Author Topic: EDM 1131: Hypermobility syndromes awareness  (Read 924 times)

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EDM 1131: Hypermobility syndromes awareness
« on: February 26, 2016, 02:05:11 PM »
http://hypermobility.org/action-hypermobility-syndromes-awareness-week-early-day-motion-1131/


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Action: Hypermobility Syndromes Awareness Week – Early Day Motion 1131

Posted By HMSA Editorial Team, February 25, 2016

Parliamentary Early Day Motion 1131 – Hypermobility Syndromes Awareness Week

Because bendy isn’t the half of it. Put your MP to work by asking them to acknowledge and sign this motion calling for earlier recognition, diagnosis and needs-led interventions for the 1.5 million people in the UK affected by a hypermobility syndrome.

55 per cent of people take 10 years to reach a diagnosis impacting on not just physical health but on relationships, education and work opportunities and potentially increasing socio-economic dependency. Hypermobility syndromes can be rare, genetic, and potentially life-threatening and as those of us who have them know, these usually invisible illnesses have a broad range of systemic health impacts besides the obvious musculoskeletal symptoms.

If (like the HMSA) you are concerned that there is a lack of specialist services in the UK and that services which are available are fragmented and difficult to access when needed as late or lack of diagnosis increases the burden on health and social services, formally ask your representative to sign, or explain why they will not act on this issue.

To find and contact your Member of Parliament, use http://www.theyworkforyou.com/mp/

The full text of the Early Day Motion can be found below:


http://www.parliament.uk/edm/2015-16/113


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Hypermobility Syndromes Awareness Week

Session: 2015-16
   
Date tabled: 24.02.2016
   
Primary sponsor: Lamb, Norman
   
Sponsors:
       
Bottomley, Peter


That this House welcomes the first Hypermobility Syndromes Awareness Week campaign organised by the Hypermobility Syndromes Association (HMSA), taking place from 22 to 29 February 2016, which encourages earlier recognition and diagnosis and needs-led interventions;

notes that around 1.5 million people in the UK are affected by a hypermobility syndrome, but that 55 per cent of people take 10 years to reach a diagnosis, impacting on not just physical health but on relationships, education and work opportunities and potentially increasing socio-economic dependency; further notes that hypermobility syndromes can be rare, genetic, and potentially life-threatening;

is concerned that there is a lack of specialist services in the UK and that services which are available are fragmented and difficult to access when needed; notes that late or lack of diagnosis increases the burden on health and social services due to repeat presentations for complex and multi-systemic issues which may be avoidable with earlier intervention; understands the importance of earlier diagnosis and access to treatment in promoting people's physical health and mental wellbeing;

encourages hon. Members to raise awareness of HMSA's website www.hypermobility.org, which has information and signposting advice to help people understand their conditions; and congratulates HMSA, which is primarily run by volunteers with one of the hypermobility syndromes, for organising Hypermobility Syndromes Awareness Week and its other important work.