MSCTG Christmas fair 10 December 2011

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. Programme:- 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 Serve refreshments Help to run MSCTG's stall Set up the technical equipments Tidy away at 4pm Merton Sickle Cell & Thalassaemia Group (MSCTG) The Vestry Hall London Road Mitcham Surrey CR4 3ND 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 See link: http://www.happysoulfestival.co.uk/programme/programme-2011/wellbeing-and-feel-good/

---

 

Feedback from service user. 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. Best wishes Derrick

---

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. Please visit the site at http://www.msctgsurveys.dextervalentine.com/ and click on surveys in the top-right corner. The information that you provide will be held in the strictest confidence in accordance with data protection and will only be used by MSCTG. Thank you for taking the time to complete the questionnaire

---

Annual General Meeting - October 9th 2010 @ 6pm

The Merton Sickle Cell and Thalassaemia Group Management Committee request the pleasure of your company at their Annual General Meeting 2010. The theme for the day is Celebration. The meeting will be held on Saturday 9th October at 6.00pm and held at Cumberland Day Centre, Whitford Gardens, Mitcham, Surrey CR4 4AA which is a short walk from the MSCTG offices at Vestry Hall. Click here for a map. We look forward to seeing you there...

Click on the image to view a PDF version of the flyer. (~80kb)

---

Away Day - 11th September from 10am - 4pm

Dear Trustees, Members, Volunteers and Partners,

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.

The venue is Age Concern, London Road, Mitcham, Surrey, CR4 3NT, which is close to the office. Click here for a map.

Please confirm your attendance by contacting:

Eula Valentine at info@msctg.org.uk or by phoning 0208 646 8778

---

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 info@msctg.org.uk

---

Tai Chi and QiGong Course - Begins 12th August 2010

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 3ND, Tel: 020 8646 8778 or email info@msctg.org.uk

Click on the image to download a PDF version of the flyer. (~50kb)

For more information Tai Chi and the Lee Tai Chi Centre, you can visit 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 info@msctg.org.uk

Click on the image to download a PDF version of the flyer. (~500kb)

SCYSS Youth Club

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 system.

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.

For more information please visit the SCYSS website.

Also, the Sickle Cell Society will be having their  free annual Children's Holiday from 16th - 23rd August.  Please send nominations to: Sickle Cell Society 54 Station Road London NW10 4UA or: comfort.ndive@sicklecellsociety.org 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 Zoo! Eula will be volunteering on the holiday so expect feedback and a few pictures!

  MSCTG Merton Mayor's Official Charity 2007 - 2008

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.