Bulletin - May 2004

Welcome to the May 2004 Bulletin. As you can see we have a new logo and a new name, find out more inside. See page 3. Also in this edition we have the latest news of SWEDA and the projects we are supporting, and some poems from you our readers. We are always pleased to hear from you and look forward to receiving your views, poems or book reviews. With this edition we will be marking the launch of ‘The Friends of SWEDA’ see page 4. We do hope you will be interested in joining us and to take part in the changing face of SWEDA.

And finally….. We hope you will join us in wishing all the best to Anne Wynn-Jones, who has been our Chair of Trustees since we began as MEDA in 1994 as she retires at this years A.G.M. I do hope you enjoy reading this bulletin, and finally my thanks to all those who helped me to produce this bulletin and the volunteers who do the finishing touches for us.

In the next issue of the bulletin we will be focussing on Caring - The experience of knowing someone with an eating disorder.

So, we are asking all those affected by eating disorders, carers, families/relatives, friends and professionalsto please send in any articles, poems, ideas or questions you would to like to have included, send by post or email to Sandra Woodward, at SWEDA by 30th August 2004.

SWEDA as well as our AGM, in the last few months have been using The Bear Inn in Street for holding our meetings, We wish to thank the staff for making us so welcome, and for providing us with excellent service and refreshments.

NEW NAME, NEW LOGO

SEDA is now officially SWEDA.

Somerset & Wessex Eating Disorders Association.We are now calling ourselves SWEDA so that we can branch out in to the counties surrounding Somerset.

We have been limited in the past to concentrating on those living in the county of Somerset, as our current funding is specific to that area. Now we will be able to apply further a field for funding, and when we have funding in place, then we will be able to offer our services to a wider audience.

Our new logo was created by a student at Strode College, Street. 16 logo’s were designed and it was a hard decision to choose just one, as they were all very good designs, but in the end this was the winner.

Split

There's a part of me that knows its wrong,
Yet the other continues to will me on.
There's a part of me that feels the guilt,
Yet the other screams when the scales tilt.
There's a part of me that wonders why,
Yet the other part is making me die.
There's part of me that hates to deceive,
Yet the other refuses to believe.
There's a part of me that wants to be normal,
Yet the other hates to be full.
There are 2 parts, the good + the bad.
Is this normal? I feel mad!
Anon.

You will be receiving a leaflet about the Friends Scheme with this bulletin. As with all charities we need to strengthen our financial support, and our membership base. A friends scheme is one of the ways we are doing that, and I hope that you are able to support us in this way. Please do contact us if you have any queries after reading the letter and leaflet. Our thanks go to The Linnet Trust who have paid for the costs involved in setting up a friends scheme, and this mailing.

The National Institute for Clinical Excellence (NICE) Guidelines on Eating Disorders are now available. These are national NHS recommendations about good practise and service development. Everyone involved in providing support and services in Somerset met recently to look at how we measure up to NICE, and plans as to how we can improve. We’ll put a copy of the finalised plan on our website as soon as possible so as to get your views.

We have copies of the guidelines at SWEDA; if you Would like one contact Sandra or go to our website and click onto the link, or direct website for NICE. www.nice.org.uk/CG009quickrefguide

Our next bulletin has a special feature on ‘carers’ and we hope to have articles about NHS carers assessment and support. If you have any questions or comments on NHS services for eating disorders that you would like a response to, please let us know and I’ll find out for you.

We have a vacancy for a tenancy at the house (in Street). Own bedroom, share bathroom, kitchen and two living rooms, plus large sunny garden! Tenants also benefit from up to 21 hours of support, to help with a wide range of activities. This is paid for by a government fund ("Supporting People") rent may be covered by Housing Benefit depending on your circumstances.

Tenants past and present have all been able to move forward with their lives, through returning to education, getting jobs and also in achieving personal goals such as passing their driving test. Contact Estelle Davenport at SWEDA if you would like to talk through how living in the house could work for you.

Psychologists at the University of Birmingham are currently seeking young people with anorexia nervosa aged 18-30 to participate in a brief questionnaire-based study, looking at young people’s experiences of adulthood. In an attempt to understand the psychological mechanisms involved in disorders of adolescence and young adulthood such as anorexia nervosa and psychosis, the researchers have put together a questionnaire that asks about young peoples’ beliefs regarding themselves, their friends and their parents. Participants receive a questionnaire pack which they then complete anonymously and return in the pre-paid envelope. It is hoped that this research will lead to a more complete understanding of the issues important to young people with mental health concerns, and the type of services that would be beneficial to them. If anyone has any questions or would like a questionnaire pack, please contact Andy Fox at apf221@bham.ac.uk or telephone (0121) 4142227.

