below
Your support is needed:-
Flyers printing please displaying the flyer on your office/club/pub etc. notice board, forward on to your friends, family and relatives, colleagues, and acquaintances and add the details to your websites.
A volunteer to be Santa is required. We would also like to hear from people of 'fine-voice' who would be willing to sing a selection of Christmas Carols.
We would also like to hear [see address below] from all who can donate New, Inexpensive presents for the children.
Can you donate the prizes for the Raffle draw?
For those who would like to book a free place for a table/stall (spaces are being booked up fast), send me an email to let me know and I will put your name on the list and send you a booking request! We are asking for 10% of your takings for the day or a donation.
If you are making a donation of an item to MSCTG that we can sell to raise funds for the Group, please can you drop it off at the Vestry Hall - see address below.
Those who are willing to help on the day, we will meet at 9.00am to:-
Set up stalls and marquee
Take photos all day
Help to run MSCTG's stall
Set up the technical equipments
Tidy away at 4pm
Merton Sickle Cell & Thalassaemia Group (MSCTG)
The Vestry Hall
Tel: 020 86468778
Happy Soul Festival
Wellbeing and Feel Good
Merton BME Forum in partnership with Merton Unity Network, Merton Sickle Cell & Thalassaemia Group (MSCTG) and Ethnic Minority Centre invite you to join them for an afternoon of entertainment, including Asian and Tamil dance, education and summer fun, exploring health and wellbeing from adolescence to adulthood. Come along and join in the fun!
Short Films that will be shown during the day will be:
The Family Legacy
A moving story of the emotional journey one family makes when their baby is born with sickle cell disease.
Out of the Shadows
A short documentary made by young people to help create a better understanding of Sickle Cell and also challenge some of the myths that surround the disorder.
Vestry Hall, Saturday 4 June, 3.30pm – 7.00pm
The support and advice that I received from this service was extremely helpful to me and my partner.
My partner was born with the condition and we have been together for several years. I had little knowledge on her condition and how it impacted on her day to day life.
I was able to leave with an understanding of the condition, the warning signs of an episode, the safest ways to support my partner when she was unwell and the some things to when she is in extreme pain.
Was it not for this service I would not understand the condition or the limitations that it puts on my partners life. I further would not have had knowledge of how to support her to live with this condition.
I had some socially constructed ideas that have now been discarded on the basis that I was able to obtain evidence based advice on my partner’s condition. I now am able to be more supportive to my partner and able to control my emotions in relation to her having this condition.
I was concerned about starting a family and received advice around this issue and the safest way to begin the process. I was offered advice and contacts for professionals in my community that could advise me further if need be. Thanks to the support we received we have become stronger as a couple and are now moving forward with our relationship and look forward to starting a family soon.
MSCTG Feedback Questionnaire
Merton Sickle Cell & Thalassaemia Group would appreciate your help completing a short questionnaire which will only take 5 minutes of your time. This will help us with the review of the organisation and to improve the services we offer to people with Sickle Cell & Thalassaemia.
MSCTG is in the process of a review of the organisation, looking at its efficiency and effectiveness, and its medium-to-long term future. We currently have a Consultant on board to help conduct the external evaluation.
Your presence is required to make the review of the group a successful outcome.
Community Student Visits - 15th September 2010, 10am - 5pm
Raising Awareness with Medical Students, in partnership with St Georges University Hospital
MSCTG would like your help once again to raise awareness about Sickle Cell and Thalassaemia Disorders, by helping your group; you will help those you care for, yourselves and others like you.
We have organised a student visit and are asking members to participate by sharing experiences with the students. We have already had two visits in January this year which were very successful and we plan to continue with this service next year.
There will be two sessions for that day, one in the morning and one in the afternoon, both on Sickle Cell & Thalassaemia Disorders. After the morning and afternoon sessions we will separate into smaller discussion groups, and I will ask one or two members to be part of those groups before we come together for an interactive session.
