MSCTG Merton Mayor's Offical Chairty

Merton 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 his support.

 

 

Have you seen her?

Most of you would have heard through the grapevine that a new 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!

Aged 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.

When I 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.

I 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)

With 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 family.

 

FUNDING

 Our 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 .

Tireless 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

July 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 successful one.

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 Boakye.

RAISING AWARENESS

Following 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.

It 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.

‘Connections' 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, Wimbledon .

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.

SUPPORT GROUPS

Last 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 .

 

 

 

 

 

 

 

After 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.

As 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.

We 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!

 

 

Five Myths~

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!

 

Five Facts~

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 means tested

You can apply for a Freedom Pass and Taxi Card

 

MSCTG on Local Radio

In 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.

 

 

CEMVO Seminar

Eula 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)

Merton 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.

Sickle 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.

When 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 naheed@msctg.org.uk

The 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 logo.

The fantastic drawing of me above is by one of our members Precious Boakye, Age 8.