Louise Wilkins - Louise has asked if we can start a helpful hints section. So as of next newsletter there will be a new sub heading. Obviously without anybody sending in helpful hints there will be no point in having it. So please could you send in all your helpful tips.

The Department of Health has produced a booklet entitled “Standards for Children in Hospital”. For a free copy, please ring 08701 555 455 and quote reference no. 31303.

Connexions is the new advice and guidance service for all young people aged 13-19. Connexions has been established to support young people in schools, colleges and post-16 education, work-based learning, employment, and those not in education, training or employment. If a young person has a disability or learning difficulty, they may continue to use the Connexions Service up until the age of 25.

Connexions Services have now been set up in all areas of England, and they bring together advice, guidance and support for young people under one easily recognizable brand. There are 47 Connexions Partnerships, which follow the same regions as the local Learning and Skills Councils. In each partnership there are a number of Connexions Services, each of which in turn employs a number of personal advisers. You can find your local Connexions Service in the phone book, or on the Internet at http://www.connexions.gov.uk/partnerships.

Every young person has access to a personal adviser (PA), who can be based in schools, colleges and Connexions Services, and can also be reached via community centres and youth work. PAs are there to support young people at all times, especially at times of transition, when choosing subjects at 14 and 16, and when looking for work, training or further education. Connexions Services have access to a wide range of information about careers, employment and further study. They can also help young people looking for opportunities to volunteer and can offer advice and support on personal issues that are affecting study, progression, social or home life. The support offered by a PA depends on the needs of the young person. The support provided may range from basic information, advice and guidance, to more substantial one to one support for young people from more vulnerable groups.

There are two more important services that Connexions offers. The first is Connexions Direct, a multimedia resource, where young people can use the Internet, call, e-mail, text, or web chat to gain information or advice about a range of subjects, including health, housing, relationships with family and friends, and career and learning options. Connexions Direct advisers take calls from 8.00 am to 2.00 am seven days a week. The phone number is 080 800 13219, and more information can be found on the Internet at http://www.connexions-direct.com.

The second service is the Connexions Card, a smartcard available to all 16-19 year olds involved in post-16 education, training and voluntary activities throughout England. The card allows young people to collect reward points for learning, work-based training and voluntary activities. These can be exchanged for discounted and free goods and services and other rewards. The Connexions Card is available through schools, colleges, training providers and Connexions Services, or by calling 0808 172 3333.

Connexions is an organisation which works across England. If you live in Wales the equivalent is Careers Wales http://www.careerswales.com Tel. (029) 2085 4880 or call Contact a Family Wales for more information. Careers Scotland provides a similar service in Scotland, http://www.careers-scotland.org.uk Tel. 0845 8 502 502 or call Contact a Family Scotland. Call Contact a Family Northern Ireland for details of support in Northern Ireland.

This article was first published in the Contact a Family Autumn 2003 Magazine, “Share an Idea”. It was written by Kate Goddard from Skill: National Bureau for Students with Disabilities.

What do you see?


I am looking at you
You are looking at me
I can see life
Is that what you see
Do you look further?
Do you see me?
Or do you see difference
What do you see?

Does your thoughts or disdain impair your vision
Do I look different?
I do not look the same
Do you see a “normal” me?
Is your vision impaired?
What do you see?

Do I walk with a limp?
Do my arms look odd?
Do I hold out my elbows?
Do legs look wrong?
You see the outside but dare not look in
Are you afraid of what you will find within?
For fear is our enemy, not the body we live in

We are courageous for mountains we climb
And continue to climb time after time.
Do you ever hear me complain or descent
Say I ache or hurt, and energy spent
Do I act any different?
Any different from you?
In work at home
If only you knew

By Sue Berthe, July 2003

And the winners were!!!

We were the lucky winners of the first prize of the raffle of the HME conference in March this year - 1 night dinner, bed and breakfast for two at the Westley Hotel, Birmingham. It was possible to pay a £10 supplement to take our two children, Laurie and Isla, with us.

We chose to go down the day before the party for my son Laurie's 5th birthday. We had the party at 3pm on Sunday the 27th of July. We booked in a trip on the Saturday to visit Cadbury World. Everyone really enjoyed that; Laurie particularly enjoyed the shows and got a taste of the limelight, going up on stage and spinning plates, as one of the entertainer's assistants!

Afterwards we went back to the hotel and enjoyed a meal at the hotel. The next day, after managing to eat surprisingly large breakfasts, considering the amount we had eaten the night before, we returned to our home on the Wirral and had a hectic few hours preparing for Laurie's Spiderman party.

All the kids loved the party - games included pin the spider (with the help of Velcro) on a life size inflatable Spiderman! It was certainly a very busy weekend, but it was a wonderful way to celebrate Laurie's birthday!