We will also be highlighting:
Community Services for people with Sickle Cell and Thalassaemia
Watching a DVD ‘The Family Legacy; and
Dr Mary Clarke - Consultant haematologist from St Epsom and St Helier Hospital will do a presentation.
I would also like the assistance of two or three people who would be prepared to help out on the day, if you could arrive about half an hour beforehand on the day we can prepare refreshments.
Travel expenses will be covered and refreshments will be provided.
Please contact Eula for more information at Merton Sickle Cell and Thalassaemia Group at the Vestry Hall,
London Road, Mitcham, CR4 3ND, Tel: 020 8646 8778 or email firstname.lastname@example.org
Chi and QiGong Course - Begins 12th August
MSCTG, in partnership with Vicky Ahern from the Lee
Tai Chi Centre, are
proud to announce we will be running a Tai Chi and Qi-Gong course
starting 12th August 2010
and will be held on Thursdays for 6 weeks from 2-4pm. The course
will be held
at the Merton Sickle Cell and
Thalassaemia Group, Vestry Hall, CR4 3ND.
The course is free for people with Sickle Cell and their carers.
There is a small fee of £5 to non-members for the 6 week course.
"By practicing Tai Chi and Qi-Gong we learn to listen, relax and let go
of stress and tension, whilst moving gently and slowly to improve
focus, balance, posture and the natural flow of chi energy in our mind,
body, spirit and life." We will be focussing on gentle breathing
and exercises which will help support your health.
To secure a place on the course: RSVP
Merton Sickle Cell and
Thalassaemia Group at the Vestry Hall, London Road, Mitcham, CR4
Tel: 020 8646 8778 or email email@example.com
For more information Tai Chi and the Lee Tai Chi Centre, you can
their website at www.thechiclinic.co.uk
Sickle Cell and Patient-and-Carer Training (PaCT)
- Begins 20th September
MSCTG's PaCT programme will be holding a free 2 week course.
We will be focussing on a range of strategies for stress management,
including evidence-based relaxation exercises, visualisation and
easy-to-learn Hand Reflexology techniques. Classes are chair-based and
we recommend you wear warm, comfortable loose fitting clothing. Classes are taught by the Full Circle Fund's Advanced
Reflexologist and Yoga trainer Gabriele
Steen (MAR, MICHT, MATL).
The course will be held at The
Conference Room, 15 Broadwater Road, Tooting, SW17 0DS from 6pm
- 7.30pm, which will include registration also.
To secure a place on the course: RSVP
Merton Sickle Cell and Thalassaemia Group at the Vestry Hall,
London Road, Mitcham, CR4 3ND, Tel: 020 8646 8778 or email firstname.lastname@example.org
SCYSS is a registered charity that supports people with Sickle
Cell and young stroke survivors. Many children and teens
suffering with Sickle Cell experience other parallel problems created
by the disease, like strokes, strong pain in different parts of their
bodies, low self-esteem, hyperactivity problems, and a weak immune
From the Summer of 2010 through to March 2011 SCYSS are running youth
clubs and groups. There are Summer Fun trips from July through to
August 2010, and 2 Youth Groups, group A is for youths from the ages of
8-12 years and group B is for ages 13 - 19.
The holiday is for children with Sickle Cell Anaemia and gives children
the chance to have fun and participate in group activities.
Previous adventures have included Thorpe Park, Chessington and London
Eula will be volunteering on the holiday so expect feedback and a few
Merton Mayor's Official Charity 2007 - 2008
Sickle Cell & Thalassaemia Group are very proud to announce that
our organisation has officially been appointed as Mayor's Charity –
London Borough of Merton 2007- 2008.
We would like to thank Councillor John Dehaney for
Have you seen her?