Complementary Therapies

At present we offer massage and reflexology sessions on Wednesday afternoons between 1pm and 5pm for eating disorder sufferers and carers. The cost for this being £15 per session (There are concessions for those on a low income).

To date this service is not well used even though in a SWEDA survey this was a service that people requested. The message is "Use it or lose it". We cannot continue to run these therapies at this present level. So if more people do not come forward we will need to review how much longer we can carry on! Please ring 01458448611 for an appointment or for more information.

Carers Group

The Carers Group is another service that is under used. Again this was requested in the survey. It runs on the first Tuesday of the month from 7pm-8pm and is a chance for carers to get together to share similar experiences and gain support.If carers have any feedback on why this group isn’t working and can offer any ideas for alternative forms of support, please let us know, your opinions would be greatly valued.

I stare at it there in the palm of my hand
and a battle begins that I don’t understand.
It’s shape is so small, it’s colour so bright
now deep in my mind voices do fight.
a part of me tells me to take a big leap
but most of me wishes this status to keep.
One hand moves forward to peel back the skin
the other just clenches it deep down within.
I can but imagine holding each piece
for I am not allowed to partake in the feast.
To chew on the flesh and release all the juice
is seen as a sin to let evil loose.
To relish the flavour as it runs down my throat
is to loose control that keeps me afloat.
No matter how hard I tell myself "yes"
the vast part of me says that it knows best.
With each piece of food starts a battle of wills;
from my head to my toes with terror I fill.
So often I think "how I’d love to eat that"
but I fear for the fact it will make me so fat.
I say to myself, "just one little go"
and the answer inside me is always a "no".
If I do fail and some food I do take
immense is the feeling of guilt it does make,
and there’s only so much that one person can take.

By P.B.

Our counselling service is available for all those affected by eating disorders. You may be experiencing anorexia, bulimia or compulsive overeating; you may have recovered from your eating disorder yet feel the need for support or you may be a carer-a partner, relative or friend of someone with an eating disorder and feel that you need support for yourself. You would be offered an initial session which will give you the chance to talk and identify areas of your life, feelings and behaviour that you would like to work on. You would also find out more about counselling and what is involved and decide whether it is the best option for you at the present time. If you decided to go forward with counselling you would be offered 6 sessions to meet with your counsellor. They will encourage and support you in gradually working towards change and at the end of the 6 sessions you will decide with your counsellor whether to continue for a further 6 sessions. There is a £15 charge for your initial meeting with a subsequent charge of £10 for each session.

If you are interested in counselling or would like more information please contact us at SWEDA.

Reflections of denial are all that can be seen
Evidence of all the pain + deception that there has been.
Through eyes that see, but not the truth,
Viewing an unknown mortal,
A stranger even to myself, confused + delusional.
Through fear, deceit + un-natural ways, a goal to be attained.
A love which was once so strong.
Sadly becoming strained.
Longing for answers of psychological roots,
Needing to see reality + apparently the truth.
A problem now so bad, hard to see an end.
Alas, there is still hope as time seems to mend.
Anon.

SWEDA PENPAL SCHEME.

Do you feel isolated / alone and wish you had someone who really understood your issues around food.

Don’t despair.
Join the SWEDA free, confidential Pen-Pal Scheme

And you too can:-
Write to others with similar problems/issues
Make friends
Share confidences
Find support and understanding
Formulate strategies

The SWEDA Pen-Pal Scheme is open
to ALL with Eating Disorders.
Phone the SWEDA Helpline today on 01458 448600
and ask for a leaflet and registration form.

SWEDA OUT AND ABOUT

As part of keeping up to date we’ve been visiting in "the eating disorder network!" Thanks for making time for us are due to Norfolk EDA, Newmarket House and the National EDA, all in Norwich, and the Priory Hospital Eating Disorders Unit Team in Glasgow. It was good to meet up with you all. I shall be writing a report on these visits for the Steering Group, so if anyone else would like a copy please let me know.

Sadly we have recently heard that CEDARS (our equivalent in Colchester) has had to close down. The people and services will be greatly missed. All here send our best wishes and hope to hear better news from Colchester in the future.

No, not those ants, these are the two-legged variety! For those of you who have not heard of ANTS, let me explain. A.N.T.S. stands for, "Adequate Nationwide Treatment for Sufferers of Eating Disorders." Allow me to introduce myself. My name is John Brice and I live in Weston-super-Mare. My wife, Debbie, has suffered from Anorexia Nervosa for about fifteen years. ANTS has it’s own website, www.ants-uk.org where you will find a large amount of information, including what made me form ANTS in May 2003. Go to http://www.ants-uk.org/prelude.php for the full story and read on from there. Lets get to the most important information; what ANTS is all about, what we have done and what we are doing now and for the rest of 2004.