Best wishes
Tina Read

Research... Research... Research...

Annette Hames, a Consultant Clinical Psychologist in Newcastle, is doing some research about the experiences of siblings (brothers and sisters) of children with disabilities and chronic health conditions. The aim is to produce written material based on siblings’ personal accounts. She is interested in hearing from any siblings aged 4-18 years. If you are interested and would like your children to contribute, then you can contact Annette at: Sanderson Centre, North Avenue, Gosforth, Newcastle upon Tyne. Annette’s telephone number is 0191 2196800 and her email address is annette.hames@nap.nhs.uk. Please mention that you are a member of the HMESG.

Judith Fletcher has been working hard over the summer and has compiled an alphabetical list of all the medical papers we know of relating to HME. If you would like more information please ring Judith Fletcher on 0121 742 3078.

Calling all families with under 5s in Birmingham

Do you live in Birmingham and have a child who is under 5 and has a rare disorder? Contact a Family are delighted to announce that they have secured funding until March 2004 from Birmingham Early Years Partnership, to work with families of children under 5 years with rare disorders. They need to hear from families in Birmingham with under 5s with a rare disorder to find out their experiences of services and their views about the support they need.

Was there difficulty in getting a diagnosis? Is it hard to find information? How are services accessed? What experience is there of using mainstream services? CaF would like to hear both positive and negative views. Please contact Sarah or Kirsty at CaF West Midlands on 0121 455 0655 or you can email westmids@cafamily.org.uk.

(Information taken from CaF’s Rare Disorders Newsletter)

What’s in a name?

Since we set up the HMESG Website in 1997, we have been running a Survey to find out which name is used most commonly for the condition. We have had 89 international responses. Here are the results to date:
 

HME	53
Knobbly bones	3
Lumps	3
Diaphyseal Aclasis	11
Familial Bony Spurs	1
Osteochondromatosis	10
Multiple Osteochondromata	8

It is interesting that amongst those who took part in the Survey, HME is clearly the most well known name for the condition. What do you think? Why not log onto our website and take part in the Survey too!

Editor's Bit!

You are never going to guess what they have asked me to do, they have made me put in a picture of myself. Yuk!! Ok this is what you get if I do not have enough material to work with! Let this be a lesson to you all!

For all those members that have never met me this is I, at friends in Sussex a few weekends ago. I am sat in the garden with a glass of lemonade. Yes it is lemonade!

In the last newsletter I asked you to let me know if you were at any musical festivals over the summer. Well have a guess where I went.

First off John (my husband) and I took our children to see Busted. Who are they I hear you cry. Just ask your children they should know them. They have been in the charts all summer with various hits. They are aimed at children and teenagers, but my husband and I are children at heart. It turned out to be a very enjoyable evening and our kids absolutely loved it.

Then back on August 2nd John and I went to see Robbie Williams at Knebworth. It was packed, you could not move a muscle, the sun was beating down on us, and every inch of ground was littered with Robbie fans. Did we enjoy ourselves? - you bet we did!

Luckily for us we were staying with Dawn and Paul Searle who live only a few miles from Knebworth so when every other car were in those endless miles of tailbacks we flew straight on by.

Anyway enough about me, next newsletter I am going to pick another committee member, they can write a small piece about themselves and I will make sure you see a photo so you can put a name to their face.

Have a great Christmas and New Year and do not forget to send in all your articles for next issue. Take care

Debi Roper

Our Next Meeting

Read Sarah's piece on the AGM and Edinburgh Conference.

We want to hear from YOU!

Submissions of articles and comments to:

Debi Roper
HME Support Group
PO Box 395
Headington DO
Oxford
OX3 9WF

by the end of March 2004. Thank you.

Moving House?

Please don't forget to let us know when you change your postal address, telephone number or email address. Thank you!

Disclaimer

Please note that any views expressed herein, by individual group members, are not those of the Group as a whole and separate entity. The HMESG cannot accept responsibility for any goods or services mentioned in the Newsletter.

HME Support Group

HME Support Group
PO Box 395
Headington DO
Oxford OX3 9WF
United Kingdom

Tel. +44 1438 861 866

Email: support@hmesg.co.uk
Web: www.hmesg.co.uk/

Stop Press...

As we go to press, news has just come in that Dawn has raised over £300 by holding a fund raising Halloween Disco in aid of HMESG. Well Done to Dawn and everyone else who helped.

HME Support Group Trustees
Judith Fletcher	National Contact Midlands/Wales 0121 742 3078
Steve Harding	Treasurer
Sarah Nicholls	Secretary
Debi Roper	Newsletter Editor
Pat Savage	National Contact South 01305 772225
Dawn Searle	Fund Raising
Helen Small	Chair
Stephen Watson	National Contact North/Ireland 01204 699984

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