Most of you would have heard through the grapevine
Admin/Finance Officer has been appointed. Well I am writing to confirm
that the hype is true and that I am in fact Eula “Batman” Valentine's
new sidekick, Crystal “Robin” Small, ready to serve and protect. That's
me at the bottom of the article. As a rookie to the Organisation I
would like to take the time to introduce myself so that the next time
you ring the MSCTG office you won't be left thinking, “who is that
random girl answering the phone? We want Eula back”. Just to put your
anxieties to rest, Eula is still here!
22, I recently graduated from Queen Mary University with a degree in
English Literature. I am also the proud Mum of my 3 yr old son. My
family are originally from Barbados and I have two elder brothers, one
of which suffers from Sickle Cell. I have seen the difficulties and
stresses my brother has had to go through, both at home and in the many
hospitals that he has visited. We have spent many years traveling from
clinics to hospitals and back again in order to find adequate treatment
and understanding for my brother's condition. After 10 yrs, the quest
has still not come to an end.
saw the job advertisement for the Merton Sickle Cell and Thalassaemia
Group, it had immediate appeal. I wanted to be apart of a group which
focused on caring for your mental AND physical wellbeing. Too many
professionals possess an abundance of science but not nearly enough
heart. I wanted to help other Sicklers and Thalassaemia suffers as well
as develop my own knowledge about both of these conditions.
am now four months into my time here and I have met some extraordinary
people, i.e., you guys! Many have shared their life experiences with me
and imparted much of their wisdom. I admire their strength, their
determination and ever faithful spirit. I am thankful for the
opportunity for working with such a innovative and dynamic group. I
look forward to meeting more of you!
Tribute (September 2006)
a sad and heavy heart, we announce the death of one of our Management
Committee Members. Mr Tayo Awosika was a Member, Volunteer and IT
Consultant for some time and later joined the Management Committee as
the Group Treasurer. He was known to the Committee to be a very
intelligent and active man. He will be greatly missed for his gentle
smile and positive thinking. MSCTG sincerely extend our sympathy to his
external funding streams require perseverance and effective strategies.
Accordingly, we maintain funding from ‘The Big Lottery', ‘Bridge House
Trust' and ‘BBC Children in Need' with other sources of funding
donations via numerous members of our local community collectively.
These include ‘Mitcham Youth Centre', ‘London Marathon', Geffory of
‘Blythe & Co Chartered Accountants', Fiona Beckford, Sharon
Williams, Mr and Mrs Cook, Daisy Powell, Bintu Amin, Eufema Soriano,
Cheryl Graham, Dr Mary Clarke, Mary Sannie and Claudine Valentine .
efforts were made in the struggle to meet deadlines for applications.
We submitted applications to ‘Bridge House Trust' for the third year
running and the ‘London Borough of Merton' ‘Community Care Fund'. Our
submissions were successful, although not awarded the full amount
applied for, granting financial security for 2007-2008. In rapid
succession, we have also recently submitted proposals to ‘City
Parochial Foundation' for 2007-2009, and the ‘GlaxoSmithKline Impact
Award' through ‘Kings Fund' for 2007-2008 – to be confirmed.
NATIONAL SICKLE CELL AWARENESS MONTH
saw us once more at ‘Merton Civic Centre', invited by ‘Care Connect',
where we set-up our display and handed out leaflets, whilst encouraging
the general public, much of whom were professionals, to become familiar
with what MSCTG represents, inviting those who expressed interest to
sign-up and become Members. Crystal and I were supported by the Chair,
Ronnie, and other Members of the Group. This event was a very
During June, we
attended a ‘Carer's Week' event – organised by ‘Carer's Support
Merton', which was held at the ‘YMCA' in Wimbledon . We were invited to
support the event, using the opportunity to raise awareness with other
service providers and distribute information to the general public from
our stall, assisted by Staff and a Member of our User Group, Theresa
various meetings in 2005 with ‘Merton & Sutton Primary Care
Trust's' Chief Executive and other senior staff, this year began with
the launch of ‘Sutton & Merton Sickle Cell Forum' – an initiative
to bring together representatives from ‘Epsom & St. Hellier NHS
Trust' and ‘Sutton & Merton NHS Primary Care Trust', specifically
Consultant Haematologist, Dr Mary Clarke, Senior Manager, Janet
Mountford, Specialist Nurse, Carol Edwards and a Volunteer from our
User Group, Norecia George. Our aim was to establish the need for
better service provision and plan a way forward. We continue with this
initiative, proposing to develop further and invite the ‘Wandsworth NHS
Primary Care Trust', along with Members and other service providers in
South West London, to participate.