"ANTS are a group primarily engaged in actively campaigning to make the changes that are needed to provide adequate, effective treatment for eating disorder sufferers happen." Again, www.ants-uk.org/downloads/index.php #booklet, for full details.

What have we done? Most recently, from Friday 23rd April to Sunday 25th April, a group of "ANTS" cycled to London. On Monday, 26th April, we met other supporters in Hyde Park and went to Downing Street to present our petitions to the Prime Minister. From Downing Street we went to the House of Commons and spent one and three quarter hours talking to two MP’s and their staff, about the problems facing those who suffer from eating disorders, their carers and families.

At this point I would draw your attention to EDM’s 533 and 849. Go to the Eating Disorders Assoc. http://www.edauk.com/whats_on_whats_ new.htm and read about these EDM’s and the appeal the EDA is making to everyone.

IT IS AN INDIVIDUAL "CALL TO ARMS", ON A NATIONWIDE BASIS, FOR THE SUPPORT OF EVERYONE WHO SUFFERS FROM AN EATING DISORDER, THEIR CARERS, FAMILIES, RELATIVES, FRIENDS, GROUPS, ORGANISATIONS, PROFFESSIONALS AND OTHERS, TO SUPPORT WHAT WE ARE ALL DOING, INDIVIDUALLY AND COLLECTIVLY, ON YOUR BEHALF.

I am making the same appeal to you. Write to your MP and tell him/her that they have not signed one or more of these EDM’s ask them why and urge them to do so. Write individual, personal letters; include the effects that eating disorders are having on you and your loved ones and tell them why it is so important that they actively support our cause. Get everyone else in the family to write their own letters; Make it a family project. There is a draft letter on the ANTS website if you are not sure what to write. Coerce the help of everyone else you know and make sure they all do the same. We need at least 150+ MP’s to sign, 200 or more would be better. Achieve that and we will have forced a debate in the House of Commons about funding and provision of adequate, effective, care and treatment for those who suffer from eating disorders, their carers and families. Come on, let’s create a "blizzard" of letters to every MP in the country!

What’s happening after this has been achieved? In October, ANTS will be planning a mass lobby of MP’s to ensure that the provision of treatment is not forgotten after the summer recess. It will be early in October, before the new session of Parliament is officially opened and before these three EDM’s can be conveniently hidden away in the previous years session.

ANTS aims to field a hundred or more people, each from different constituencies, all of whom will go to London on the same day, to lobby their MP about eating disorders. Groups from the same constituencies are fine but we need representatives from at least 100 constituencies. Why not make a day of it and do some early Christmas shopping? Perhaps stay overnight and see a show, maybe visit some of the famous sights or lively markets that occur in London; try Covent Garden, absolutely fascinating! Book in advance for cheap fares or package deals and it will not cost a King’s ransom. You could even organize a coach and offer places to other groups or individuals locally. Preparations are in the initial stages for this next phase of the campaign so please watch the ANTS website and your newsletters for further details.

I am asking you, yes, that’s right, YOU! Unite with us, give your support and join the fight! It will not take a great deal of your time or your money, Write those letters and come to London in October. This is your opportunity to serve an "Eviction Notice" on eating disorders wherever they may be in the country; to place politicians and Civil Servants "on notice" that the current situation of death and misery for so many millions of people is unacceptable and must not only change but change quickly. It’s time to stand and be counted, it’s your choice and it’s your lives at stake as well as ours.

You know only too well what devastation, destruction, misery, heartbreak and suffering eating disorders bring when they come to "live" with you and those you love. It’s time to claim back what is rightfully ours. It’s ours, we need it, we want it, we’re entitled to it, and we deserve it. We want our lives back; complete, functioning fully at the high level of quality we deserve and anything less is unacceptable.

To quote from the ANTS website, "I acknowledge that I am unable to achieve the objective alone but together we CAN do the job. We can work smarter not harder, and like the ANTS in Madagascar, we will succeed."

I am in the process of collating peoples stories/experiences in order to create an information leaflet and web page about:"Choices we may need to make"

The areas in particular I would be interested to find out about are around studying and your Eating Disorder.

If any of these seem to be how it is/was for you please could you contribute by writing a bit about your experiences?

If you wish for your contribution to have your name by it then please let me know how you want to be known. If you wish to be in a list of names as having helped to create the whole leaflet then please let me know how you want to be known. Thank you , all work will be used sensitively to make an interesting and informative leaflet and you will remain anonymous unless you indicate clearly otherwise. Nicky Linfield.

	Somerset and Wessex Eating Disorders Association "Serving those affected by eating disorders" Strode House, 10 Leigh Road, Street, Somerset, England, UK

© 2004 ~Somerset and Wessex Eating Disorders Association Date: