Hypermobility East Anglia Group
Who we are?
We currently reside in the Colchester area at the current moment, but there are plans to have branches in Suffolk, Norfolk and Cambridgeshire that will come under the direct authority of this branch, as we are the head group of this organisation. We are an independent group, but we are not talking shop as we try and find out what people's problems are and try and work programme around the issue.
We campaign hard with key specific organisations, such as the NHS on the local scene including programmes could process mapping. This includes seeing what is missing in the treatment plans within a hospital and this also involves a multidisciplinary working plan including Paediatrics, Occupational Therapy and Physiotherapy.
We are also involved with various forums where we can lobby for improvements in the number of different areas, namely a controversial sector such as the education system.
We also plan several information days a year and encourage people who work in particular sectors with the condition to go and talk about it.
Promoting the Organisation and awareness
This involves the collection of:
The bi-monthly newsletter
A new opportunity to try and produce three books as part of our education programme:
An anthology of personal experiences
A book that is aimed at children and teachers particularly those specialising in physical education and also school governors
A book written for teenagers and by teenagers
The New Opportunities Programme
This is a two-way process, namely people can gain some therapy from producing
an item for sale for an interesting hobby and have pleasure in taking part in a
class sale and at the same time trying to spread the message about the
condition. Each person who takes part will receive a certificate.
Open Advice?
We would like to have some advice/open clinics in each of the
areas identified, but at the moment we need somewhere preferably in the
Colchester and Clacton area to meet at least once a week with the prospect of
extending this to twice a week and also to hold a monthly morning meeting.
For training will be given and we hope to be able to run our own pain management classes and each participant will receive a certificate with another opportunity to become a pain manager/adviser will stop
Liaison?
We work very closely with other disabled organisations and
strategy organisations and also try to bring these matters to the attention of
constituency members of Parliament. We also try and publish most of our events
for the press and the Internet.
Main Aims
We are able to give advice and support to sufferers and
carers from all backgrounds within the community and direct them to useful aids,
equipment and relevant health professionals!
We liase very closely with:
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Social Service Departmentsq
Local Education Authorities (including work with forum groups)q
All BBC Radio Stations that cover East Angliaq
Voluntary organisations (such as the EPDA)q
Welfare organisationsq
Hospitalsq
Schoolsq
Community associationsOur work involves promoting and spreading the message through:
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Exhibitionsq
Eventsq
Information days that help and give advice to othersTo be able to provide specialist pillows and wedges and other suggested ideas from members.
We have an open policy established in this group and what this means is that we encourage all people who get involved in this organisation to help in whatever way they want to. For example, to take on the role of a sub branch organiser in Norfolk, Suffolk or Cambs) or as a local representative.
Principle Activities
We have a physiotherapist who is able to give advice about the role of Pilate and Hypermobility.
This group does not discriminate and has a clear equal opportunities policy. (Ask for copy!)
One of our important principle aims is to:
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To form an anthology of accounts for both Children & Adultsq
A book for Children, and all teachersq
A book written and produced by Teenagersq
This will form part of our educational package.We hope to be able to run own specialised form of Pain Management and then recruit a pain manager. All participants will receive a certificate upon completion of this course with the opportunity of becoming a pain manager/adviser.
We aim to introduce our ‘New Opportunities programme’ that will form part of a therapeutic form of relief (a sort of Occupational therapy package), but this allows people to raise funds, have fun and get to know other people
For more information about Hypermobility Syndrome why not pay a visit by clicking on the link.
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