was arranged in February that Dr Mary Clarke facilitate a Work Shop on
the subject of Sickle Cell and Thalassaemia, organised by Patricia
Anderson of ‘ Merton Unity Network ' for their ‘Health Day'. Dr Clarke
kindly obliged and was positively received with affirmative feedback.
invited MSCTG to deliver a presentation on the origins of Sickle Cell
and Thalassaemia for ‘Black History Month' in October for the benefit
of ‘Young Peoples Service Providers'. This also took place in the YMCA,
One of our significantly
active Member Groups, ‘Up Town Dance & Learning Centre', organised
a successful Youth Conference in March, providing MSCTG an avenue to
arrange for the presence of an established advocate, Stephanie Suliuman
of ‘Wandsworth Sickle Cell Service', to deliver a presentation on
Sickle Cell and Thalassaemia. Various Volunteers and Members
enthusiastically engaged, achieving admirable reviews.
year, our Young Members participated in organised events, including the
annual Halloween Party at ‘The Grand' in Clapham led by the charity and
events organisers, ‘Beautiful', and run by ‘Daytrippers'. This year's
Halloween Party, also held at ‘The Grand' on Saturday, 28 November, was
thoroughly enjoyed by our Young Members, Committee Members, Staff and
Volunteers. Our previous member of staff, Naheed, was sighted
representing ‘Daytrippers' on the day. The entertainment was
exceptional, featuring various performers and celebrities, such as
Ashlyene from Big Brother, Fundamentals, Déjà vu, Espree and former
X-Factor contestant, Chico .
being with us for only a few months, our new member of staff, Crystal ,
organised a ‘Tea Pamper Party' fundraising event on 21 August for our
Carers, Members, Friends and Family, with another event imminent. We
received excellent feedback, not only from the participants, but also
from the Volunteer Therapists who kindly gave their time and effort.
Great appreciation was expressed to them by MSCTG and all who attended.
Sickle Cell Awareness Month
As you all
know July is always National Sickle Cell Awareness month.
usual this means that Eula and I are bombarded with questions about
Sickle Cell and Thalassaemia! This year, as last, we had a week long
display at the Merton Civic Centre.
decided to attempt to dispel some basic myths about the disorders and
to unleash some hidden truths, these had exactly the response we were
looking for! Many people who might have otherwise shied away from
speaking to us came up to the stall to ask questions!
Only African and Caribbean people
get Sickle Cell disorders!
Only Asian People get Thalassaemia!
I don't need to tell the doctors
about my child having Sickle Cell Trait , because this
condition has no health implications at all!
People with Sickle Cell disease
cannot get malaria!
You can catch Sickle Cell disease
from another person!
You may be entitled to Disability
Living Allowance (DLA)
You can apply for a Disability
Parking Blue Badge
If you get Disability Living
Allowance and have a Blue Badge you may be exempt from Road Tax
Disability Living Allowance is not
You can apply for a Freedom Pass and
MSCTG on Local Radio
keeping with Awareness month, Eula was invited to a local radio station
in Brixton to be interviewed about Sickle Cell & Thalassaemia on
Tuesday 2 nd August 2005.
It was a long and memorable night
which Eula and I will not forget for years to come.
also took part in and helped organise the Health Network Forum hosted
by the Council of Ethnic Minority Voluntary Organisations (CEMVO).
Presentations were made to large audiences about Sickle Cell and
Thalassaemia. Special guest speakers were ‘Specialist Nurse' Margery
Hawthorne of St Georges Hospital, Tooting and Eula Valentine of MSCTG.
It was a successful event which earned the Group a nice donation from
CEMVO, thank you Kois for asking us to get involved.
Welcome to MSCTG's new website! (December 2004)
Sickle Cell & Thalassaemia Group (MSCTG) has been established since
1991 it is the only group of its kind in the London Borough of Merton
which offers information and support to people suffering from Sickle
Cell Anaemia and Thalassaemia Disorders.
Cell Anaemia and Thalassaemia Major are inherited blood disorders from
both parents who are carriers of the trait. In Britain 1 in 10 people
are considered ‘at risk' of having the Sickle Cell Trait. It is a myth
that these disorders only effects people of the black and ethnic
minorities, it is not an exclusive illness! However Sickle Cell Disease
mostly affects people who are of African, African Caribbean, Italian,
Greek and Arab decent. Thalassaemia mostly affects Asians, Greeks,
Italians, Africans, as well as Caribbean and Hispanic communities.
I joined the group just over a year ago I felt that although there was
sufficient medical information about Sickle Cell on the internet there
were no interactive resources based in the U.K. I wanted to create an
online community based website for people suffering from Sickle Cell
and Thalassaemia. With this in mind I hope you like what we have
created and make it your own by writing in and contributing to it.
Contact me if you would like to contribute email@example.com
first description of Sickle Cell disease was by a Chicago physician who
noted in 1910 that a particular patient of his had an Anaemia that
could be characterised by the unusually shaped red cells that were
“sickle shaped”. In 1998 when our logo was developed we thought we
should mirror this shape, the animation on the introduction page
represents the thought process the Group went through to make MSCTG's
The fantastic drawing of me above is
by one of our members Precious Boakye, Age 8.
Welfare Benefit Surgery
May 2004 Merton Sickle Cell & Thalassaemia Group have been working
in partnership with Disability Alliance Merton (DAM) to provide you
with a Welfare Benefits Surgery. Over the last 14 months we have
enabled many of our members to benefit from the expertise of Mr Atu
Suronku-Lindsay. He has provided many hours of Welfare benefit advice
to the Group resulting in our members claiming thousands of pounds of
Disability Living Allowance, Incapacity benefits and Community care and
Social fund grants just to mention a few. MSCTG Thanks Atu and DAM!
We regretfully inform you that
Disability Alliance Merton Welfare Benefits Surgery project
may now come to an end,
unfortunately due to a lack of funding. Therefore as of August 31st
2005 you may not be able to attend Welfare Benefit Surgery sessions on
a Thursday evening.
MSCTG would like to independently continue the service on a much
smaller scale as of the beginning of September 2005. We hope to
continue the service by referring some of the member's urgent and
technical needs to Pat Ndudi one of our Management Committee members
who is an Advisor and has a good understanding of both Sickle Cell
will inform you in due course of any significant changes to this
proposal. If you need any advice from the beginning of September 2005 please
ring the office to arrange an appointment. We will need
plenty of time to make the necessary arrangements.
Sickle Cell & Thalassaemia Group is proud to announce that we have
been awarded a £50,000 grant over two years from the Bridge House Trust
a Corporation of London. Following our recent application to the BBC
Children in Need Appeal we are pleased to inform you that we
have also been approved a grant of £38,712 over the next 3 years!!
personal fundraising attempts with the Upper Tooting Methodist Church
were also successful we will let you know how much money was raised
just as it has been all collected.
would also like to thank Vincent Burne a supporter of MSCTG who ran the
“Feeling Fine British 10 Kilometer race" for us on the 1st of August
2004 he has raised £312. On the same sporting note we would like to
thank our four Flora Light Runners who ran for us on the 5th of
September 2004, well done ladies!
big thank you to the Ahmadiyaa Muslim Association who donated £3000 to
the Group at our last AGM from their sponsored walk in 2003.